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angelighte
Tuesday, May 13, 2008, 3:47am Report to Moderator Report to Moderator

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Hi to all Celiacs + gluten intolerant (wheat intolerant) sufferers,

I just want to find out the difference in symptoms you have.

Those of you with Celiacs Disease - what happens if you eat gluten? Do you throw up etc. What if you just eat a tiny bit of gluten?

Those of you with Gluten intolerance is it that you feel uncomfortable in the gut over the next few days? or do you throw up straight away as well?



Eat your heart out


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Lola
Tuesday, May 13, 2008, 4:03am Report to Moderator Report to Moderator

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which are your symptoms?


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angelighte
Tuesday, May 13, 2008, 4:06am Report to Moderator Report to Moderator

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My symptoms are that I start feeling uncomfortable in my stomach about an hour or so later and for a few days. Lethargic. A bit epressed. Unmotivated.


Eat your heart out


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Melissa_J
Tuesday, May 13, 2008, 5:41am Report to Moderator Report to Moderator

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I'm not a confirmed celiac, but know that gluten does enough damage that I don't need to know more.  My brother and niece are biopsy confirmed. My oldest son is stool tested, and my youngest has never had enough gluten to do lab-detectable damage...but reacts very badly too it.

I've never thrown up from it.  The first symptoms I noticed were lethargy and joint pain.  Large amounts of wheat will make me instantly depressed, and cause anxiety attacks, etc. for 24 hours or so.  Small (i.e. tiny) amounts of gluten will cause gas, bloating and diarrhea, as well as joint pain, moodiness, and lethargy.  Repeated tiny exposures will cause an itchy rash, or itchy elbows and knees.  I've also had vitamin D deficiencies and osteopenia (at 31).

My oldest son would throw up at random, at odd times when he wasn't even sick.  But he mostly had recurrent diarrhea, stomach pain, and terrible mood changes.  He also had dental enamel defects and anemia.  


Type O+ blogger, secretor afterall. Gluten intolerant. With two gluten intolerant sons:  A+ Secretor 10 yo (also fructose intolerant and slightly egg allergic), and  O- 7yo.
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Eric
Tuesday, May 13, 2008, 5:58am Report to Moderator Report to Moderator

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Quoted Text
my youngest has never had enough gluten to do lab-detectable damage



Does that mean that if you don't eat gluten, the lab test is worthless?   I was tested for Celiac a year ago, and it came up negative.. but I wasn't eating any avoids.  So if I had been eating wheat, I might have tested positive for Celiac?   All I know is that I have the same kinds of reactions from wheat.. I get depressed, irritable, and I have a lot of gas, etc


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Rebecca_C
Tuesday, May 13, 2008, 5:59am Report to Moderator Report to Moderator

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Hi Marie,

Welcome to another Perthite!!  We're in WA too!!!

Ok, well from what I understand (as a celiac), gluten intolerance is pretty much the same as being a celiac.  Being wheat intolerant is a bit different.

My symptoms pretty much start as soon as it hits my stomache - nausea, bubbling, bloating - then get worse.  My blood pressure drops (due to the nausea) and I tend to need to be near facilities for a while (diarrhea).  Then you feel fatigued for about a week after exposure.  Before I eliminated gluten, I felt dreadful and my stomache would never settle.  Having been gluten free for a number of years now, it hits me if I get any.

Maybe try going gluten free for a while.


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angelighte
Tuesday, May 13, 2008, 6:07am Report to Moderator Report to Moderator

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Yes I'm going to try a lot harder now.

I gave in today already to a little wheat and I feel so tired and irritable.

Yay for being in Perth Are there more of us?


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Rebecca_C
Tuesday, May 13, 2008, 6:20am Report to Moderator Report to Moderator

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Monstar's from Perth as well.

Must admit, I'll always be a Brisbane girl at heart, but Perth is fantastic.  There are some pretty good restaurants and they're all really well versed in gluten and allergens.

Unfortunately most of the gluten free products in Australia have potato or  maize in them (aka corn) so generally you have to make things yourself.  

There are some good healthfood stores over here that seem to have more gluten-free grains in them (like quinoa, amaranth, etc).  I can remember when I was first diagnosed that rice was pretty much the only option.


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angelighte
Tuesday, May 13, 2008, 6:46am Report to Moderator Report to Moderator

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I hardly buy special gluten free foods cos they have all that other stuff in them - I try to stick with plain rice.

