Tests, Frustrations, Unknowns

[kitchenofdanger]

I should probably give some background on my problem/issue....My Grandfather is celiac and my mother is celiac. I also have a niece that is confirmed celiac, another that is suspected celiac and a sister who is suspected celiac. Lately, I have had diaharrhea just about every time I have a bowel movement, and when I don't have loose stools, they float. This is the problem. I went off gluten for about a week and when I went back on to gluten, it was inconclusive. Also, I had the blood test done, and it came back negative from the lab my doctor sent it to, including the new transglutaminase test.

I can't ignore the fact that I tend to have really bad diaharrhea about 24 hrs after overdosing on bread or wheat products, but my doctor's answer is to try to put me on IBS meds (not something I am willing to do at this point....)

I guess I am trying to figure out my options, as I'm not sure I want to commit to a gluten free lifestyle unless it is necessary....What are my other options at this point? Also, if I were to go off of gluten and it were to help, then how would I go about getting my doctor to agree that it probably is celiac disease when I just had a blood test that came back negative? I suspect that it came back neg because I don't eat a whole lot of gluten to begin with....

In a quandry,

Ruth

[darlindeb25]

morning ruth a week really isnt enough of a test--sometimes it takes longer then that to feel better--even antibiotics dont work instantly--with your family history, i am willing to bed that you have celiacs--when reading this forum you will find many many people who have tested negative, but still have celiacs--sometimes, i feel the test results are only as conclusive as the person reading them sees them to be--i dont feel that patients are always taken seriously--i was diagnosed with IBS for years and was just told to cut back on my stress--i dont feel i was ever taken seriously--i truly feel that IBS is a doctor's way of saying he cant find anything wrong and it's all in our head if i was you--i would give gluten free a real chance--you usually do not feel better overnight--you have to give your system time to heal---deb

[lovegrov]

I have to agree that a week isn't nearly enough time to determine anything.

richard

[tarnalberry]

yep, a week isn't long enough. try being _strictly_ gluten-free for a month or two (or three!) and then have a lot of wheat at one time. (the purest type of wheat is best - bread has eggs, yeast, and so on that you could also react to. plain pasta or bulgar is a good thing to try to see if you react.)

[kitchenofdanger]

Thanks for the info. I can't say that I like the idea of going gluten-free without a true diagnosis, but I'm definitely considering it....I guess the next question is whether I should wait until after I get the enterolab test done to go gluten-free....If not eating enough gluten regularly will skew the blood tests, then wouldn't it do the same thing for those?

If I did go gluten-free and did not have the tests to back it up, what are my chances of doctors believing me? It worries me that I wouldn't be able to get a doctor to believe me without having the tests, etc to back it up....

I'd appreciate any input

Ruth

[ryeanddiet]

Ruth,

definetly get tests done before you go gluten-free, otherwise you risk the tests being negative.

I had positive blood so went gluten free for 8 months and every symptom corrected itself by month 5. Then I saw a GI who insisted the biopsy was the only conclusive proof. I've been back on gluten and suffering for 3 months in prep for my endoscopy tomorrow.

You may or may not find a dr who'll accept 'gluten-challenge' (the diet) as proof, but many on the board will agree it's the way to know what works best for you. Even if my test is neg tomorrow- I'm going gluten-free. I know how I feel.

I'd advise you to try different dr's if you want the medical diagnosis before gluten-free as it is harder to go back on once you've been off.

best of luck!

jen