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misspudding
Wednesday, June 4, 2014, 7:09pm Report to Moderator Report to Moderator

Rh-, MTHFR, SWAMI GT4 Explorer, ENTP rationalist
Ee Dan
Posts: 962
Gender: Female
Location: Seattle
Age: 37
I've decided to start this thread as my own personal place to heal my son's gut (and mine, as well). Here goes!

I've had celiac-like gut problems my whole life. My son was recently diagnosed with Crohn's-like IBD (weight loss, constipation-predominant). We have a lot working against us. We're O-negative, gut-reactive types.

I've been mostly BTD/GTD (Explorer) compliant for several years, except for my morning coffee and the occasional corn chips. I tried doing a full-on "paleo" diet two times in the last two years. Both times I ended up having migraines every other day! So I know I do okay with some brown rice and compliant beans. I gave coffee up last year for several months (and felt amazing). I've been struggling since I live in the Seattle area and if you've ever been here, you know it's a coffee-lover's dream (and coffee-avoider's nightmare). Once the weather turns gray and cold for 9 months of the year, it's very hard to avoid having a hot beverage that has a lot of body to it. Tea just doesn't cut it sometimes. So, that's been my experience. I *know* I'm an Explorer.

My 9 year old son has pretty much been eating the Hunter GTD diet for the past two-plus years, except for milk chocolate, corn and non-GF oats. He's been low FODMAP for the last two years because of ongoing tummy issues (he had diarrhea as a baby, which we determined was a dairy allergy; he had chronic constipation beginning two years ago), but after a recent round of rifaximin (for IBS/pre-colonoscopy prep), his hydrogen/methane breath-test "cleared" him of fructose malabsorption. He's back to diarrhea now while he's on steroids for the IBD. Thankfully, he tapers completely off of them in about 10 days. He was on mesalamine for about 10 days, but he seemed to be getting much worse, so our GI doc is allowing us to follow diet intervention, as we originally requested. The sensitivity to drugs makes me wonder if he's an Explorer, but I think he's more of a Hunter given his gut sensitivity.

I've currently got him on the Hunter diet. I'm giving him mostly superfoods, with some neutrals. I think we should buy stock in either Dole or Chiquita because of all of the bananas he's been eating. This kid has always been able to eat way more meat than I have (which is saying a lot). He can easily scarf down two pounds of meat in a day.

We'll be getting the SWAMI in the mail in the next day or two, I hope. I'm interested to see how much of it overlaps with Elaine Gottschall's Specific Carbohydrate Diet (SCD). The IBD community is fanatical about SCD because it's cured a lot of people, but it seems even stricter than what my son is currently on, if I take into account his dairy allergy and given his history of FODMAP issues. SCD is not low-fructose. I feel what he really needs is more choices, more nutrition. So much of what I've read about autoimmune disease is that you're dealing with a chronic lack of good nutrition, mainly due to gut dysbiosis. Reasons again I'm leaning toward SWAMI over SCD. But again, maybe the food lists will be similar. No clue at the moment.

So that's really why I'm documenting my journey here, because I hope that there might be another family with a kid with IBD who is at wit's end like we've been. Thankfully, his case is "mild" per the doc (probably because of all that we've done already), but I know this is a chronic disease with periods of flare and remission. My son has not gained any weight in two years, and we're getting very close to the puberty years, so it's a pretty critical time to figure everything out.

Comments are fine here, but I am trying to keep this in "blog post" form.

Thanks for reading!  


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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Seraffa
Thursday, June 5, 2014, 5:29pm Report to Moderator Report to Moderator

Explorer!
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enjoy your time posting; more power to you and best wishes!


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misspudding
Thursday, June 5, 2014, 5:30pm Report to Moderator Report to Moderator

Rh-, MTHFR, SWAMI GT4 Explorer, ENTP rationalist
Ee Dan
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Thanks, Seraffa! This is all a challenge, and I figured this was the best place to vent!


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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misspudding
Thursday, June 5, 2014, 5:48pm Report to Moderator Report to Moderator

Rh-, MTHFR, SWAMI GT4 Explorer, ENTP rationalist
Ee Dan
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Post 2

One of the hardest parts about teasing out what hurts and what helps for my son, in this initial diagnosis with IBD, is the effects of medicines and supplements.

For example, I never knew why everyone I talked to who also had Crohn's or ulcerative colitis said, "Avoid steroids if you can!". I was like, "Aren't they supposed to help? Why would they prescribe steroids if they don't help?" Well, sure they tell the immune system to back off, but holy c**p are there side effects!!!

We started IV steroids (methylprednisolone, which for all practical purposes is prednisone) in the hospital over a month ago. Immediately, my son felt fine, compared to how he had been feeling. He hadn't been sleeping well in the hospital because who does, so it was hard to tease out the fact that the steroids were having any other effects.

But then we left the hospital and were sleeping in our own home, and it was apparent the steroids were very much Dr. Jekyll and Mr. Hyde. My son couldn't fall asleep until 5:30 in the morning that first week, and then would maybe sleep for three hours. He looked miserable. Our naturopath recommended ashwaganda, which definitely took the edge off. In hindsight, I'm sure rhodiola would have been helpful.

As we've tapered off of the steroids (we still have about a week and a half at this point), I started to notice other awful effects. He was on antibiotics right before he went into the hospital, both for the SIBO diagnosis from our naturopath, and the pre-procedure prep from our MD. Later breath testing indicates the bad bacteria that produce hydrogen/methane were successfully wiped out. But because of the steroids, his immune system can't handle the yeast that have taken over. He's had gas and bloating and "diaper" rash. It seems to be better but yowza! Couple that with the fact that they're liquid steroids with all kinds of sugar to make kids take them, and it's not a good time.

I'm also giving my son L-glutamine to help heal the gut, but I've read it can be a source of fuel for the yeast. We're also doing a probiotic and our ND recommended coconut oil and/or ghee. Assuming my son is a non-secretor, I think that's probably okay. But these can all have their own fun side effects.

On the anti-inflammatory side of things, I've got the curcumin, ginger, and fish oil going on. The curcumin can cause gas and bloating, though generally mild for most people, and the benefits totally outweigh and kind of side effects. Ginger is a godsend. It really seems to calm his gut. No clue on the fish oil, but since most of my ancestry is Northern European (mainly Scottish, Irish, Dutch and Danish), I know he probably needs it. I've never had any problems with fish oil.

We're doing the Hunter diet right now, since that seems to be the most gut-soothing of our options. Still waiting on the SWAMI, which should arrive on Friday, based on mail tracking. I'm still leaning toward a one-two punch of SCD in the context of SWAMI. Hoping that won't be too restrictive. Also hoping that makes the most sense. In any event, lots of high-quality meat and soothing veggies and fruits can't hurt! Really hoping that his diet won't be this strict for very long. He desperately needs to gain weight.


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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misspudding
Thursday, June 5, 2014, 11:57pm Report to Moderator Report to Moderator

Rh-, MTHFR, SWAMI GT4 Explorer, ENTP rationalist
Ee Dan
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Post 3

Oh wow. Just SWAMIed him!

Totally, absolutely thought he'd be a Hunter, but he's an Explorer! Guess that pesky MTHFR gene and fingerprint patterns did us in! Wow. Well, at least I know I'm not just cooking for me anymore!

Well, c**p. It says rice is a superfood. I plugged in nonsecretor, just on a hunch, and it still came up with rice as a superfood. Not a diamond one, but still beneficial. I don't know what to think. Based on everything I've heard about IBD diets, things like SCD and GAPS and Paleo, it says if you have a gut problem, cut out all grains. Ugh, I'm so nervous. Would love to see others input on SWAMI versus SCD and whether or not they're doing grains.

Ugh, it's really hard being an explorer with gut issues!

Overwhelmed!  


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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Sarah2146
Friday, June 6, 2014, 3:05am Report to Moderator Report to Moderator

42% Hunter, RH+, Slight Taster, INTJ
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Hi MP,
Have your son try out abit of compliant rice, like brown rice (hope is compliant for him)
Also, have your son take more vegetables, esp brocolli.
For fruits, i'm not sure if swami allow him to take watermelons, check it out, is suppose to be a real good fruit for Os.

Hope your son can take Deflect and Polyflora, cos these help alot for us Os.

Explorers have quite limited food choices i think, but stick to his swami recommendations and monitor his reactions to those foods.
Sometime neutrals maynot be good for him, do take note.

Take care



Eat Healthy, Eat Happy!! , you have only 1 body.
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ayaka
Friday, June 6, 2014, 3:26am Report to Moderator Report to Moderator

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i think watermelons are diamonds for ALL types. and pineapple are neutral if not superfood for all as well. haven't seen anyone who has that as avoid..

'alkaline-forming' foods should be good for the O-digestive track.