I used to live in Brisbane too a few years back - I totally understand, I loved it there.

Ill have to meet Monstar thanks


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Melissa_J
Tuesday, May 13, 2008, 7:10am Report to Moderator Report to Moderator

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Quoted from Eric



Does that mean that if you don't eat gluten, the lab test is worthless?   I was tested for Celiac a year ago, and it came up negative.. but I wasn't eating any avoids.  So if I had been eating wheat, I might have tested positive for Celiac?   All I know is that I have the same kinds of reactions from wheat.. I get depressed, irritable, and I have a lot of gas, etc


Yes, but if you were eating any gluten grains that aren't avoids, then that might be enough.  Sometimes, in children, they have to be sick for quite a while before the lab tests show anything, and some people have negative lab tests, but positive biopsy (my brother and niece both had that), then others will have no detectable damage on a lab test, but still feel a world better without gluten.  The tests can prove that you have it, but they can't prove that you don't have it, IMO.  I was on BTD, but had slipped up a couple times in the month before the blood test, and all that was positive on me was the antigliadin IgG (which most doctors dismiss).

I also have a mild wheat allergy, so wheat does worse to me than rye and barley.  GF Oats don't seem to do well for me either...I may try them one more time in the future, but I don't think they'll ever be a regular part of my diet.

Anyway, if you consider gluten sensitivity to be potentially as serious as celiac disease (just a different degree of damage), as I do, then the tests aren't all that relevant.  No doctor can tell me I should be eating gluten, because my body tells me otherwise.  I still recommend the tests for those who are curious, or may fall back on their old eating ways without some reinforcement, but even with negative tests, I recommend trying GF for a good long time.

It took my sister 6 months of GF eating to see improvements in Fibromyalgia, CFS, and headaches, but now she's got most of her health pieces put back together.  She still has fibromyalgia, but she has her life back too.  I guess you could say we're a poster family for the range of gluten sensitivities.


Type O+ blogger, secretor afterall. Gluten intolerant. With two gluten intolerant sons:  A+ Secretor 10 yo (also fructose intolerant and slightly egg allergic), and  O- 7yo.
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Curious
Tuesday, May 13, 2008, 7:26am Report to Moderator Report to Moderator

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This is an interesting link on gluten-allergies: http://www.allergyglutenshow.com.au/allergytube_coeliac.php
There is an allergy show in Brisbane this weekend. I'll go to see whether I can learn something new.
My symptoms are feeling exhausted, bloated and irritable when I eat gluten. I have not been tested, but don't eat it anymore.
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Maria Giovanna
Tuesday, May 13, 2008, 7:40am Report to Moderator Report to Moderator

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Hi Marie and all celiacs,
could you figure to be celiac in Italy the country of pasta, bread and pizza ! I am  and I had real symptoms only till 2 years old or three.
My bones and my eye allergy as my colds and sinusitis were deeply linked to wheat gluten and cow milk, as also a little bit of dermatitis. I was already 40 years old when I was checked with jeiunumscopy. Another symtpom I had was a very very slow digestion and I hated to work , study or go out after a big wheat meal !
Maria Giovanna


INTJ Italy celiac��
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Ron-A-Non
Tuesday, May 13, 2008, 8:37am Report to Moderator Report to Moderator
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When I eat wheat, I feel mentally stunned, my entire abdomen swells and hurts a lot, and I start itching all over like mad.
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angelighte
Tuesday, May 13, 2008, 8:49am Report to Moderator Report to Moderator

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Quoted from 521
When I eat wheat, I feel mentally stunned, my entire abdomen swells and hurts a lot, and I start itching all over like mad.


Im going to keep more of a tab on it now.

Ron you sound like you have a wheat Allergy which again is different from Gluten intolerance.

Anyway - thanks everyone for sharing


Eat your heart out


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blade002
Tuesday, May 13, 2008, 12:45pm Report to Moderator Report to Moderator
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My Brother was talking about Celiacs only about 1 week ago and if memory serves me he said he has it.  I have heard it can run in the family genetically, and even thought i have tried EVERY thing in the book to feel better, i have found that virtually NOTHING has worked!... Helped!.. but not worked.

