Following up on reading the recent thread about soaking nuts and grains, I started reading about digestive malabsorption, and that let me to these articles about Celiac disease:

http://wiki.medpedia.com/Celiac_Disease
http://www.webmd.com/digestive-disorders/celiac-disease/celiac-disease-symptoms

All this time, I've been thinking that, if you have Celiac, you just get suddenly and obviously sick whenever you eat ANY gluten.  I figured I must just be gluten sensitive instead, since that doesn't happen to me.  Man was I wrong!

So now I'm thinking that I probably DO have Celiac disease after all.  It explains my inability to gain weight, my fatigue and muscle weakness, and my cycling levels of energy (not to mention other stool symptoms) .  I guess this means I'll be ratcheting up to a new, stricter level of compliance:

Quoted from Medpedia

In order to stay well, people with celiac disease must avoid gluten for the rest of their lives. Eating any gluten, no matter how small an amount, can damage the small intestine. The damage will occur in anyone with the disease, including people without noticeable symptoms....Some people with celiac disease show no improvement on the gluten-free diet. This condition is called unresponsive celiac disease. The most common reason for poor response is that small amounts of gluten are still present in the diet.

My main reason for posting here is to increase awareness.  I figured that many of you might also be unaware of the full extent of symptoms!

Thanks for sharing.  I found out through the process of elimination that I was wheat/gluten sensitive.  I will research further now.

Hi,

I am working on a documentary about Celiac Disease/Gluten Sensitivity and the path to optimum health.
From my understanding and personal experience, gluten sensitivity can manifest itself in many symptoms similar to celiac. I had a stool test done and saliva swab for the genes (which 30% of population has).

Turns out I do not have the genes. But had many issues related to the symptoms of celiac.

The diagnosis for celiac is done through a blood test (while on gluten), if that is positive, it is followed up by an intestinal biopsy to verify damage.

I would never go back on gluten to have a blood test done anyway. I know the results of eliminating gluten never would be worth giving up.

I had opportunity to interview Dr. Alessio Fasano of the University of Maryland Center of Celiac Research, who encouraged this testing for accurate diagnosis before going off gluten. The stool test results could not be reproduced by their center, leading him to believe they are innaccurate, and the blood tests can only be done when on gluten. http://www.celiaccenter.org/

The alternative is to live "as if" one has celiac avoiding all gluten.

Not sure that gluten itself has any special benefit, other than wheat products are overflowing in our culture and they have a nice texture, taste good, etc. The main issue, for celiacs, is that this product is just about everywhere, is somewhat "hidden" in things when eating out -- and cross contamination could be an issue.
Labels on processed foods have become fairly clear about wheat. There is also a level of this hidden or cross contaminated gluten that is considered "safe" for celiacs and there are labeling guidelines in the works that will address that.

Gluten is indigestible for everyone. It can, however, get through the gut (most notably in people with celiac or leaky gut) and cause a whole host of issues. Dr. Fasano talked about in his lecture that gluten can cause issues in the brain. (I was having incredible brain fog.)

There are other lectins in food, as we know from Dr. D's research, that are damaging to the gut as well. My intuitive understanding is that eliminating wheat alone (or allergens) would not be fully effective until the gut is not under assult from lectins that are blood type specific. I also think that it makes sense that the gut can heal itself by getting the proper things it needs from diet (including blood type specific probiotics). The gut replaces itself quite often. The key for celiacs in healing, I believe, can be expedited by a blood type specific diet.

Looking to interview Dr. D at some point to discuss these ideas and others in depth.

Hope this helps.  

p.s. In talking with Dr. Fasano, there is a lot of misinformation abounding on the internet about celiac and gluten sensitivity. Be diligent and skeptical in your research.

Wow Angela..

I don't think I have caeliacs, even though I could fit some of the symptoms, from the fact that when I've eaten a lot of wheat in the past, I've podged up a bit-even though my body still felt hungry-obviously it was taking some calories from the gluten. I seem to be (since starting the diet) highly, highly lactose intolerant, however. So viligantly staying away from all diary (except ghee)- even products containing, 'possible traces of milk,' might be the key to feeling well for me.

