Monday, July 12, 2010

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.


  1. As you point out, there's some good things about being FM rather than GF:
    1. Bananas, oranges, mandarins, coconut flesh, some other fruits
    2. some amounts of garlic are ok (fructans va fructose)
    3. Fruit juice isn't that great for you anyway- liquid cals, no fibre
    4. Maple syrup is ok; not sure about golden syrup though.

    So there's def some good stuff, and I think with FM there are more alternates you can have (eg some fruits) whereas with GF as you've found the GF breads etc are pretty bleh. It's more difficult to explain though, but I think it's prob where GF was 10 years ago and a diagnoses increase so will awareness.

    Hope either way that you get a reliable diagnosis soon and can just get on with things without all this hanging over you!

  2. Kristy you have been through so much, it's a shame no one can give you a definite answer!

    And I totally understand not wanting to eat gluten because having to stop will be difficult. If you do, perhaps only eat gluten out of the house so you don't introduce it back into your kitchen?

    Good luck! xox

  3. it sounds very frustrating - don't you wish they would just know!

    does wind producing legumes include tofu???

  4. Oh boy, I would find it so difficult to cut out all of those things to go fructose free! no juice, beans, onion, broccoli :(
    Goodluck with finding the source of the problem.


  5. How annoying, I thought going fructose free would just mean giving up fruit.
    I hope you get a definite answer soon & get to eat gluteny food.

  6. sucks mate. it took me 10 years to get most of my health shit under control... I feel ya!


  7. As someone who's also had a lot of misdiagnoses and unsure doctors and different treatments in the past year, I really feel your frustration :( I truly hope something gets figured out soon... and that it's the least life-rearranging diagnosis possible.

  8. Rach, I didn't even know about garlic. I thought onions was bad enough :-) My list says that both maple syrup and golden syrup are ok.

    Mandee, I think that's a good idea.

    Johanna, it doesn't say however since tofu is made from soybeans which are legumes I guess so. That's just the trial diet for a week but still it's going to be tricky to get enough protein without any legumes.

    Rose, it's just the trial diet for a week/ I'm pretty sure that after that even if it is fructose that I can return to eating those 'gassy' foods.

    Thanks Vicki, Carla and Hannah.

  9. Sorry you haven't gotten any kind of certainty about what is happening - how frustrating. Hopefully they figure it out, and you don't have to be both gluten- and fructose-free for long. Both at the same time would be nearly impossible!