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Coeliac Results and Possible Fructose Malabsorption

This is probably boring for some of you so feel free to skip over this post but I might be helpful for anyone else struggling with the complex coeliac testing or even for just for me to get a better handle on it..
  • So first I tested positive to the coeliac antibodies (200+)
  • I then had negative biopsy which is considered by many to be the "gold standard" for diagnosing coeliac disease so typically that would be enough to say that I don't have coeliac disease since it means that my intestine looks like a normal intestine instead of a typical coeliac one. However it was negative for me but my specialist wasn't convinced so requested that I go gluten free for 6-8 weeks and re-test my coeliac antibodies and do the gene test.
  • My coeliac antibody test did go down from the original 200+ to 90 after eating gluten free which suggested that reducing gluten was having an effect on the test. Although I don't know if that is a conventional way of testing, I haven't found anything about it online at least, so not sure how effective it is.
  • I then tested positive to the following coeliac gene test HLA DQA1*05, and HLA DQB1*02 but not to DQb1*0302 (DQ8).
This is the confusing part. And this is my rough understanding from lots of googling:
  • If you test negative to all of the gene tests then you don't have coeliac disease (which is what I was hoping for). But a positive test result does not automatically mean that you have coeliacs disease, although .90% of coeliac disease patients have both HLA DQA1*05, and HLA DQB1*02.
  • So it looks like I might have coeliac disease but the negative biopsy doesn't make any sense. Although I've read on coeliac forums that sometimes people have negative biopsies and years later get tested and have positive results.
Today I went to see another specialist who suggested that I try the fructose free diet for a week to see if that helps because I'm still getting sick and I have noticed that sometimes it is after fruit. He also suggested that I return to eating gluten free so that I can have another biopsy. Although I still don't understand how a second biopsy would be different and I hate the idea of having another procedure so close to the previous one. I also had a bone density scan today because low bone density is common in untreated coeliacs.

I'm confused. I might try the fructose free diet first and then decide about returning to eating gluten and the second biopsy. Don't get me wrong, I would love to eat gluten again, but to start eating it only to stop again would be worse I think. It took me a while to adjust the first time around. Besides I've already got a new toaster, sifter etc and de-glutened my house.

My new fructose free diet means no fructose foods as well as other foods that are considered 'windy' so no:
  1. apples, pears, mango, paw paw, watermelon, dates, figs, lychee, quince, persimmon nashi fruit
  2. onions, leek, asparagus, artichokes
  3. broccoli, cabbage, brussel sprouts, & legumes (due to their 'wind producing' rather than fructose content)
  4. no dried fruit/fruit juice
  5. no honey (or agave), sorbitol, mannitol & xylitol and sugar free gums
The specialist explained that if I do have fructose malabsorption issues it's not as strict as being coeliac so I would be able to include small amounts of fructose.

But how does a vegetarian survive for a week without the 'wind producing' legumes like chickpeas, lentils?

I might start the fructose free diet next week when I'm finished this week's food co-op box which included cabbage and broccoli.

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