I hope that this is the answer for you TJ. Fingers crossed. It is a really hard thing living with fatigue, to cope in yourself-then the added stress of the 'helpful' advice everyone wants to give you!! (No sleep hygeine will NOT stop me feeling tired all day and wired at night Grrrr)    No-one seems to understand my approach of focusing all my energy on finding the cure to my fatigue, instead of managing symptoms. I don't know if you find the same??      

Quoted from AKArtlover

The alternative is to live "as if" one has celiac avoiding all gluten.

That's what I'm going to go for.  Although I take a piece of gluten-containing bread every Sunday, I don't know if that would be enough for the test.  But the biopsy would show the damage, if I was in a position to get that done.

Quoted from AKArtlover

There are other lectins in food, as we know from Dr. D's research, that are damaging to the gut as well. My intuitive understanding is that eliminating wheat alone (or allergens) would not be fully effective until the gut is not under assult from lectins that are blood type specific.

I've been following Dr. D's diets since August of 2007.

Quoted from 7966

No-one seems to understand my approach of focusing all my energy on finding the cure to my fatigue, instead of managing symptoms. I don't know if you find the same??

Mom seems to understand.  Most people don't.  Our culture is all about quick fixes instead of real healing.

Dr D has done a lot of research concerning the damages done by the WGA
wheat germ agglutinin found in wheat.....
http://www.dadamo.com/science_bloodgroups_digestion_references.htm

you might want to search for it as
WGA
http://www.dadamo.com/science_lectin_abstracts.htm
http://www.dadamo.com/forum/convert3/config.pl?read=170
http://www.dadamo.com/science_lectins_mitogens.htm

and it goes on and on.....
enjoy!

Quoted from TJ

That's what I'm going to go for.  Although I take a piece of gluten-containing bread every Sunday, I don't know if that would be enough for the test.  But the biopsy would show the damage, if I was in a position to get that done.

Yeah, I don't know that they will go to biopsy unless you have a positive blood test. I have no clue how much biopsy is or if insurance would cover it. Pretty invasive idea, but the best they can do now.

I'm not sure what denomination or religion you are, but my pastor has said it is ok if I take gluten-free communion wafers that I make myself. I ground up some gluten free oats in a Magic Bullet and made a dough with just that and water and cut them into circles. I put them into the toaster oven at a low temperature till they dried out.

Oats were a possibility of a making a flat type bread in Bible times. There is a Jewish company that puts out gluten-free (oat) matzah (forgive me if spelled wrong) around Passover.

There is also some type of organization that makes wafers that does the lowest level wheat allowable by the Catholic church.

Forgive me I don't have the links. Maybe google gluten free communion wafers?

Tess, what you are doing in your journey is what most of the people on the board are doing-- they want real health that is lasting. I commend you.

Many blessings.


And thanks Lola for the references.  

We usually just use plain old sliced bread torn into small pieces.  Technically, we can use any kind of food we wish, so I might just bring a slice of dried banana!

TJ, for a few months I would bring rice bread to church.  Now I just skip the bread & take the water... bishop said that was fine.  But I don't know if you're that sensitive to wheat.  That one little piece will have me feeling awful for the next 5 or 6 hours.

When I switched to spelt (when I was diagnosed with a wheat allergy 13 years ago), I convinced the church lady who made our communion bread to use spelt instead.  I supplied her with the flour and she was willing to use it.  I almost burst out laughing that first Sunday when the pastor pulled the white cloth off the flat bread and looked down at it.  He stared hard it and picked it up.  He kind of tilted his head to one side and then started breaking it into bits as if he wasn't sure how hard it would be to tear.  He looked a little fierce (but then, he was a fierce person--I'm so glad to be out of there).  My mom and I nearly cracked up.

In a way, I wish I DID have an acute, violent reaction to everything I shouldn't eat.  It would be so much easier to spot!  But I can eat wheat without noticing any obvious or immediate consequences.  That is why I had ruled out Celiac.  I don't KNOW that I have it, but I'm considering it a definite possibility, and I am going to act like I do and see what happens.

Quoted from AKArtlover

I ground up some gluten free oats in a Magic Bullet and made a dough with just that and water and cut them into circles. I put them into the toaster oven at a low temperature till they dried out.

I do the same but I cook the balls of "dough" in a circular waffle maker...It squashes them & works a treat & so fast.. They come out looking like those expensive gourmet wafer/crackers...