Limes, lemons, grapefruit. not sure if they're all compliant.


ENTP among familiar surroundings, INTP everywhere else
SWAMI made me enemies with all my favourite foods, but i've made new friends along the way. Aiming for more MUSCLE!!!
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misspudding
Friday, June 6, 2014, 4:24am Report to Moderator Report to Moderator

Rh-, MTHFR, SWAMI GT4 Explorer, ENTP rationalist
Ee Dan
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Thank you all! He loves lemons like crazy right now and they seem to be helping a lot. I'm going to look into ordering the polyflora. He had SIBO/fructose malabsorption, but that seems to be gone at the moment, so hoping things like watermelon will be okay. Going to take it slow with anything high in fructose.

Which brings me to agave? Why is it a superfood over honey? It is so high in fructose, I'm very reluctant to use it.


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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ayaka
Friday, June 6, 2014, 5:09am Report to Moderator Report to Moderator

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agave is low G.I. which means it doesn't raise your blood glucose too fast


ENTP among familiar surroundings, INTP everywhere else
SWAMI made me enemies with all my favourite foods, but i've made new friends along the way. Aiming for more MUSCLE!!!
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misspudding
Friday, June 6, 2014, 4:34pm Report to Moderator Report to Moderator

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Ee Dan
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Post 4

Figuring out SWAMI definitely explains why a couple of Larabars on the weekend might have really screwed him up. Dates and brown rice syrup aren't the best choices right now. I will definitely have to look into making my own with figs. Also, one of the SCD diet options is heavy reliance on honey. Made some almond honey muffins the other night and he's had a few. I don't think it was as bad as the dates, but the honey isn't helping either, even if it supposedly has some antibacterial properties. I can already see that SWAMI > SCD.

Still nervous about agave and high fructose fruits and rice. Not nervous about anything else. Really want this kid getting as much nutrition as possible. He's not losing weight at all, thankfully, but he's not really gaining at this point, either. Really want him off of the steroids, NOW! One more week is all, thankfully.

I am sadly finding out, first hand, what stress does to your gut, though. This whole process (diagnosis and treatment of IBD for my son) has been hell. Normally, my gut isn't the best, but lately, it's been pretty bad. It's not stomach flu bad, but when I'm so stressed out I start to get "tingly" in my ears (easy predictor for a migraine if I don't do something about it), everything goes south below the belt. I've given up wine (woo)! Now I need to start rolling back the coffee again. Last year when I did it, my anxiety went way, way down. It is my only vice, but it's a very difficult one to kick. I'm still surprised I gave it up as long as I did last year.

Hoping for a good day!


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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Jane
Friday, June 6, 2014, 6:07pm Report to Moderator Report to Moderator

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Get some Catechol (sp?) for yourself.  That will help with the anxiety.  
Years ago there was someone on these boards.  He was from Germany I think and he swore that rice and Maine blueberries saved his life when he had IBD. He lived on just that for a while.
I have it too, have had it for many years and been following O diet since the mid-90s.  Some veggies do bother me - too many carrots for one thing.  When I was first diagnosed in 1994 before I found BTD, doctor wouldn't allow me any veggies, not even baby food veggies.  Thinking has certainly changed since then and I eat most things that are O compliant.  One of these days I'll get to Bridgeport and get a Pro
SWAMI.
I feel best on lean buffalo - I buy the fresh ground at WFs and add seasalt and ground garlic and grill it.  If I want a sandwich, I use the Food for Life breads - mostly the Bhutanese Red Rice or the Black China Rice.  If I can't find them which I haven't been able to lately at my local SFs, I buy the millet/rice.  You have to toast them but they don't fall apart like most GF breads.  
I never had to go on the steroids.  I take an English drug called IC Balsalizide (much cheaper than the ASAs) and the Canasa Suppositories.  They help a lot.
I wish you son the best.  By the way, Dr. D once recommended I try something called Seacure - it's made from Whitefish.  Bought it once but I didn't see much difference.  You can google it to find it. Maybe it will help your son.
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misspudding
Friday, June 6, 2014, 9:43pm Report to Moderator Report to Moderator

Rh-, MTHFR, SWAMI GT4 Explorer, ENTP rationalist
Ee Dan
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Thank you for your information, Jane!

I think my DS didn't tolerate the ASA drug they put him on (Apriso). He seemed to get worse on it, though I have no idea if that was actually the case or if it was a food or even if the steroid mucked with things. The steroids are hard!

You have any idea if you lean more toward Explorer or Hunter? I'm wondering if the ASA drugs are hard for Explorers because of the salicylates? I'm sensitive to aspirin and pepto bismol, but have no problems with the topical salicylate pain creams.

Glad to hear you tolerate rice. I've heard good things about blueberries, too.

Have you ever done IgG testing to figure out if you have food sensitivities/intolerances? It's a blood test. We did that and only dairy showed up.


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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md
Saturday, June 7, 2014, 1:42am Report to Moderator Report to Moderator

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Quoted from Jane
Get some Catechol (sp?) for yourself.  That will help with the anxiety.  
Years ago there was someone on these boards.  He was from Germany I think and he swore that rice and Maine blueberries saved his life when he had IBD. He lived on just that for a while.
I have it too, have had it for many years and been following O diet since the mid-90s.  Some veggies do bother me - too many carrots for one thing.  When I was first diagnosed in 1994 before I found BTD, doctor wouldn't allow me any veggies, not even baby food veggies.  Thinking has certainly changed since then and I eat most things that are O compliant.  One of these days I'll get to Bridgeport and get a Pro
SWAMI.
I feel best on lean buffalo - I buy the fresh ground at WFs and add seasalt and ground garlic and grill it.  If I want a sandwich, I use the Food for Life breads - mostly the Bhutanese Red Rice or the Black China Rice.  If I can't find them which I haven't been able to lately at my local SFs, I buy the millet/rice.  You have to toast them but they don't fall apart like most GF breads.  
I never had to go on the steroids.  I take an English drug called IC Balsalizide (much cheaper than the ASAs) and the Canasa Suppositories.  They help a lot.
I wish you son the best.  By the way, Dr. D once recommended I try something called Seacure - it's made from Whitefish.  Bought it once but I didn't see much difference.  You can google it to find it. Maybe it will help your son.

I remember that about the blueberries and white rice.  That was Joachim that shared his story.
http://www.dadamo.com/forum/archivea/config.pl?read=88839

http://www.dadamo.com/forum/archived/config.pl?read=130785


Sirach 37:27
For not every food is good for everyone, nor is everything suited to every taste.




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md  -  Saturday, June 7, 2014, 2:01am
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Victoria
Saturday, June 7, 2014, 2:45am Report to Moderator Report to Moderator

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How about Intrinsa and ARA6, along with the Polyflora and Deflect?  Well, actually that seems like too much for someone whose gut is struggling so much.  But I'm not sure which one I'd eliminate.  It helped my lifelong IBS tremendously when I stopped all dairy, but since I'm not eating ghee anymore,  I really crave the Intrinsa.

Polyflora is essential, in my opinion.

Deflect seems very important, but maybe others who take it regularly can say whether it may be harsh on a delicate gut.

Rice rates about the same for me, as your son, on my SWAMI.  However cooked grains sit like a rock inside me.  But lightly toasted organic rice cakes are a different matter.  I digest them easily and they offer variety and a satisfying crunch.  Also, a way to eat sandwiches or just have something to put a topping on.



Normal day, let me be aware of the treasure you are.
Let me not pass you by in quest
of some rare and perfect tomorrow.
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ayaka
Saturday, June 7, 2014, 10:07pm Report to Moderator Report to Moderator

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honey and table sugar share the same glycaemic index im sure. Hence it's not the best for a sugar choice. Maybe sparingly to supplement the nutrients in small amount might be ok.

Im guessing maybe he could stay away from the sugary stuff for awhile and see if it helps. Sugar does promote breeding of bad hats in the gut i think? After all sugar promotes the growth of cancerous cells.

Irregardless of g.i., any form of sweetener constitutes to the amount of sugar per day so be careful with the portion


ENTP among familiar surroundings, INTP everywhere else
SWAMI made me enemies with all my favourite foods, but i've made new friends along the way. Aiming for more MUSCLE!!!
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misspudding
Sunday, June 8, 2014, 1:58am Report to Moderator Report to Moderator

Rh-, MTHFR, SWAMI GT4 Explorer, ENTP rationalist
Ee Dan
Posts: 962
Gender: Female
Location: Seattle
Age: 37
Yeah, he seems to be doing well with rice cakes, bananas, lemon juice, and meat at the moment. He just tapered down on the steroids and has had a very good day today, so I think a lot of his problems were the sugar in the steroids (and well, the steroids).

