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Gluten Challenge - Where Are The Symptoms?

hasan

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hasan Newbie
hasan
Posted

Hey everyone,

 

I was 21, had an increasing diarrhoea problem for months docs could not find why? Then a gastroenterology specialist asked for celiac disease blood tests. Whoops, came positive on anti-gliadin IgA and IgG as well as anti-endomissium IgA and IgG. Had to get a biopsy somewhere else by a general surgeon and that came negative. But the previous doc told me that could happen, to go gluten-free anyway as I showed positive on 4 bloodtests. After I went off gluten the months-old diarrhoea problem eased up and disappeared in a couple weeks.

 

Now I am 24 and obliged to join the army (Turkish, btw). Army docs want me to get sick to get me off duty. So I have been on gluten again for 10 days. 

 

I havent had any problems yet, and have been eating like crazy. Read that some people here suffered enormously even after one meal. I do have a strong body, even the worst cases of diarrhoea days, I had no other visible problems and all my other stuff looked/looks fine. 

 

Now I am curious of all this, if I have it or not at all. The blood was all positive and the symptom stopped. But no problem for 10 days, when do the symptoms usually show? what was your experience or do you have any advise on this?

 

wish y'all a healthy life!

 

Hasan

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cyclinglady Grand Master
cyclinglady
Posted

I think Celiac disease symptoms can wax and wane. Remember, it is an autoimmune response and can time to ramp up. It has only been ten days. A gluten challenge is usually 8 to 12 weeks for the blood test per the University of Chicago, a leading celiac disease research center.

nvsmom Community Regular
nvsmom
Posted

If you had positive tests, then you are a celiac.  Try to get them to understand that.  Making you sick to prove you are sick seems not too smart.  :(

 

I agree that symptoms can wax and wane.  I had good weeks and bad weeks, and even good years and bad years, although the bad became more common as time went by.

 

Remember that symptoms of celiac can be invisible like osteoporosis, fatigue, anemia, ataxia, etc.  And there are some celacs who will develop different symptoms the longer they are on gluten.  Gastrointestinal symptoms are only one type of symptom.  There are over 300 symptoms, as seen here:  Open Original Shared Link

 

Best wishes.

sadvilli Newbie
sadvilli
Posted

The endoscopy is the only  definive diagnosis accepted by the insurance companies

LauraTX Rising Star
LauraTX
Posted

The endoscopy is the only  definive diagnosis accepted by the insurance companies

 

This may vary from company to company, best to each check with their own plan about what is covered and when.

LauraTX Rising Star
LauraTX
Posted

Welcome to the forum, Hasan.

 

Not all Celiacs get outward symptoms when they eat gluten.  It varys per person.  When your doctor told you to go gluten free because the endoscopy biopsy could have missed it, he was correct.  Celiac damage can be patchy, and they need to take a number of samples to ensure they don't miss anything.

hasan Newbie
hasan
Posted
  • Author

Thanks all, love this forum already. 

 

Even if my condition is confirmed, I feel lucky seeing that my body can cope with gluten much better than most patients. Seemingly, of course, in terms of symptoms. I cannot say what it's been doing to my insides. prolly a lot!

 

Been enjoying kebab wraps, baklava and beer like crazy these days, so that's an upside  :)

 

Will keep you posted if I go through something worth mentioning on how I progress.

 

cheers!

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nvsmom Community Regular
nvsmom
Posted

Mmm. Beer.  Enjoy a stout for me.  ;)

ravenwoodglass Mentor
ravenwoodglass
Posted

I do so miss baklava and spanikopita (sp?) do have some for me but don't tell me how good it was. 

I hope you do remain at least mostly symptom free. As was stated if you were diagnosed previously then even symptom free you are still celiac.  If you were fully healed it may take some time to redamage enough to produce noticable symptoms or positive test results. I hope the doctors realize that is the case. 

  • 1 month later...
hasan Newbie
hasan
Posted
  • Author

Hey folks, you were so helpful when I started my gluten challenge, and now I am at another strange point and need your ideas.

 

I ve been on a massive gluten challenge for the 7th week now and no signs of diarrhea that got me into gluten-free diet. As I told you before after diarrhea problem of a few months I showed positive on anti gliadin and endomisium IgA and G. The rather fishy biopsy showed negative but nonetheless I went gluten-free and the symptoms stopped. I have gotten the same blood tests when gluten-free after 2 and 3 years and they came back negative except gliadin IgA which came back positive with and without gluten in my diet.

 

Now after 7 weeks, no problems and I even gained weight after all those carbs. My head is spinning, I ll join the army in 2 weeks and before I am gonna get a blood test (will include anti tissue transglutaminase this time, of course) next week to see what the situation is.