Quoted from TJ

In a way, I wish I DID have an acute, violent reaction to everything I shouldn't eat.  It would be so much easier to spot!  But I can eat wheat without noticing any obvious or immediate consequences.  That is why I had ruled out Celiac.  I don't KNOW that I have it, but I'm considering it a definite possibility, and I am going to act like I do and see what happens.

I think what convinced me that gluten was an issue was for awhile before I got my stool test, I avoided wheat for a few days, continued to eat what was left of  my normal diet which wasn't blood type anything. Then I reintroduced some wheat. My energy would go down awhile after eating. I would wake up the next day with what I would call a wheat hangover. More brain fog, stinky mood, rumbles in the intestines.

I got a similar but less severe effect from processed sugar after giving that up a several years before (most obvious sources in a conscious way) depending on the quantity. I remember the last birthday cake I ate where my husband and I thought-- why not, let's have some? The desire link was totally broken by our body's responses. I think our family has finally accepted 3 or 4 years later when we politely decline.

In regards to communion, my daughter was on a gluten free, dairy free diet 14 years ago. We went to the following site after my pastor said it was okay to have her use the non-wheat host. Now my church is offering gluten-free hosts for those who need it! Things have really changed for the better.

http://www.ener-g.com/store/detail.aspx?section=15&cat=15&id=21

Quoted from Ribbit

When I switched to spelt (when I was diagnosed with a wheat allergy 13 years ago), I convinced the church lady who made our communion bread to use spelt instead.  I supplied her with the flour and she was willing to use it.  I almost burst out laughing that first Sunday when the pastor pulled the white cloth off the flat bread and looked down at it.  He stared hard it and picked it up.  He kind of tilted his head to one side and then started breaking it into bits as if he wasn't sure how hard it would be to tear.  He looked a little fierce (but then, he was a fierce person--I'm so glad to be out of there).  My mom and I nearly cracked up.

I am laughing at this (pastor's reaction) so hard I am crying.  Fantastic story to share and a great one to end my day!

Don't know how helpful this may be for anyone else, but I always take some Deflect a few minutes before the communion tray of unleavened bread is passed among the congregation...and then I only take the very smallest portion imaginable since we individually break off a small amount ourselves i.e. The communion bread is not pre-apportioned into "wafers". Taking the Deflect right before that tiniest piece of communion bread seems to help a lot.

I once took the bread at sacrament, but had a hard time sitting through the rest of church if I did.  Now I can bring my own bread and they'll bless and pass it to me, or I just have some in my bag.  Without two celiac kids I would just skip the bread, but they need something.  All of the above solutions are fine with my bishop.  

If that's all the gluten you're eating, then the standard blood tests will probably be negative, except for antigliadin IgG...you have to be off gluten a good long time for that one to switch back to negative, it has a long memory.  

My brother and niece both had negative blood tests (except for anti-gliadin IgG, which most doctors don't care about), but fought for biopsies anyway and got positive biopsies.  My sister and nephew weren't so lucky or convincing, even though they had endoscopies done, the doctors didn't biopsy for celiac because the standard blood tests were negative (they were in there anyway, would have been so easy just to check).  Most of the standard tests are IgA-based, but celiac disease can cause IgA deficiency, and those with IgA deficiency are more likely to have celiac, so that throws it all out the window unless there's a lab and doctor that does the IgG versions of everything as well.  My osteopathic doctor is one of the few who care about the antigliadin IgG, but he doesn't usually order biopsies, so I am not biopsy proven  (I wish I'd gotten the biopsy when I first brought it up with my doctor, he just said, if wheat makes you sick don't eat it, so I didn't go gluten free for five more years, I didn't think I was celiac and wasn't serious about eliminating all gluten).  My oldest son would be much healthier and have much better teeth if I'd gone gluten free initially.  I felt fine with some gluten, wheat is the thing that makes me very sick, other gluten just upsets my stomach a bit, but it was still doing damage. It's only very recently that all my other food allergies and intolerances and weird reactions have calmed down, it's taken that long to heal the leaky gut and other problems gluten caused.

With my kids, I haven't waited for positive tests, they both had the gene tests and one had the stool test, but I couldn't stand watching them get sicker and sicker while I fought for the tests, only to have the tests possibly be negative because the damage wasn't extensive enough, yet.

