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Gluten Challenge For Diagnosis


lucycouture

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lucycouture Newbie

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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    • Fayeb23
      Thank you that’s really helpful, hopeful won’t have to have a biopsy.
    • RMJ
      That means the normal range (i.e. not celiac disease) would be a result less than 14.99.  Your result is WAY above that. Some gastroenterologists would diagnose that as celiac disease even without a confirming biopsy because it is more than ten times the top of the normal range.
    • Redanafs
      Hi everyone. Back in 2022 I had blood work drawn for iga ext gliadin. Since then I’ve developed worse stomach issues and all other health issues. My doctor just said cut out gluten. He did no further testing. Please see my test results attached. I just need some direction cause I feel so ill and the stomach pain is becoming worse. Can this test show indications for other gastrointestinal diseases?
    • Fayeb23
      Thank you. These were the results TTG ABS NUMERICAL: > 250.0 U/mL [< 14.99]  Really don’t understand the results!
    • Scott Adams
      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
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