I have high hopes for SWAMI, but I think our doc is going to want us on SCD, at least short term. Will definitely be modifying it (no honey, for instance).

I've been wanting to look up Polyflora, but the site was down for updates. Hope it's back up again!


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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Drea
Sunday, June 8, 2014, 2:07am Report to Moderator Report to Moderator

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How old is your son? (it doesn't matter, I'm just curious)...

I have a dear friend who has Crohn's and she mostly follows the SCD, with a side of BTD. She's my age, though.


It is not my responsibility to convince anyone of anything.
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misspudding
Sunday, June 8, 2014, 2:24am Report to Moderator Report to Moderator

Rh-, MTHFR, SWAMI GT4 Explorer, ENTP rationalist
Ee Dan
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He's 9. Been struggling since he was a baby with digestive issues, though. He would react to the HFCS in the tylenol we were giving him for teething (at 3 months!), and any dairy I would eat when I was nursing after we supplemented with formula when he was a newborn. I nursed for 20 hard months, though, because I had a hunch he would have tummy issues, as I've had them forever.

He did well from about one year old to 6.5 years old. Then started getting clogged up due to SIBO (had several rounds of antibiotics due to sinus infections between 2 and 5). He breath tested positive for fructose malabsorption, but we think it was SIBO. SIBO is cleared up, supposedly (confirmed through breath testing), but obviously we need to build the gut bacteria back up with good bacteria. The steroids have not helped in that regard. Ugh.

Most of the folks I know with Crohn's have treated it successfully with diet, mainly being gluten and dairy free. He never had bleeding, thankfully. Actually, knock on wood, his doc said his case was "mild".


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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misspudding
Sunday, June 8, 2014, 2:36am Report to Moderator Report to Moderator

Rh-, MTHFR, SWAMI GT4 Explorer, ENTP rationalist
Ee Dan
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Post 5

Today was a very good day! We tapered off to the last level of steroids (thank you baby Jesus!!!!!!). He'll be on it for one more week and then we can really, seriously, focus our efforts 100% on diet. We've mainly been doing SWAMI, but with the steroids in the mix, it's all over the place, so I've been letting him have rice milk (technically an avoid, but it's

We did the Seattle branch of the CCFA's "Take Steps" walk this afternoon. It wasn't too long of a walk, but DS has been struggling with "diaper rash" (though not bad since the latest taper, yay!) so we let DS bring his bike. He probably rode five miles, total. It was a decent event and the weather was pretty fantastic. I love this time of year in Seattle.

My happiest observation from this last month of hell is that this kid eats up exercise like it's candy! And it has such an amazingly good effect on his inflammation and pain. Seriously, every single time he's had pain lately, he asks, "Mom, can I ride my bike?". After 20 minutes of pedaling and getting some sunshine, he feels great. It is so fantastic! And today, he's (knock on wood) been pain free. I'm convinced it's those evil steroids. Ugh, hate them! I truly think they've done more harm than good.

Tomorrow, we'll be going to a bike swap that his elementary school told us about. Kids can turn in their old bikes, and they can get trade in value toward new bikes that have been fixed up by awesome bike mechanics. Considering how amazing the bike has been to him, and considering it's a bit small (he was never this fanatical about riding until he realized what a dramatic effect it has on his health), we'll definitely be doing that.


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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Serenity
Sunday, June 8, 2014, 6:51am Report to Moderator Report to Moderator

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That is so lovely to hear!  Bike riding makes for the best memories....
Glad he has improved so much
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misspudding
Monday, June 9, 2014, 11:07pm Report to Moderator Report to Moderator

Rh-, MTHFR, SWAMI GT4 Explorer, ENTP rationalist
Ee Dan
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Thanks, Serenity. I agree!

We determined that he needs to grow another inch or two before we move up to the next sized bike. But we'll definitely do that when he's grown!


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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misspudding
Monday, June 9, 2014, 11:58pm Report to Moderator Report to Moderator

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Ee Dan
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Post 6

As I posted elsewhere on the forum, I had a major "a ha!" moment (do it in your best Oprah voice in your head), I've come to the realization that maybe the reason my son has stayed relatively stable over the last couple of years, but didn't get better, was that his diet has been relatively limited.

Some of it was due to when you have gut issues, you tend to be very picky. I remember when I was a kid and I had a really limited diet. My family teased me mercilessly about it (I'm the only Rh negative in a family of Rh positive peeps...that's my theory at least...). Only when it was obvious to me that it was gluten (in my 30s!), did I get a little more adventurous with food.

However, some of the being limited with diet is truly because of me. I've been so terrified that some food that I'm going to give him is going to make him worse, so I just stuck to super basic stuff. Mainly gluten free, low FODMAP, dairy free stuff. Meat, eggs, rice, corn, oats, a handful of veggies that didn't seem to hurt. Now I know I should have been pushing more variety. But I still have this PTSD of "OMG, what if this sends him to the hospital again?!"

Thankfully, again, he has a "mild" case. No bleeding, no fistulas, no stenosis of anything. Whatever we've been doing has kept his IBD from getting out of control, but he's not "getting better". So I'm going to change my paradigm, my thinking to what Dr. D. said:

"It wasn't what I was taking away from people that would make them better, it was what I was I isolated that they should consume that would make them better."

Still, as a parent of a child with a chronic illness, this is terrifying. Deep breath...and go!


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Lola
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have you thought of secretor testing for you both?

Quoted Text
it was what I was I isolated that they should consume that would make them better."


now it makes sense, no?


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misspudding
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Ahh! Got it.

Yes, would love to do secretor testing. Actually ordered it a few years ago for me but kept the sample in my fridge too long. Now the test is more than twice the cost. Can't justify it as I'm not working right now. Money is very tight.


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misspudding
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Post 7

Currently in SCD vs. SWAMI secretor vs. SWAMI nonnie hell. Really, I should just title this post "Honey".

Certain foods are bennies on SWAMI for O secretors and SCD compliant. Honey is pretty much the biggest example. For my likely SWAMI O nonnie, it's a black dot. Unfortunately, money is very tight and I don't have enough to spring for the secretor test. Maybe I could convince our ND to run it, but doubtful insurance would cover it. We've met our deductible this year, though, so that's a bonus!  

Most of the SWAMI secretor list vs. nonnie list shows mostly similarities, so I should count my blessings. Glad to know lentils and avocados are bennies for nonnies. Those will be good if my son could learn to love them. Especially avocados! What a gift those are! Yummmm...

As for SCD, I think it can be done in the context of SWAMI. We have nothing to lose at the moment.


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misspudding
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Post 8

Husband isn't very convinced all of this diet stuff is going to work. He gave me a sarcastic "good luck" last night. I was like, "What do you mean?" and he replied, "Well, who knows if it's going to work?"

He definitely has a point, but I know the alternative of just taking medicine is unlikely to work with DS because he's super sensitive to drugs like his mama. From the short amount of time taking the mesalamine/5-ASA drug (a derivative of aspirin), he seemed to get much worse (go figure...I get raging tinnitus whenever I take a baby aspirin). Now he's stable, at least. And we can't really tell if anything we're doing is going to help until he's off of the steroids. THREE MORE DAYS!!!  

It was like when DS was a baby. I was nursing, and he got sick on Tylenol when he was teething. We figured out removing Tylenol is what "fixed" him but then he couldn't gain weight on just nursing and baby food (veggies and fruits) alone. They wanted me to quit nursing completely and start him on an awful elemental formula, when he was about 10.5 months old. I said, "give me a few months". The nutritionist was adamant we do the formula. We introduced turkey, instead. The kid gained weight like a champ! I totally remember his pediatrician saying, "I have absolutely no idea what you did, but KEEP IT UP!!!".

I remember explaining that to people in the months that followed. "Turkey burgers? REALLY? And you're still nursing? When are you going to wean?" I kept it up until he was 20 months old. He gained weight like a champ. He was happy and healthy! And he never got sick or had problems until I had to wean. Oh, those were sad days. So much sickness. So many colds. But that was day care after me going back to work more than anything else. Hell, if I could give him the boob juice again, imagine what that would do for him now! Ha! Of course, it'd be creepy as all hell nursing a 9 year old...

That being said, my experience told me that the key to healing this guy is avoid the avoids, focus on the beneficials BIG TIME, and follow my gut instinct! I know we can do this. The nutritionist at the hospital (I like her a LOT more than our nutritionist the first time around, because she deals with kids with GI problems all of the time) said she's had enough kids get healed and off meds on diet alone that I know it's possible. I just have to stick it out. We can do this.

*deep breath*


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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Drea
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The gut is called our "second brain" for a reason. I hope you and DS find relief soon.


It is not my responsibility to convince anyone of anything.
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misspudding
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Indeed! Thanks for the kind words.