For those who were following this thread but not a couple others I've been on, I did take a small piece of sacrament bread again this Sunday.  I felt fine Sunday, despite only having about 3-4 hours of sleep the previous night, BUT Monday I felt totally wrecked, like fibromyalgia + hangover.  SO, it wasn't an acute reaction, but it was an obvious one, once other confounding sensitivities were not in play, and one I'd had gluten out of my system for a while.  I'm just amazed that such a tiny bit could affect me like that!!

yep...yup... toll .. the word a w a r e n e s s ....goes' for it but please onto dif. levels... it's really important...
hey... it might be also that it was an acute reaction of mental discussions to the body... called psychosomatic reaction... we can't say no... but we can't say yes..either.. so what!!  Btw...remember Dr. D always mentioned that those issues might effect us 500 times harder than imagined...after havin been compliant...  and if somebody really reacts on gluten& gliadin, so all but really all grains should be eleminated which are containing any kind of that stuff!... nothing else is practicable... but yep up to you to proceed ....

I never cheat with gluten.  That tiny infinitesimal amount can do damage that takes up to two years to repair or cause scarring that lasts forever.  I've even known people who have had to go on steroids because they "cheated" one too many times.  BAD GLUTEN, BAD!

I think I had gluten somewhere in the last few days.. my left eye is swollen, my stomach is a mess, I am cloudy and not right.

I did not document everything this week, but I was blaming the bison for not feeling ok, b/c I had too much protein in a previous thread.. however, I just realized I did injest some tuna with a sauce on it from a restaurant on Sunday and I did not ask about the gluten.. does teriyaki have gluten???

I also waitress at a diner with tons of gluten products and I wonder if some gluten got into one of the salads I ordered..

How does black pepper mess up our system? The bison burger I got from whole foods had pepper on it and cajun spices.. interesting, I wonder if this was the problem and not the meat itself.

question: how long does it take to get the wheat out of our systems? I am still not feeling well.

I leave off the sauces that restaurants use to often they are thickened with flour. (gluten)

Quoted from marjorie

question: how long does it take to get the wheat out of our systems? I am still not feeling well.

That will depend on your body. Sorry not much help I know.

You can look up any food tested by clicking on the "learn more" very top, on right. Then click "Food value look up" you will find a list of foods, find the food your interested in and click on it. There is much information  for you. I would also get the ER4YT encyclopedia it is great and packed with information

and above all, don t underestimate the power of deflect!!!

black pepper, if preground is full of mold

"Glutened" again last night!

By a STEAK, no less.  You'd think a piece of fresh meat would be safe, but you might be wrong.  I ate half of this steak last night with some broccoli and quinoa, and 20 minutes later I had a headache and my stomach was complaining about what I'd just put in it.

At least I recognized what was happening quickly.  I knew it wasn't the broccoli or the quinoa, so I dug the steak package out of the trash can (ew ) and it was MARINATED.  It had an INGREDIENTS LIST!  Ridiculous.  The front of the package said nothing about marinade.  One of the ingredients was "natural flavoring", which I assumed was the culprit.  So I guzzled down about a pint of water and threw up everything I could get out.  Then I took some clay with a bromelain, digestive enzyme, and some ibuprophen for the headache.  Still had a headache when I woke up, my knees and ankles ached, and my eyes were red and puffy like I'd stayed up crying all night.

I am just blown away at how much more sensitive I've gotten lately.  I guess now that my gut is really starting to heal, it's complaining a lot more loudly whenever I hinder its progress.

The gluten damage could be quick to heal if I do not have dairy together, Gluten plus dairy is a hell; I feel as I had taken opiates for hour or a day and cold, sinusitis or otitis. Now I can implement damage control with Deflect, pineapple and cranberry ( I as a teacher use also corn) for their mannose content. Pineapple has mannose and bromeline very useful this combination. Best wishes !

Interesting, I feel the same way.. I was trying goat cheese, but had to give that up--- my body just cant handle ANY dairy.

