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  1. It takes time for the damage in your intestine to develop. It's possible that you were scoped before that had happened. It's also possible that you carry the gene but don't have active celiac, and that your symptoms were something else.

    You have two choices: go gluten free without an official diagnosis, or continue to eat gluten but get tested periodically because you might test positive later when more damage has developed.

    What I wouldn't do is go gluten light. That might mean that you don't have noticeable symptoms anymore but do damage on the inside that will creep on you later. I'd say go 100% gluten free or keep eating enough so that you can be retested later.

    Pauliina

    this is what I want to find out, if you can have the gene for it but not actually have the condition. as I stated my dads test were basically the same as mine but he has had stomach problems for year and years. He is 61, I dont think he is going to change anything at this point in his life.


  2. I had negative blood tests and biopsy 2 years ago (see my signature below) but still believe I have celiac. I believe the biopsy was taken in the very early stages of the disease and didn't show damage yet.

    Did you feel better on gluten free?

    After being gluten-free a few months, I decided to eat gluten again to see what happened. It wasn't an immediate effect, but within about 24 hours I was VERY VERY ill. So it might take longer after to have eaten the wheat to get sick.

    I was very frusterated w/my doctor for a long time because he wouldn't do another biopsy. But then I felt so much better on gluten-free, that it just didn't matter...

    thanks for the response, very interesting. I hopey you dont mind but how old are you, I am 33. My daughter was diagonosed with Type 1 in 03' when she was 3. I dont know what came first, the diabetes or the celiac as they did not test for it when she was diagnosed.

    I have never felt really ill, I just started feeling bloated. Before my biopsy my goal was to eat as much gluten as possible and never felt that bad.

    I dont mind living gluten free as we already have all the food I just would like to know whats going on one way or another.


  3. I have no idea what to do but I am not getting any help on this from my doctor. I will try to keep this condense yet explain the factors involved.

    1. My daughter has diabetes and celiac desire which was confirmed with biopsy May of 06'.

    2. I started feeling very poor in february, but it was more feeling tired and lethargic. Massive stress also seemed to coincide with that period.

    3. Doctor ran normal blood tests and I forgot to ask for the celiac test which I knew I needed to do. blood test were fine

    4. started feeling bloated and stomach cramps. first time in a long long time I had either. I NEVER have any problems with my stomach or gi system.

    5. ask doctor for celiac test, the test came back positive or as it was hand written "suggestive" of celiacs but it was like two positive test items and three negative items.

    6. consulted my gi doctor and she said given my daughter and the tests its highly likely I have the condition.

    7. doctor takes 10 biopsies, all NEGATIVE. Doctor says she was shocked given my daughter.

    8. redo all the blood tests, basically same conclusion, the DQ2 I believe was positive and the DQ8 negative. The report also stated that 39% of all people will test postive for one but not the other.

    9. at my strong suggestion my dad gets tested and his results mirror mine

    10. so far only the doctors nurse has called me back and said it was mixed blood work, I ask what do I do moving forward and her suggestions, and I am not kidding "maybe you should not eat so much wheat"....after calming down I told her to have the doctor call me so I can figure out how to live the rest of my life. Have not heard back.

    Are these strange results, is this just part of the condition. My stomach never really was in that much pain if I had to rate it between a 1 and 10 I would say a 3 for a breif period. Had a bunch of wheat today after going gluten-free for a few weeks (pretty easy to do when your daughter has it) and no pain, nada, feel great. can you be a carrier but not actually have the condition?

    I really dont know what to do