I have taken up Swimming for the last 5 years, went onto an Alkaline Diet and gave up Dairy and Meat 2 years ago, have eaten Organic for at least the last 3 years, and now i have started on the Eat Right 4 Your Type Diet.  

Throughout all this, i have not been able to figure out why for 2 weeks i will on an absolute mental high and then suddenly for a week i will hit rock bottom in mental and physical lethargy, anxiety..etc.  For my Blood Type though, it say that Spelt bread is ok due to the use of Spelt Flour, but i bought some last week as well as Soba Noodles and have come home every night feeling very week and tired and just fall asleep.. but when i avoid such things i have more clarity and far less tiredness..

So i think its time i went for the test, although the cost of getting it done concerns me because i am already financially under the pump.

BTW - They say you need to eat Gluten based foods before your Celiacs test, but how long before???.. a week, 2 weeks ????.. I don't want to eat it for too long, i might end up hanging myself on it!.. lol..

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Maria Giovanna
Tuesday, May 13, 2008, 2:49pm Report to Moderator Report to Moderator

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Hi Blade002,
the golden standard of colonscopy or jeiunumscopy  to diagnose celiac disease is six month of free diet with gluten. You need to eat wheat, spelt, rye , barley, kamut items for this purpose. For blood tests antigens are more quick to be sensitive to diet but let it eat with gluten for a month , to be sure your  tests are trustwort.
If your symptom are already cristal-clear depending on gluten for you, I'd only do BTD or GTD gluten free and test my white lines on  my finger printing, as Dr D. wrote in genotype book. Nearly 1 % of us is celiac or gluten intolerant and  others are wheat intolerant.
For ease your symptpms as an A I find perfect corn products ( Mannose  as in cranberries) and fresh pineapple, that break  the wheat proteins in simple aminoacids, helping the digestion and miminizing the damage.
Deflect A was  also perfect , as N Acetylglucosamine, but at  the moment corn and pineapple together too work for me.
Maria Giovanna


INTJ Italy celiac��
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TJ
Tuesday, May 13, 2008, 10:57pm Report to Moderator Report to Moderator

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I have a teeny piece of wheat bread every Sunday at church, and it doesn't seem to bother me.  I am gluten intolerant, but it took some time, and experimenting with GTD, to figure it out.  When I started BTD, I went over to spelt bread and ezekiel bread, both of which were compliant but also contained gluten.  I backed way off on bread consumption during my GTD trial, and began noticing soon after that when I ate bread, my stomach felt "weird".  Not really cramped or upset, but almost.  I had hit a plateau in my improvement, and eliminating gluten helped me get past it.
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Tea Rose
Tuesday, May 13, 2008, 11:21pm Report to Moderator Report to Moderator

Kyosha Nim
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Quoted from 521
When I eat wheat, I feel mentally stunned, my entire abdomen swells and hurts a lot, and I start itching all over like mad.


Like Ron, the Icebears' symptoms, these sound alot like what I experience.  I have immediate bloating in the abdomen, my body immediately starts retaining all water to dilute the effects of wheat/gluten.  I usually have to resort to taking a homeopathic remedy to get rid of the water retention.

I get brain fog and irritable (just ask my husband  )  I have come to realize that it actually changes my personality - I am a more loving, even-tempered person since I have stopped eating gluten.  I feel like I have found the "real" me!

I have always had unexplained rashes, hives, red splotches and itchiness that has also subsided greatly - not quite all gone yet, but I haven't reached the 6 month mark yet so I am confident this will clear up too!

Tea Rose



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blade002
Friday, May 16, 2008, 2:54pm Report to Moderator Report to Moderator
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Quoted from Maria Giovanna
Hi Blade002,
the golden standard of colonscopy or jeiunumscopy  to diagnose celiac disease is six month of free diet with gluten. You need to eat wheat, spelt, rye , barley, kamut items for this purpose. For blood tests antigens are more quick to be sensitive to diet but let it eat with gluten for a month , to be sure your  tests are trustwort.
If your symptom are already cristal-clear depending on gluten for you, I'd only do BTD or GTD gluten free and test my white lines on  my finger printing, as Dr D. wrote in genotype book. Nearly 1 % of us is celiac or gluten intolerant and  others are wheat intolerant.
For ease your symptpms as an A I find perfect corn products ( Mannose  as in cranberries) and fresh pineapple, that break  the wheat proteins in simple aminoacids, helping the digestion and miminizing the damage.
Deflect A was  also perfect , as N Acetylglucosamine, but at  the moment corn and pineapple together too work for me.
Maria Giovanna


Thank You Maria and i do sincerely apologise for not getting back to your post sooner. Your wealth of information is definately appreciated.  In reference though to eating a gluten based diet for 6 months, well its not something i think i could do, given the fact that eating such foods just makes way too lethargic to operate properly and with everything i am trying to accomplish right now, it would not be in my best interest until things get quiet on my end.

