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Gluten Challenge For Diagnosis
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Hi everyone! I'm new here and about to face a gluten challenge...

To recap, I've suffered with bad gastro symptoms for my whole life, but they got worse in my teen years (I'm 26 now). In 2006 I had the TTG blood test for coeliac disease, which came back positive with incredibly high numbers. I then had a biopsy which came back negative, so I was sent away with a diagnosis of IBS.

My symptoms continued and I wasn't taken seriously again until 2010 where I had the TTG blood test again. They said sometimes the stomach biopsy can only take from healthy tissue and miss the unhealthy tissue if it's patchy, so if the results were positive they would do a more detailed biopsy. This time the blood results came back completely negative. However, this year I had been on and off gluten free diets and hadn't eaten wheat bread or pasta for years. I hadn't completely eliminated gluten, but certainly wasn't eating a lot.

This year I was put under a dietitian and put on the low-FODMAP diet for IBS. I showed some improvement but my symptoms didn't completely clear up. Mainly diarrhea (steatorrhea), cramps, bloating, nausea. The diet is very low in gluten but not gluten free.

So now my dietitian and gastroenterologist have looked through my history and think that they may have missed affected patches with the first biopsy and then I had a false negative result in 2010 because I wasn't eating enough gluten... and they want me to do a gluten challenge this month and then have more tests. Which means I have to stuff my face with it for a month or so to get the antibodies back then have blood tests and biopsies again!

I just wondered if anybody else has done this and what their experiences were? I ate two pieces of bread on Tuesday evening and was in agony all day Wednesday and yesterday. I haven't had the courage to eat any more as I am so terrified to feel like I used to... I became agoraphobic and didn't want to leave the house because I had diarrhea all the time and didn't even feel like socialising because I felt so rubbish. I do want a proper diagnosis because I think all signs point to coeliac disease, but just wondered if anyone had some advice or information from doing a similar gluten challenge?

Thanks!

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    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Is coffee glutem free or not ?  Always wondered about this ............. got to have my coffee... I am new to this  , very new .........
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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