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Post 9

I'm feeling overwhelmed, but I still feel empowered. I feel like nutritionally healing the body is something I just get. I've read every popular diet book and approach over the years (and tried them all, sadly). So I take bits and pieces of eat diet that "makes sense" and try to use that approach here.

There's paleo, vegetarian, South Beach, the Zone, Dr. Perricone, etc. I really did try them all. Each time, I learned what worked for me and what didn't.

I think the thing the I love about SWAMI (and BTD/GTD) is it's about maximizing nutrition, minimizing inflammation, don't be super restrictive about food "groups" and eat the foods that make you feel good.

I hated that about vegetarianism and paleoism. Both times, I felt good by the good stuff I was eating, but felt awful because of what was missing.

This long rambly intro is because everyone really is different! Case in point.

Last night DS had one piece of well-cooked carrot. It really seems like it set him off big time, as it seems to have the last time he had it. I know it should be SCD compliant, SWAMI compliant, paleo and vegetarian compliant. Every diet in the world LOVES CARROTS! But...if I look at the Hunter diet, it's a black dot avoid for the first three months. Not that my son is a Hunter, but SWAMI isn't perfect, especially when you're dealing with a kid who is still growing (he's only 9, he could very easily be a Hunter). I still think he'll probably be an Explorer (the fingerprints don't lie, sigh), but it makes me think carrots are iffy for Hunters with compromised guts. And maybe he's a Hunter-ish Explorer? Who the heck knows. But...we're all individuals here and until he feels better, I think we're going to limit the carrots in the short term until he shows really strong signs of gut healing (namely, that his daily nosebleeds end).

That's my little observation for today. Dr. D's plan is the most individualized out there, but we're still very much unique. Until someone invents a DNA-sequencing machine that also sequences your gut microbiome while it's at it, everyone is going to have a different diet and different tolerances.


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Jane
Friday, June 13, 2014, 3:37pm Report to Moderator Report to Moderator

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Carrots are the thing that bothers me the most when my UC is active.  As I mentioned in the other thread, I've been going through a minor flare although today I feel considerably better.  I think the Canasa helps more than anything.  
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Carrots, very interesting! I'll keep that in mind, for sure. It really seemed to screw him up, that's for sure.

Does broth made with carrots mess you up? I assume the fiber gets pulled out when you strain it.


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misspudding
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Post 10

Extremely bummed right now. DS has bad bloating and diarrhea today.

We've been taking L-glutamine on and off to try to heal his gut, and it seems to make him worse. I know it gives me a raging migraine and tinnitus when I take even a tiny bit (Explorer much? Haha...). I read somewhere that yeast/candida can use L-glutamine as food. Not sure how that's possible, but given that the handful of times I've tried to get DS to use it, he's had more bloating.

I was so excited, too, because he came off of the steroids yesterday, and now this. Is it possible that now that he's off of the steroids, he's having some kind of weird die-off because his blood sugar is probably a lot better and his immune system isn't suppressed? It's so very, very frustrating.

I don't just want to just give him meat and broth for the next week. But what to do? As much as he does fine on meat, he seemed a little better on the low-fructose smoothies I started making him, at least for the first week (we'd been doing one 4 oz. in the morning and one 4 oz. at night since Tuesday). Just a 1/2 cup of homemade almond milk (almonds, water, sea salt), about 5 blueberries, 8 raspberries, and half a small banana (all bennies or diamonds). I didn't think it'd be enough to create a massive yeast situation. But I guess that's the nightmare of corticosteroids.  

I did remember reading somewhere tonight in one of the candida discussion threads that Dr. D. recommended more variety than the "candida diet" that makes the rounds on the internet,  because since O blood types are so prone to yeast to begin with, it makes more sense to get the immune system backed off and inflammation down more than trying to obliterate the yeast. But in the short term, I'm at a loss.

We do find out stool testing results in the next day or two, so we'll hopefully have some answers. I am wary of Nystatin and the other drugs. My own experience is that I get a flare up in yeast (athlete's foot, acne, etc.) when I don't limit the sugars in my diet and when I've been on oral contraceptives. My OC years are behind me at this point and my biggest trigger these days is red wine. When I've tried to just treat the symptom, athlete's foot for instance, after 14 days of a cream, I'm okay for a few weeks and then...bam! More athlete's foot. That is, if I don't avoid my triggers.

On we go in the effort to heal the gut.


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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ABJoe
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Healing (gut or otherwise) isn't a straight line proposition...  It is not all better, better, better - there are some ups and downs.  You have to keep doing the good stuff and take the good with the bad.  Usually, when I have (or have had) the worst symptoms, the most benefit was happening.  It is very uncomfortable at the time, but this seems to be how healing goes.

I found that excessive limiting of sugar intake caused inadequate cellular energy so that the cells weren't eliminating waste.  When I added beneficial sugars back into the diet, the waste load was overwhelming.  My suggestion is to keep with the recommended portion size and frequency and the gut healing modalities - especially since the steroid use has ended and just get through the rough patches.


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Thanks, ABJoe, for the insight. That is really helpful. I know how poorly I do when I restrict carbs, so I think you're right in that regard.

It's so frustrating. I hate seeing him in pain and just want him to feel better right now.


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Quoted from misspudding
It's so frustrating. I hate seeing him in pain and just want him to feel better right now.

I understand.  We have some of the same issues at our house and constantly fight to get more veggies into "the kid"...  One way that may help is to get the Live Cell supplement from DPN:
http://www.4yourtype.com/prodinfo.asp?number=BT009O


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Post 11

Well, a lot of things have changed since I last posted on here.

DS is totally off of steroids. It seems like his main symptom, stomach pain at night upon laying down, was probably heartburn or the beginnings of an ulcer. Supposedly, the same pathways how NSAIDs cause ulcers are the same for steroids. Regardless of whether or not the anti-inflammatory is non-steroidal or steroids...there's similar risk.

Gradually, over the course of a few weeks, his stomach pain has become much better at night! He has no pain, for the most part, during the day anymore. It's wonderful.

We began a SWAMI-fied version of the SCD diet the day we stopped the steroids. Aside from the aforementioned carrots, he's tolerating most foods well, even more fruit than he used to in his FODMAP days. It's pretty likely his problem with FODMAPs really was SIBO. It's pretty cool how he's trying a lot of foods he wouldn't consider in the past. Raspberries, cherries, pomegranate, almonds, macadamias...

We are doing SCD because it seems that it supposedly has the quickest results for changing gut bacteria. I think SWAMI would probably work over several years, but staying off of grains and root veggies, at least in the short term, is really helping keep his negative symptoms down.

Since his gut seems to be healing so quickly, his everyday nosebleeds are almost entirely gone! This is huge because it means the bacteria in his gut are helping him absorb vitamin K! It must mean his intestinal lining is healing enough for very good things to happen.  

Two other big surprises for me during this whole journey:

I've dropped 17 pounds in two months. Mainly just avoiding the one thing I used to still eat a lot of: corn. Even with all of the stress, which normally packs the pounds on! I always felt bad for DS because he couldn't have bread or other normal stuff his friends could eat, so corn and rice were easy options. I suspect corn was a big trigger for my son's IBD.

I figured mustard couldn't be so bad (it's SCD legal), and I was feeling bad my son couldn't have ketchup on his burgers like all "normal" kids. Well, I let him try it a couple of times and...each time, his symptoms flared up! That was surprising to me, but not really, since Dr. D. has been telling us O's to avoid vinegar for years. Again, if your gut is injured, vinegar really is not your friend! Avoid!

Hoping for more good things. I'm very pleased so far with the food as drug approach.


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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Andrea AWsec
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Misspudding give him one tablespoon of carob powder in water add some agave ( like a hot drink) if needed great for diarrhea/loose stools and gut health.

   I watched Dr. D prescribe it--

http://www.ncbi.nlm.nih.gov/pubmed/2723939

http://www.youtube.com/watch?v=ptC2EJf5kzM


MIFHI

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"Healthy people have the least overt symptoms from eating avoid foods." Dr. D'Adamo
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misspudding
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There's enough science behind SCD that it's convinced me we need to avoid excess sugar, including agave. I'm trying to stick to things that overlap on both SCD and SWAMI. Carob isn't one of them, unfortunately. When his symptoms have cleared up entirely, I'll look into carob. I love the stuff!


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Andrea AWsec
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actually the cure for the symptoms is the carob why wait?

the agave was just to make it easier to take for your son-- u don't need the agave.


MIFHI

"Do not try to satisfy your vanity by teaching a great many things. Awaken people's curiosity. It is enough to open minds; do not overload them." Anatole France

"Healthy people have the least overt symptoms from eating avoid foods." Dr. D'Adamo
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misspudding
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I hear you, but we're doing strict SCD at the moment to make our GI doc happy (he wanted DS on meds but when he turned out to be sensitive to them, he gave his blessing for diet only, but only if we did strict SCD for several months).


