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