 

What do you make of this, have you heard anyone going symptom-free after 7 weeks of gluten challenge?

 

I am now thinking I was maybe falsely diagnosed, me not getting a biopsy result and all. I have a major IBS as well, maybe it was that the first time. Awareness is gold in this thing, something I lacked when I was first diagnosed.

 

Any help is appreciated.

 

cheers from Turkey!

Hasan

nvsmom Community Regular
nvsmom
Posted

I had periods of months, and even years when I was a child and into my early twenties, where I had very few obvious symptoms to basically none.  Symptoms can wax and wane, and change over time.  The symptoms I got in my thirties were different than my twenties which were different than my childhood.  There can be a lot of variation.

 

Was it the endomysial IgA (EMA IgA) you were positive on?  That test is 98-100% specific to celiac disease.  Only 2% of all positives, at the very most, are caused by something other than celiac disease.  If you combine that with positive AGA tests which show a gliadin (gluten) sensitivity, then it is pretty much a sure thing.

hasan Newbie
hasan
Posted
  • Author

Thank you and that's right Nvsmom, Endomisyial IgA and IgG(Dont know if this is significant too as well as both gliadin, wasnt tested for transglutaminase then) were positive then. Well, it was a pretty top noch hospital that I had the blood tests, and false positive is much more rare then false negative right? Anyway I got a little cheerful thinking that I might not have this burden. But I am continuing my gluten challenge and will be tested next week (week 8). I guess we will see how it is.

 

I am having a big blowout in Istanbul this weekend, before the military service, hope the symptoms dont catch up until then, fingers crossed!! :)

 

best! 

Hasan

dancingmama Newbie
dancingmama
Posted

I'm still waiting to see my gastro..but from what I have read you can have celiac without symptoms. That's why they usually screen high risk groups for it annually (type I diabetes for example). Unfortunately the damage can still be there :( In any case, wishing you the best! Hope you can get a definitive answer one way or another. 

nvsmom Community Regular
nvsmom
Posted

Thank you and that's right Nvsmom, Endomisyial IgA and IgG(Dont know if this is significant too as well as both gliadin, wasnt tested for transglutaminase then) were positive then. Well, it was a pretty top noch hospital that I had the blood tests, and false positive is much more rare then false negative right? Anyway I got a little cheerful thinking that I might not have this burden. But I am continuing my gluten challenge and will be tested next week (week 8). I guess we will see how it is.

 

I am having a big blowout in Istanbul this weekend, before the military service, hope the symptoms dont catch up until then, fingers crossed!! :)

 

best! 

Hasan

 

I like to refer people to this report by the World Gastroenterology Organization, pages 10- 12 it discus the specificity of the tests.  It's a good reference.  Open Original Shared Link

 

Which military are you joining?  Do they take celiacs?  I just ask because up here in Canada, they will not take a celiac into basic training but if you discover you have celiac disease while in, they will (usually) make accommodations for you.  Up here, if you were willing to risk it, the only way to get into the military (as a celiac) would be to join and then get tested later if you can - the military's medical system can make that difficult though. You might want to make sure of their policies regarding allowing celiacs into the service before you take the test... I hope it works out for you and where ever you are has different policies than Canada.

 

Have fun in Istanbul!

hasan Newbie
hasan
Posted
  • Author

I like to refer people to this report by the World Gastroenterology Organization, pages 10- 12 it discus the specificity of the tests.  It's a good reference.  Open Original Shared Link

 

Which military are you joining?  Do they take celiacs?  I just ask because up here in Canada, they will not take a celiac into basic training but if you discover you have celiac disease while in, they will (usually) make accommodations for you.  Up here, if you were willing to risk it, the only way to get into the military (as a celiac) would be to join and then get tested later if you can - the military's medical system can make that difficult though. You might want to make sure of their policies regarding allowing celiacs into the service before you take the test... I hope it works out for you and where ever you are has different policies than Canada.

 

Have fun in Istanbul!

I am Joining the Turkish army, which is still obligatory. If it wasn't, I would not have wanted enlist. Life with celiac in the army must be difficult. Turkish army exempts celiacs, but the army phsicians should do the tests themselves. That is why I started the challenge to get sick and get an honorable discarge ASAP. 

 

I ll take a look at the report now, thanks a bunch for sharing :)

 

Cheers to the Great White North

nvsmom Community Regular
nvsmom
Posted

Ahh. Got ya!  Good luck!  :)

 

... Great White North... I'd love to laugh and scoff at that but it did snow a bit last week.   :rolleyes: It's 20C above right now though.  :)

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