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misspudding
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Post 12

Two steps forward, one step back. Every day, every week.

We started branching out from the pure beneficials list in SWAMI, adding some neutrals, but it was too much, too soon.

Since we live in the Pacific Northwest, it's cherry and berry season. My son loves cherries! They didn't seem to make him sick at first, but since his gut is still barely healing, too much too soon set him back somewhat.

I have since learned, from some folks who run an SCD website, that after bananas, you have to be careful with fruits high in salicylates. I didn't realize that salicylates are a kind of phenol. I remember reading in the GTD book something about how phenols are a ground of foods that can provoke sensitivity in folks like my son and me. Well, this SCD website indicated that phenols just go straight into the bloodstream in folks with an irritated gut, which causes an increased immune response. It absolutely seems to be the case with my son. It also explains why he absolutely didn't tolerate the 5-ASA (a salicylate) drug the GI doc wanted him on. SO FASCINATING!

So we'll continue on our bananas and highly beneficials list for now (which really only includes pineapple at the moment) and go from there. The good news is that every day, he gets stronger and healthier. The setbacks are fewer than they were. We're definitely learning a lot.


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Post 13

Met with the nutritionist today. DS is up in weight and has grown 1/3"!!!! Since June!

Tomorrow we meet with our naturopath to figure out how to start toning down the diarrhea. Technically, his poops aren't liquid, but he's just having such urgency and frequency...it's not "normal". After 2 years of constipation, this is just such an odd problem to have. We're going to start up the folate, finally, after three months on methyl B-12. Hopefully, that'll get the neurotransmitters in gear so his gut finally calms down. Having an MTHFR gene is no fun...there's always a gut problem with MTHFR.

This has been such a great week. I've finally figured out the phenol/salicylate piece of the puzzle (http://www.dadamo.com/cgi-bin/Blah/Blah.pl?m-1405453568/). We're getting solid gains. It's a marathon, not a sprint.


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Quoted from misspudding
Technically, his poops aren't liquid, but he's just having such urgency and frequency...it's not "normal". After 2 years of constipation, this is just such an odd problem to have.

I don't think it unusual at all...  As the gut starts working properly again, there are variations between the limits. Also, when the body dumps large amounts of toxins, quite often it is rather frequent and urgent...


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misspudding
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Yeah, I don't mean "odd", just after two years of constipation, it's a very different problem to have!


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Post 14

We saw our naturopath today and she had the results of DS's stool sample from back when he was still on steroids.

Surprises: No pathogenic yeast! No pathogenic bacteria. No parasites. Still really shocked about the yeast because DS still gets some gas and occasional minor pain, but I guess that's just undigested food being broken down by good bacteria (gas) and inflammation (pain).

Beneficial facultative anaerobic bacteria were at okay levels. Beneficial obligate anaerobic bacteria were incredibly low. Since the obligate anaerobes are the ones that tend to benefit from prebiotics and fiber, our ND indicated that he needs more fiber. I guess it's not all that surprising that two years on a low FODMAP diet would do that. It's just more proof that we were dealing with SIBO. *sigh* The two fibers she recommended were beta-glucan and arabinogalactan, surprise surprise.

More interesting stuff about the obligate anaerobes, they tend to do a lot of the conversion in the gut for things like butyrate and short chain fatty acids, which are very good for the gut. Without those critters, you get prone to inflammation or leaky gut, which can of course lead to inflammatory bowel disease. Obviously they convert things like vitamin K and biotin for the body to use. DS has been battling nosebleeds for at least a year, but especially so the last month. They're finally remitting (last one was over a week ago...sure beats several every day!). Interestingly enough, my sister and I have battled acne for years (hers was especially bad). DS had cradle cap until he was at least 6 years old (once a kid isn't an infant anymore, it's called seborrheic dermatitis). Biotin is one of the vitamin supplements recommended for both. It really is all about gut health, isn't it?

Beginning today, DS is taking an SCD legal probiotic and we're going to pick up some prebiotics. I know Dr. D. has recommended arabinogalactan (larch) extensively, but I can't find it on any of the SCD legal lists. I have found that beta glucan is approved on SCD. Our ND gave us a link for a yeast-derived beta glucan (oats and barley are the other two big sources beta glucan comes from, both are avoids for my DS). In any event, beta glucan seems to help the body activate a form of compliment (C3) which tends to be deficient in inflammatory bowel disease. The idea is that compliment isn't doing its job keeping the microbes at bay, so the acquired immune system launches the big guns and the collateral damage on good tissue is too much. I suspect arabinogalactan acts the same way.

DS is doing much better, gaining weight, and we finally have some solid science as to why he was so sick. I'm cautiously optimistic.


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer

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misspudding
Saturday, July 19, 2014, 8:04pm Report to Moderator Report to Moderator

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Ee Dan
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Location: Seattle
Age: 37
Post 15

We started a probiotic. His ND really wanted him on a Klare Labs formula, and they do have an SCD-safe one with no starch or FOS, so we started with it. We had been doing a general L. acidophilus and L. rhamnosus probiotic for a few months and he tolerated it just fine. But it was a general kind that you get at the local health food store, and it only had 5 billion CFUs (colony forming units) per pill. This new one was 23 billion CFUs per pill. That's a lot of bacteria.

Well, I made the mistake of giving him one full pill to start. I don't know if it's that it's not a blood type specific formula, or that it's so many CFUs, or that there's some kind of "die off" going on, but he had some gas and pain that night. Backed off to 1/3 of a pill the next day, did better. Still not great, though, so stopping it for the time being until no symptoms, then restarting at a low dose. Our other probiotic has potato starch in it, so it's verboten, even though he tolerated it.

Since we have to do SCD right now to appease our GI doc (and I'm totally on board with it because it is helping), I feel like this is our best option. Polyflora has chicory in it, which isn't allowed. I know I get gas (minor, but still) from chicory, so I have a feeling it would seriously make my boy miserable at this stage in his healing. Still don't know if larch is okay on SCD. Wish I could find an answer somewhere, since it seems to be such a great fiber.

Healing the gut is such a pain in the butt. Literally. Oh well, at least our good days are more than our bad days, and that's pretty fantastic compared to the last year. Still no nosebleeds for a couple of weeks, so that's good. I'll take it!


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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misspudding
Monday, July 21, 2014, 9:04pm Report to Moderator Report to Moderator

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Ee Dan
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Post 16

Oooh, we may have turned a corner with how well DS has been healing. Still no nosebleeds for weeks. And he's done cooked fruits and juice with a high polyphenol content (grape juice, pomegranate juice) with no problems! He also seems to be tolerating raw fruits with low polyphenol content with no problems.

Also, he spent 5 hours at a friend's house yesterday for a birthday party. They had a snow cone machine that made snow cone ice that my son was able to do grape juice with. He loved it! And he's able to tolerate almond flour muffins with no problems. Very nice!

I can't imagine where we'd be if he had spent two months on mesalamine with no diet changes. I'm pretty sure he'd be back in the hospital. So glad we're able to do this with diet. I know not everyone responds 100% immediately to diet intervention...for a lot of people it takes years, and some still need meds. I think I wouldn't have been so on board if a) I hadn't been so familiar with BTD/GTD (my endometriosis disappeared in two cycles once I was strict about being gluten free) and b) I didn't have an aunt who had IBD back in the 1960s who cured herself through diet. She's 75 and you wouldn't know it by how young she looks and how healthy her mind is. She has nothing but perfect colonoscopies these days. Alas, I digress...

Now the big goal for DS is weight gain. I've heard from a lot of folks in the SCD community that once you heal the gut, it all just "works" and people put on weight (if they need to) or lose it (if they need to). He's already grown a small amount (1/3" in a month, which could be statistical anomaly) but it's a good sign, nonetheless. Big sigh of relief for where we're at at the moment.


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misspudding
Monday, July 28, 2014, 5:53pm Report to Moderator Report to Moderator

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Ee Dan
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Post 17

I keep a gratitude journal lately so that I can keep track of the positive stuff that's been going on, so that I don't lose track. Because the occasional setback is just so hard. That's also why I'm keeping this "journal". So that I can keep track of where we've been, what I've freaked out about, and how much overall healing has been going on.

That brings me to today. Things have been so smooth for weeks, that it's been great. No nosebleeds, so much less pain, lots of weight gain. DS looks so much better than he did before. But there's the elephant in the room: encopresis. My son suffered from being so chronically constipated that his colon was very stretched out. We saw a specialist who, though we loved her and she was ultimately who helped with getting diagnosed with IBD, had a standard treatment protocol of laxatives and stool softeners. Most kids who don't have IBD respond pretty well to those treatments, since they tend to be more psychological than physical. Having had a stretched colon means, even with the best diet, a much greater volume of stool hangs out in his colon and unless he's incredibly compliant (whatever that means at the moment, I'm not entirely certain, because it depends on his gut health), he can get constipated again.

