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Gluten Challenge For Diagnosis

lucycouture

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lucycouture Newbie
lucycouture
Posted

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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      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
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