It is what it is

Quoted from Maria Giovanna

The gluten damage could be quick to heal if I do not have dairy together, Gluten plus dairy is a hell; I feel as I had taken opiates for hour or a day and cold, sinusitis or otitis. Now I can implement damage control with Deflect, pineapple and cranberry ( I as a teacher use also corn) for their mannose content. Pineapple has mannose and bromeline very useful this combination. Best wishes !

I have been taking bromelain regularly.  Pineapple though has a lot of sugar in it, which I'm limiting right now, seeing how fructose also seems to be a hitch for me.  I don't think now that dairy is a problem, but I'm going to play it safe and stay away from it until I can test it and know for sure that, if I get sick, it's the dairy that's causing it.  Victoria said she doesn't do well on dairy.  It would be a shame to have another dairy-intolerant Nomad here!

teriyaki, sorry, it probably has wheat....made from soy sauce....(soy which is not wh. free...

Quoted from TJ

...so I dug the steak package out of the trash can (ew ) and it was MARINATED.  It had an INGREDIENTS LIST!  Ridiculous.  The front of the package said nothing about marinade.

I am just blown away at how much more sensitive I've gotten lately.  I guess now that my gut is really starting to heal, it's complaining a lot more loudly whenever I hinder its progress.

You've really got to watch those grocery people all the time...  They try to sneak stuff in anywhere they can.

New skin and raw nerves are much more sensitive than old...  It is just the way life is...  Think about how good you will feel when you get healed...  I know, I'm still working on it, too...

Quoted from ABJoe

New skin and raw nerves are much more sensitive than old...  It is just the way life is...  Think about how good you will feel when you get healed...  I know, I'm still working on it, too...

So true.  I guess these over-the-top reactions are a good sign the healing is already in progress, and that maladaptation is going away.

TJ - Don't forget how good quercetin is!!!??? Magic stuff!!

Quoted from 10111

I never cheat with gluten.  That tiny infinitesimal amount can do damage that takes up to two years to repair or cause scarring that lasts forever.  I've even known people who have had to go on steroids because they "cheated" one too many times.  BAD GLUTEN, BAD!

Also: Bad avoids, Bad!!! Definitely the more you heal, the more quickly & worse these things affect you!!! Makes perfect sense though... I cannot believe the miniscual amount it takes though...& how long it takes to get over the effect

Guys I had another odd reaction this afternoon that has me rethinking the cause of the Tuesday night/Wednesday reaction.  After work today, I received my sample package of Konsyl gluten-free psyllium fiber in the mail.  I mixed up one package in a bottle of water with a pinch of pink sea salt and a bit of bottled lemon juice, then I lay down for a short nap about 3 pm (eastern).  Again, within 20-30 minutes I had a headache and felt generally unwell (still feeling it and the headache now).  It's about 5:15 pm now.

I'm still sure it was something in the steak (the marinade) on Tuesday that caused the problem, but I doubt now that it was gluten.  The reaction from eating gluten happened Monday, and I ate the gluten Sunday morning.  These two later reactions happened much faster.  I actually felt pretty good most of Sunday!

So maybe it was citrus??   Any other ideas?

FYI, here is the ingredient list for the bottled lemon juice:

lemon juice from concentrate, sodium bisulphite, sodium benzoate, lemon oil

Reading about the two sodium preservatives was enlightening.  Both are potential allergens.  Sodium bisulphite was banned from application to fresh produce in the 80s in the USA because of several deaths.

I think I have eliminated citrus as the culprit!

TJ When I first read this latest reaction, I was gonna put my money on the preservatives in the lemon juice!! Then I saw you had reached that conclusion... Gotta be sooo careful eh being a nonnie!!??

Quoted from Possum

Gotta be sooo careful eh being a nonnie!!??

Good grief YES!!!

I also recalled that I didn't have such a reaction with grapefruit.  Those preservatives can really mess with your brain!  But just to make sure, after I had that insight I juiced a fresh lime I had in my fridge and drank down the juice, and I didn't have a reaction to that, so citrus is NOT (thankfully) the problem!

Buy lemons (organic if possible) and squeeze them yourself.

Drinking lemon water in the mornings, the wonderful experience of smelling the freshly cut lemon makes the unpleasant business of waking up (fully) more enjoyable.

Waking up in the morning is only unpleasant if I ate something I shouldn't have, or went to bed too late!  But that still sounds nice...