By constipated, I don't mean hard little pellets, or no poops at all. I just mean that he can't evacuate completely. He has 8-10 poops a day right now, so he's definitely pooping. But he's having accidents. He didn't for a while, and now he is. They're very small, but they indicate that his colon is full of poop. And I'm panicking. Because I'm thinking it automatically means we're back at where we were right before the hospital.

I don't know what it is, but I have some theories. I have a message into our ND this morning. She's seen plenty of kids with this problem, so I know she'll have an answer. I think we'll probably go back on a motility enhancer that contains 5-htp. What stinks is it gives him other side effects (headache).

Frustrated and scared. This isn't easy. I just want him to feel like a normal kid.  


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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misspudding
Tuesday, July 29, 2014, 3:48am Report to Moderator Report to Moderator

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Ee Dan
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Post 18

The 5-htp is helping. Our naturopath agreed it was the right thing to add at the moment. She said the next big thing is we really need to start that prebiotic fiber. Since I still have no idea on the larch and whether it's SCD legal, we're going ahead with beta glucan.

I need to remind myself (constantly, it seems) that one night of symptoms does not mean that everything is over. I just panicked since everything was going so well.

I went and bought myself some rhodiola this afternoon. I've taken it in the past and it's been so helpful in coping with stress. It took me a long time to figure out that rhodiola was the substance that was so helpful in a complex I took several years ago. In any event, I wish I had purchased it sooner.

Here's to progress! And gratitude! And rhodiola...


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misspudding
Saturday, August 2, 2014, 1:14am Report to Moderator Report to Moderator

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Ee Dan
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Post 19

Still doing good (knock on wood)!

He has had no pain for five days and he's down to 3-5 poops a day, which I think is on the high end of normal, even for me. Sweet!

He's up about three pounds from two weeks ago. He's eating like a champ. He's tolerating uncooked fruit just fine. He's not interested in eating eggs at the moment, except when they're baked into food. But he's not reacting to eggs (never did unlike like a lot of IBDers). Ghee is tolerated just fine, so I've been cramming it into almond muffins. He likes watermelon. Thankfully, it's a diamond on his SWAMI. I'm pureed it and turned it into a granita. What an easy way to get nutrition. Pomegranate juice, another diamond, is a big favorite. I'm only doing about 1/2 cup with a cup of water added to it, once a day. I figure that's enough even if it is a diamond.

I guess there's not much to update here anymore, except for when we go in for a pediatric GI appointment next week. I'm interested to see what his inflammatory markers are in his blood work.

Can I exhale now? Ha!


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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misspudding
Monday, August 11, 2014, 9:00pm Report to Moderator Report to Moderator

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Ee Dan
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Post 20


We had our follow up with the GI doc. He's happy with his progress. Up two pounds since last check up in mid-July. Grown 1/2 inch since June. Woo!

But he's been having constipation issues that have given him gas and bloating and make him not want to eat. The consistency of his stool is a-okay (type 4 and type 5 on bristol stool scale) but his colon is still so big, we think, that it's just not coming out fast enough. He's taking that motility enhancer with the 5-htp again and it's helping a lot. Keeping him down to 3-4 poops a day, which to me is perfect.

The biggest thing we're facing this week is allergies. It's been so much warmer than usual in Seattle (10-15 degrees above average for most of the summer), that even I'm having seasonal allergies (which is very rare for me). Ugh. Both DS and I have had red, itchy eyes and today he woke up with nasty congestion and just doesn't feel well. The high is supposed to be 93 today. When you don't have A/C (we usually don't need it), that stinks! I cannot wait for our usual rain and gloom to come back. Our bodies are so well adjusted to it that this summer feels not so great. Oh well...I'll be whining about the rain come January, I'm sure.

Hoping the rain returns soon (even if just for a day) and we all feel better!


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misspudding
Saturday, September 6, 2014, 1:08am Report to Moderator Report to Moderator

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Ee Dan
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Post 21

Overall, things are good. I am very nervous to weigh the boy, but he looks better overall, is eating a lot, and still doing pretty good (had one minor nosebleed a few weekend ago that I think was from picking his nose...who knows?!). Hubby checked his height earlier this week and said he looks about the same from a few weeks ago.

He entered fourth grade this week. I was seriously nervous that he wouldn't make it, or that he'd need to be picked up halfway through the day. He loves it. But it seems like stress (even good stress) is affecting him. Today, around lunch, he said he had a tummy ache. He hasn't had a daytime stomach ache in a long time. I really hate this disease...so many things can influence it.

Still having constipation and gas, but thankfully, the 5-htp mainly seems to be working on both. We just have to keep his system moving so bad bacteria don't overgrow in his system again. So hard to do...his ND said the 5-htp wouldn't be forever, something like 6 months to get things back to normal.

Unfortunately the amount of 5-htp he's on makes him have some urgency before bed, and even gives him a little pain. But it makes him poop. We've been toying with probiotic sources, too, which has also added to the fun. Can't do Polyflora, since it has chicory. We tried a SCD-specific probiotic from Klare, but it was way too overwhelming for his system. Now we're trying a fermented carrot/ginger/sea salt (just carrots, ginger and sea salt with water at room temp to get some bugs in there, and that's it...no real fermentation process...just a simple, raw product). He's not doing the carrots, just a smidgen of brine. The jury is still out on whether it's helping or hurting. Wish Dr. D. would give us a solid statement on whether cultured vegetables are okay as long as they're beneficial veggies. It would help for those of us who don't tolerate yogurt, sauerkraut, or probiotics in pill form. Oh well.

I'm hoping the next update will be able how he's grown ten inches. I don't think that will happen anytime soon. Ha!


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misspudding
Monday, September 8, 2014, 4:23am Report to Moderator Report to Moderator

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Ee Dan
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Post 22

Wow, weighed the boy tonight. He's 56 pounds! Up from 50 at the end of May! Yeehaw!!!


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misspudding
Friday, September 12, 2014, 5:00pm Report to Moderator Report to Moderator

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Ee Dan
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Post 23

Okay, so we're slowly slipping back to symptoms like we were in the spring. Such a bummer! Doesn't really seem like it's the 5-htp, as we increased it, then decreased...seems bigger picture.

Naturopath said SIBO can be a real pain to overcome. She said it usually takes 2-4 treatments (antibiotics or natural antibiotics) to get over the hump, if you will, and finally get to mostly normal. I don't think he's having accidents at the moment, but he has pain at night/in the morning. So we're going back in for breath testing in the next few days.

It's really frustrating. I think a lot of it is stress. I've heard from a lot of people in the IBD community that stress is the biggest single factor in their health. So many have achieved really great success on diet (to the point of remission in many cases) and their jobs or personal lives give them so much stress they have a flare. I know school is good for him and he enjoys it, but I do think it's provided enough stress to have a negative impact on his Crohns. *sigh*

Well, at least I'm hopeful. He's achieved so much (remission, basically) in the last few months. We just need to keep his gut moving so that the bad guys (or even the good guys) don't overgrow again. Staying positive!


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misspudding
Wednesday, September 17, 2014, 7:50pm Report to Moderator Report to Moderator

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Ee Dan
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Post 24

Breath testing today. Couldn't make it past the baseline breath test, his gut bacteria are producing so much gas. Big bummer, but thankfully, that's the answer and not something more serious.

Oh well...at least we know now that we need to keep his motility going after whatever treatment we do for the SIBO this time around. And keep doing that until his colon finally shrinks enough that he doesn't have all of that stuff in him causing the SIBO, causing the motility issues. And then we can finally start him on the methylfolate, which will totally get his body producing neurotransmitters so he doesn't have motility problems anymore! Hard to believe that probably won't be for almost another year. Sheesh.

Guess it takes years to get in such bad health, it's not surprising it takes a long time to reverse it. Oh well.

Here's to hoping he feels better soon!


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misspudding
Sunday, October 5, 2014, 11:45pm Report to Moderator Report to Moderator

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Ee Dan
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Post 25

Very bummed. Last time we did breath testing for SIBO, we followed it with rifaximin and a bowel cleanout. It was very effective and the followup breath testing was negative.

This time around, we only did rifaximin and it seemed to help, but the ND wanted to followup with a botanical antibiotic to address the methane producing bacteria (rifaximin seems to only work on hydrogen producers...so they usually do rifaximin + neomycin for constipation). I'm reluctant to do neomycin because it tends to cause hearing loss and I've had problems with that my whole life, but rifaximin seems to have a great safety profile (and in our experience, it's been fine).