But your other options for a lower level form of testing might be the best option for me, so i might go for those.  Thank You again Maria
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Stefina
Friday, May 16, 2008, 11:39pm Report to Moderator Report to Moderator

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Quoted from Maria Giovanna
Hi Marie and all celiacs,
could you figure to be celiac in Italy the country of pasta, bread and pizza ! I am  and I had real symptoms only till 2 years old or three.
My bones and my eye allergy as my colds and sinusitis were deeply linked to wheat gluten and cow milk, as also a little bit of dermatitis. I was already 40 years old when I was checked with jeiunumscopy. Another symtpom I had was a very very slow digestion and I hated to work , study or go out after a big wheat meal !
Maria Giovanna




this reminds me of my sister in law who is of Italian heritage. She is blood type B and eats lots of tomato sauce.  She has ulcerative colitis too and her sister also has problems.  They won't believe me when I tell them it's probably tomatoes.  No one wants to hear that because the sauce is so good.  
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Stefina
Friday, May 16, 2008, 11:43pm Report to Moderator Report to Moderator

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Quoted from angelighte
Hi to all Celiacs + gluten intolerant (wheat intolerant) sufferers,

I just want to find out the difference in symptoms you have.

Those of you with Celiacs Disease - what happens if you eat gluten? Do you throw up etc. What if you just eat a tiny bit of gluten?

Those of you with Gluten intolerance is it that you feel uncomfortable in the gut over the next few days? or do you throw up straight away as well?





When I eat wheat products I feel tired, lethargic, immediate weight gain this leads to Chronic Fatigue Syndrome which is common in Bs.  I also have mood swings.  I look back at my teenage years (pizza, crackers, cookies, cake) and my poor parents had to put up with me.
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Melissa_J
Saturday, May 17, 2008, 12:31am Report to Moderator Report to Moderator

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Maria is right about the cranberry and pineapple juice, they really do help!  I always keep some pure cranberry juice on hand and drink it up whenever I eat out...  

Drive55 - if you still eat the bread on Sundays, you may want to drink some before and/or after.  If you do find the bread bothers you, your bishop can accomodate a substitution quite easily.

Regarding itchiness, gluten mainly makes my elbows and knees itch (with DH lesions that show up just as dry scaley patches).  My food allergies make me itch all over, usually starting at my wrists, but leave no spots/lesions.


Type O+ blogger, secretor afterall. Gluten intolerant. With two gluten intolerant sons:  A+ Secretor 10 yo (also fructose intolerant and slightly egg allergic), and  O- 7yo.
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TJ
Saturday, May 17, 2008, 3:53pm Report to Moderator Report to Moderator

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Melissa, I don't think it's causing a problem for me.  Maybe down the road I'll think differently, but for now, I'm fine with it.  It's only once per week, and it's only a little pinch of bread.
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Ribbit
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A little pinch of bread used to be enough to send my gluten-intolerant husband into fits.  "Fits" meaning depression, "the runs", and grumpiness that would send the rest of us out of the house for a while.  Since being on the BTD for a while a pinch once a week doesn't bother him.  My husband's main symptom was depression.  That's what wheat used to do to me too.  Terrible depression.  We call it the "wheat cloud."


ISTJ, BTD since 5/05.  Battling chronic Lyme disease since ~1985.

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Maldo
Tuesday, May 20, 2008, 7:04am Report to Moderator Report to Moderator

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Quoted from angelighte
My symptoms are that I start feeling uncomfortable in my stomach about an hour or so later and for a few days. Lethargic. A bit epressed. Unmotivated.


I have pretty much the same as this too.  Plus I feel cold, whatever the weather.  If I dont have wheat it doesnt matter if its snowing, I dont feel cold


"You're not disabled by the disabilities you have, you are able by the abilities you have." - Oscar Pistorius
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