Here are the other ingredients in the steak I ate Tuesday night:
"Up to 12% of a solution containing water, seasoning (sea salt, evaporated cane juice, sodium carbonate, natural flavoring, sodium acetate, salt, sodium diacetate)."

Maybe it was free glutamate in the natural flavoring.

it does do me!!!

Quoted from TJ

Here are the other ingredients in the steak I ate Tuesday night:
"Up to 12% of a solution containing water, seasoning (sea salt, evaporated cane juice, sodium carbonate, natural flavoring, sodium acetate, salt sodium diacetate)." very fancy name for sugar - could this have been a problem?

Maybe it was free glutamate in the natural flavoring.

Well at least they didn't charge you extra??!! Awful lot of different salt in there??!!

Should have been a comma between "salt" and "sodium diacetate".

But yes, there sure is a lot of sodium.  No wonder it tasted so good!  From past experience, I'm 100% sure that such a small amount of sugar wouldn't be troublesome.

Today I brought dried banana chips for the sacrament (two of them, one for another member who has Celiac).  BUT they put it in the same tray as the bread.  I figured it would be fine.  I ate it.  Again, 15-20 minutes later I started getting a bit of a one-sided headache, and I got really sleepy.  Seriously?  Is this psychosomatic or could I really be THAT sensitive?

you never know what is added to dehydrated or chips of any kind, no matter how natural they say they are!
I trust no one but my home made production of anything....
cut up a rice cake,  next time

I think you are right on the money Lola.

I never thought about glutamate (as in, MSG) being related to gluten (as in, wheat).   If Rob was here I'd ask him the difference/similarities in chemical structure.....I could just call him, couldn't I?

....Hmm, hmm, dialing...hmmmmmm....

Okay:

Gluten is just a sticky protein.

Glutamate is glutamic acid, which is amino acid.

He said he can't see any link between the two, though he admittedly doesn't know the etymology (oh, funny.  I would have spelled it etimology, but I'm informed by trusty Spellcheck that I'm wrong) of the words.  He said there's no reason he can see from a chemical standpoint to have a gluten-like reaction to MSG.

lola-

does it matter if the rice cake is the puffed ones or should it be the lundberg kind?

those have more fiber.....made of whole brown rice and not as void as the plain ones....
or look around for the best option

msg is a black dot in my swami

on the other hand, wheat is a real toxin, even sprouted wheat

Quoted from Ribbit

He said there's no reason he can see from a chemical standpoint to have a gluten-like reaction to MSG.

No, I wouldn't think there would be.  Glutamate is quite a simple compound compared to gluten.  I think it was just another kind of reaction.  I'd have to find out just what is in that "natural flavoring" to know!

Free glutamate is an excitatory neurotransmitter, so it could explain the headache...

Have you had a blood test or biopsy for Celiac disease that came out negative?
You may still have gluten intolerance!

Those tests are looking specifically for Celiac disease. So they miss other
types of gluten sensitivity.
Intolerance to gluten (from wheat and other grains) is common - some
specialists estimate up to 15% of all people are affected. The much
rarer Celiac Disease only affects ~0.3%.
However most doctors testing for gluten intolerance still use a blood
test (developed in the 1950s) designed to pick up Celiac disease. . .
and of course it misses all those other Gluten-sensitive people who
are Non-Celiac Gluten Sensitive (NCGS).

I've never been tested for Celiac.  It's good enough for me to know what I've learned from experience.  I would like to investigate NCGS though.  I'd like to know how it's different from Celiac disease.  I suspect it is the same thing, but they call it NCGS when the tests come out negative!

My ND suggested that I may have Celiac but I do not have any symptoms other than wheat and yeast sensitivity. She believes my chronic sinus/allergy/asthma could be caused by this. I have been wheat and yeast free for almost 3 months now and STILL have the same symptoms, so I believe its environmental. I can say, however, it may have lessened the severity of the mucous and coughing. Maybe I am in that NCGS group.

I noticed a difference between "a little gluten" and "no gluten".  Maybe you have something else going on in conjunction.

When I first came off wheat and felt sooo much better,  I had a lovely vegetable soup but also made on barley.  My reaction was so bad it sent me to bed for a few days....have eaten like  a Celiac ever since.  

It is very hard with this lifestyle but your health is worth it