The botanical antibiotic we were using was artemisia annua (sweet wormwood, not be confused with the absinthe variety of wormwood). Well, on the artemisia, DS's symptoms seemed to get worse. ND thought it might be die-off so said to stop for a few days then start up again at half dose. Well, it'se been a few days and still has gas/tummy pain.

And we're back to accidents, too, as of today.

I am so tired of this constipation/SIBO/Crohn's c**p! I just want my kid to be healthy and happy again. I want to quit this SCD and get my kid on sweet potatoes and brown rice and seaweed and all of those things that make me feel better, but then I keep hearing stories from other BTD-ers who have done SWAMI with SCD and it's been what works for them.

I would love to do the O Polyflora probiotic, but chicory is a black dot avoid, so staying away from it.

That's the update. I have no freaking clue what we're going to do next.


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ABJoe
Monday, October 6, 2014, 12:11am Report to Moderator Report to Moderator

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You mention the stress as one possible factor causing the SIBO issue to return.  One other issue that is probably having an effect is cleaning out waste from the body.  There is a great capacity for storing waste when the bowel isn't working well, but all of this junk starts being cleaned out through the lymph system etc., when the bowel starts working again, that it often overloads the system and causes SIBO to return.  Keep doing what worked to continue to beat it.  I know it is frustrating when it seems like you do 2 steps forward and 3 steps back, but he'll keep hitting higher highs and higher lows - although it will continue to be up and down.


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misspudding
Thursday, October 16, 2014, 6:00pm Report to Moderator Report to Moderator

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Thanks, ABJoe! Didn't see your post until now.

I'm sure stress is a huge component. He did really well for several months and then after a week at school, it all started coming back. Appreciate your kind words.


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misspudding
Thursday, October 16, 2014, 6:08pm Report to Moderator Report to Moderator

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Post 26

Well, here we are. Kind of back at square one, but dosed up with turmeric and fish oil and methyl B-12 to avoid another flare.

What we failed to take into account back in May was that DS had encopresis, which is being so backed up your colon expands to make room. It's painful. He tried a go with Miralax that just made things worse. Ultimately, mineral oil and magnesium are the tools that seem to work best.

The miralax seems to break down into food that feeds the really bad bacteria (the methane producers).  I know this from my own line of work. So it is verboten from here on out, except in a hospital cleanout scenario (where they give so much via mouth tube that it just works). All of his specialists know this.

Unfortunately, what ended up working back in April, when he was hospitalized, was the hospital cleanout. It seems like that is ultimately what made him feel better. So after that, when we were in the hospital, I said to one of the docs, "so, we still need to keep giving the magnesium and oil, right?" to which the doc said, "Oh, no. Well, you can, but you really don't need much now." In some ways he was right. But we had an encopresis specialist we were working with who just dropped off of the case when he was diagnosed with Crohns. She said, "That's his problem, not constipation. You don't need me anymore."

Unfortunately, we do need her. Our main pediatric GI doc said, based on his amazing bloodwork at the end of August, "This isn't classic IBD, I don't think. Maybe it was constipation induced colitis? I mean, that could happen, in theory."

So, we're going for an X-ray today (boo) to determine how backed up he is. After that, we'll either do the standard cleanout we tried before April, for a few weeks, and if that isn't enough with the special diet, than we'll be doing the hospital cleanout again. Which should make him feel better! But after that, we'll need to keep him in motility enhancers and stool softeners for probably the next year, along with special diet.

It's so frustrating, but I have seen him feel better and I've seen what works so far! I know it's just a matter of sticking to it and following the diet, and keeping the stress down. I'm hoping by this time next year, it will all be just a bad memory!


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Mother
Thursday, October 16, 2014, 11:08pm Report to Moderator Report to Moderator

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None of the fiber type things work for me at all. I know other forms of magnesium are recommended but mag oxide works all the time. 750 mg, I think it's Natures Bounty from Walgreens or Walmart. Cheap and VERY effective. Take just before bed with a glass of water. It is the only thing that works consistently. It might take 2 or 3 days for results and then you are home free.


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misspudding
Saturday, October 18, 2014, 5:04am Report to Moderator Report to Moderator

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Quoted from Mother
None of the fiber type things work for me at all. I know other forms of magnesium are recommended but mag oxide works all the time. 750 mg, I think it's Natures Bounty from Walgreens or Walmart. Cheap and VERY effective. Take just before bed with a glass of water. It is the only thing that works consistently. It might take 2 or 3 days for results and then you are home free.


Yeah, his problems are bigger than just a little magnesium every now and then, but I agree.


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misspudding
Saturday, October 18, 2014, 5:11am Report to Moderator Report to Moderator

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Post 27

Saw our old encopresis nurse specialist today after an X-ray. He's as backed up as he was a year ago. But the good news is he isn't flaring (yet). So we're starting up on a non-Miralax cleanout with mineral oil and milk of magnesia, then we're conferring with the gastroenterologist to see if he can handle senna or biscodyl on the weekends.

We may just have to do a hospital cleanout again like we did prior to endoscopy and colonoscopy in April. It was so effective. We know Miralax makes him sick and now I'm thinking the Miralax induced enough constipation and methane that it triggered the leaky gut which caused the Crohn's flare. I think for 95% of the population, a simple dose of Miralax gets rid of the occasional constipation, but if you're dealing with severe constipation (encopresis) with almost no motility and a SIBO set up, the methane-producing bacteria can break that polyethylene glycol down into the glycol and eat it up like any other carbohydrate or sugar alcohol. They just release more methane (which has the effect of slowing motility down even more). I know this from my own line of work with chlorinated solvents in groundwater...nothing will touch that stuff, but the methane-producing bacteria will. They're one of the only effective remediation strategies. They'll break ANYTHING down.

I really need to get a kickstarter going so someone will send me back to school to do a masters or PhD in microbiome or toxicology research. Will anyone fund me?! This is my new obsession and all of the health care specialists we've dealt with have said that it's a plausible theory. How cool would it be for me to fix a bunch of other kids out there?! I HAVE MY MISSION, GOD!


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Mother
Saturday, October 18, 2014, 1:27pm Report to Moderator Report to Moderator

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Misspudding,

I wasn't suggesting a little magnesium every now and then. I was suggesting EVERY night and in  the form of oxide. Very little magnesium is absorbed in oxide. It pulls water into the colon and keeps things soft and moving. Far more effective than milk of magnesia as that can make things TOO loose and then the next few days are more distressing. Miralax makes me more constipated. I need NON bulk forming laxatives, such as mag oxide. Senna, phsylium etc all make me much worse. Again, I need no more bulk, but the opposite.

My Mom's Dr told her about this many years ago and it has worked for me as well as many people I recommended it to. They are amazed at how well something so simple, non habit forming and cheap ended their long term struggles with constipation.

Obviously it's your call


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misspudding
Saturday, October 18, 2014, 6:04pm Report to Moderator Report to Moderator

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Ahh, I see. I also was trying to say it's not just magnesium that he needs. That's great for stool softening, but he also needs a stool lubricant (the oil) and something to actually contract the colon muscle wall. Encopresis means his colon is stretched out and it can take years to shrink back down.

Milk of magnesia is the only one his nurse specialist allows because it's not hard on the kidneys (it's just magnesium oxide reacted with water), and it tends to be gentler (but we still give big doses because it's effective). He's still a kid.

Thanks for your suggestions! This is a long term, complicated problem that needs specialized care, unfortunately. I'm still pretty hopeful the magnesium and oil will do the trick!


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misspudding
Monday, October 20, 2014, 11:45pm Report to Moderator Report to Moderator

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Post 28

What a difference! He was just constipated! After the first night on the magnesium and mineral oil, he felt a lot better. Been getting better since then! (We're at day 4.) Before Friday, most nights and mornings he was at a 6 out of 10 on pain. Now, most of the time, he's at a 0 to 2.

Whew! I think we're finally figuring things out, hard to believe (and knock on a REALLY BIG PIECE OF WOOD). Man, I hope no one has to go through what he's gone through. Gut issues stink!

I hope that any folks who might read this who deal with encopresis in little ones realize that it takes years of proper diet, stool softeners, and/or motility enhancers to get proper colon size and function back. Why our gastroenterologist and his team didn't realize that, but a nurse who has done this work for 20 plus years figured it out, I have no clue.

Our nurse specialist used to work with our gastro's department until they closed it because it didn't make enough money. Encopresis is primarily a psychological thing (kids get scared of the way a big hard poop feels when they're little, so they hold it in, and it just gets worse). So it's kind of like seeing a therapist to work through a mental issue. At the same time, the treatment other than the mental part, is just frequent sits on the potty, keeping a log of everything, and some cheap over the counter stool softeners. Not a lot of money there.

I know the gastro is going to want him to have a bunch of blood work to rule out a flare. He's not flaring (no temperature, no crazy insane bloating that makes him look like a pregnant woman), he's just constipated...but I know it's probably too risky to not check. Sooo...


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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A HealthNut
Friday, October 31, 2014, 2:42pm Report to Moderator Report to Moderator

Early Spring: Awareness, desire.
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Hi, I use to be on the site several years ago but when my computer crashed and I was unable to sign in I drifted away for several years. So I have recently pulled my ERFYT book back out again and starting from scratch as my digestive system has been disrupted and aggravated.  Please excused me if I am asking a repeated question. I read thru some of the threads and did a search but nothing came up so here are my two main question for A's.

For healing the stomach I have read that pre digested fish capsules have had good results. I need healing and would like to know if anyone(especially A's) have any feedback on this.
My other concern is for a additional fiber... what is a good supplement to help in this area. I know you are going to respond by saying eat more fiber foods which I do as a vegetarian diet but I still need a supplement so please help with this.

Thanks for your help.
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Jane
Friday, October 31, 2014, 5:20pm Report to Moderator Report to Moderator

Kyosha Nim
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Are you talking about Seacure?  
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ABJoe
Friday, October 31, 2014, 9:30pm Report to Moderator Report to Moderator

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Quoted from A HealthNut
For healing the stomach I have read that pre digested fish capsules have had good results. I need healing and would like to know if anyone(especially A's) have any feedback on this.

I ahve no information about pre-digested anything, but if you are having digestive troubles, there are several suggestions:
1) Eat a highly beneficial foods diet with NO avoids.
2) Incorporate lemon juice and water into your day, every day.  Dr. D. recommends starting the day with it to help loosen the waste, etc...
2) Supplement per appropriate protocols:  http://www.dadamo.com/protocols/index.htm
The most appropriate may be Healthy Stomach, Intestinal Support and/or Yeast/Fungal Support protocol...

Quoted from A HealthNut
My other concern is for a additional fiber... what is a good supplement to help in this area. I know you are going to respond by saying eat more fiber foods which I do as a vegetarian diet but I still need a supplement so please help with this.

The most healthy and safest fiber supplement is Larch.  Dr. D. has a supplemental fiber called Ara6.
http://www.4yourtype.com/



RH-, ISTJ
Wonderful Wife = A+ Teacher; Darling Daughter = A- SWAMI Explorer

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ABJoe  -  Friday, October 31, 2014, 9:49pm
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misspudding
Wednesday, November 5, 2014, 9:58pm Report to Moderator Report to Moderator

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Ee Dan
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Larch is a FODMAP and some folks can't tolerate it at first (or at all, per some of the posts I've read on this board). Beta glucan is a prebiotic fiber that my son seems to have no problems with. You could also eat whatever beneficial mushrooms are on your BTD/GTD/SWAMI. Since you're an A, you might be okay with oats, which also have beta glucan fiber. But it's obviously an individual thing.

As for the Seacure capsules, we didn't notice a major improvement, likely because my son was out of his flare. If you are having an active flare, Seacure would probably do wonders (a lot like bone broth or an L-glutamine supplement would do...we can't tolerate L-glutamine, though, so Seacure is nice to have).


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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misspudding
Wednesday, November 5, 2014, 10:09pm Report to Moderator Report to Moderator

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Ee Dan
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Post 29


We're just rolling along here. DS is still on a pretty big cleanout protocol via the nurse specialist and is kind of miserable. We at least stepped off of the senna/bisacodyl bandwagon and are just doing mineral oil and milk of magnesia. Time will tell if it was effective or if we need to do the hospital cleanout again. Waiting to hear back from our nurse.

Surprisingly, the gastroenterologist just said, "Yeah, constipation is common in IBD. Do whatever you need to do." I would have expected he'd want blood work and everything, but nope.

The good news in all of this is diet is working really well. He's finally up enough in weight that the nutritionist was really, really happy (went from off the growth chart to 11th percentile in six months!). Every time she gets a patient who heals solely on diet, without meds, she gets so happy. And she shares the news immediately with the gastroenterologists. She's part of their team, but she's always so thrilled to see food working wonders where expensive pills couldn't. I have to admit I really like her a lot. She's our biggest ally with the MDs.

So now we wait to see whether or not the cleanout worked this time and get this kid on some supplemental vitamin D. His baby teeth have a ton of cavities, and I'm really concerned about his bones at his age. I know he's got some time before we really start panicking (he hasn't hit puberty yet), but I'd like him to not get osteoporosis ever. Thank god he has really big bones like his mom.


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A HealthNut
Thursday, November 6, 2014, 3:47pm Report to Moderator Report to Moderator

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Quoted Text
[Are you talking about Seacure?


Yes.
I have been having such a bad bought with my IBS-Constipation that I have not been able to eat anything. Especially proteins which is in so many foods. I have basically been eating all beneficial and a few neutrals(veggies/rice/fruits). Juicing 1 & 2x's a day. When I eat protein it does not digest in my digestion system. I have been taking enzyme's to help with this problem but I feel I needed protein to help heal my intestines(possible leaky gut). I had read such good feedback with the predigested white fish that I am so desperate for help. I have seen a natural doc that is working with me but it gets quite expensive out of pocket for this kind of help.

Anyway I just received the capsules in the mail yesterday and I took 2 last night and 2 this morning. It says you can take up to 6 a day but I have learned the hard way to take it easy on new supplements in case my body does not respond well.

For the recommendation of Larch. Not sure if this is the same as FOS or not but I do not do well this this.

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ABJoe  -  Thursday, November 6, 2014, 3:53pm
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misspudding
Friday, November 7, 2014, 12:23am Report to Moderator Report to Moderator

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Ee Dan
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Good luck!

Consider bumping up your fats and a magnesium supplement if you haven't already. Even just taking some spoonfuls of olive oil during the day might help. My son's case is much more dramatic, but those are two's things that really help.


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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A HealthNut
Friday, November 7, 2014, 4:06pm Report to Moderator Report to Moderator

Early Spring: Awareness, desire.
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Thanks, I will let you know how it goes. The juicing is the best.

I have read you need 50 grams of protein in a day and there is no way I could ever take in that much protein. I am lucky to get 10 grams. I do ok with pinto beans, few nuts... pumpkin seeds and sunflower seeds, and avocado that is about it. Otherwise I will get lots of uric acid in my system and in my blood stream which feels horrible.

I tend to eat a lot of Mexican food with beans, rice, and avocado. Some gf tortilla chips.(no cheese, sour crème, flour tortilla, or salsa) This is the one meal I can eat and seem to do ok. Otherwise just veggies.
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misspudding
Friday, November 7, 2014, 8:08pm Report to Moderator Report to Moderator

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Ee Dan
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Also try and bump up foods with folate. A lot of us with gut issues have an MTHFR polymorphism that makes us not produce certain neurotransmitters well. That affects motility, big time.


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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misspudding
Thursday, November 20, 2014, 10:24pm Report to Moderator Report to Moderator

Rh-, MTHFR, SWAMI GT4 Explorer, ENTP rationalist
Ee Dan
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Post 30

We're about a month into the encopresis "cleanout protocol" and everything's going pretty well. DS had a follow up x-ray on Monday and it looks like the hard stool is more than half cleared out. Thank goodness!

His nurse specialist said, "Now he's just severely constipated!"

I am so thankful she's back on board. And now that we've gone through this, I would never give my son Miralax (polyethylene glycol) ever again. We did this last year, but instead of using magnesium, we were using Miralax. Every time we'd bump up the Miralax because he wasn't getting effectively "cleaned out", he'd get sicker. Finally, the one last ditch effort to really increase it seems to be what led to his Crohn's flare back in April. We're only a month in and we're having far more success than we had in six months with Miralax.

I know that a lot of people get success relieving constipation with Miralax, but I know of a significant subset of folks who gets worsening symptoms on it. But the FDA continues to accept it as GRAS (generally recognized as safe). I think it's a lot like MSG or aspartame...for a majority of folks, these things are GRAS, but for, let's say 5% or 10% of the population, they can be very bad. I just really want to figure out who those people are and prevent them from an IBD diagnosis.

I'm thinking of doing a kickstarter so that I can afford to go back to school and do either a toxicology or microbiome/genome science type PhD with that as my dissertation. Toxicology might be an easier transition from my background as an environmental geologist. Sort of a pipe dream at the moment, but I'm becoming more serious about it every day.


Me: Celiac type gut problems; seizure disorder; MTHFR  DS: O negative; "atypical" IBD - SWAMI 44% Explorer
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Jane
Friday, November 21, 2014, 5:14pm Report to Moderator Report to Moderator

Kyosha Nim
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Glad he's doing better, MissP.
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misspudding
Friday, November 21, 2014, 6:40pm Report to Moderator Report to Moderator

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Ee Dan
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Thanks, Jane!


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