Need Advice About Testing

[SabrinaLuvsGluten]

I am awaiting test results that I called and had my doctor call in for me. Before hand, I didnt know you were supposed to eat alot of gluten so that the test would have a better chance of being accurate. I did eat homemade flat bread using whole wheat flour a few times that week, and the night before the test I ate some cookies made with flour and oats..but I dont know if that wouldve been enough to show up on the test. Do you guys know? Im a little afraid to go "completely" gluten free right now because I wonder if the GI doctor I go to will want me to go back on it to re test if these come back neg. I am almost convinced I Have it, due to it being in my family on my fathers side, my symptoms, and the fact that my c4 complement test came back abnormal, and everything was ruled out EXCEPT malnutrition. I feel so much better after just 4 days of being gluten free. Would it be worth me feeling bad again just to do more testing? I want a definite answer because of my children. I cant get my oldest, who is 20 months, to eat any form of wheat, not even CREAM of wheat. He only likes oatmeal and babyfood, and I dont know if oatmeal would be enough to show up on a test since its just x contaminated with gluten. Does anyone have any advice? Should I Just go ahead and stay gluten free, and keep my children gluten free, or should I wait and see if they want to retest after eating gluten everyday for the testing? I dont want to feel bad again, but I dont want to go through all the hassle if I dont have too of being gluten-free..I KNOW it is though. Im just so stressed and confused about the whole thing. If I go gluten free now and end up having to do it later, I will be even sicker from eating it, but if I go gluten free now, I will be sick everyday! What if I just dont purposely eat gluten, but dont worry about x contamination..then would I have enough in my body so that if I did have to eat it again for testing that it wouldnt bother me as much? Help!

Sabrina

[celiac3270]

Most doctors will recommend about three months of a normal, gluten containing diet for positive results. Of course, a few days of gluten-free sprinkled in there won't really effect the results, either.

I believe that 20 months is too young for testing, anyway. I think you are supposed to wait until some age like 3 years? Someone can give a more accurate statistic, but I know 20 months isn't old enough. And little wheat in infancy is helpful when it comes to prevention of celiac disease....that, and most importantly, breast feeding.

I think that you should decide to eat gluten-free or not based on how you would react to negative results. Would you believe strongly enough that you have celiac disease to stay gluten-free or would you want to retest having eaten gluten. I'd base it on that cause you don't want to go gluten-free and then have to go off the diet for three months for testing and then go back.....better just to eat gluten for a month....that's my view.

-celiac3270

[tarnalberry]

celiac3270's right - a recent study showed that many kids tested at 2.5 years came out negative in 'scopes, but when retested at 3.5 years, came out positive. 20 months can be too you for tests to be accurate. (Sometimes, not always.)

As for whether or not you need to have a doctor's diagnosis... only you can answer that question. My blood tests were inconclusive and my dietary challenge positive, my doc was with me on going gluten-free. My allergist, however, doesn't think I have it, based on those two items alone. I don't care what he thinks, though, because I have to make my own health decisions myself, with my doctors as guidance, but not determiners, of course.

If you need the "definitive" dx, then go for it, but you'll need about 3 months of 3-4 slices of bread a day (minimum) for accurate results, according to most conservative estimates. Maybe those three months are worth it for you, given that you'll have the dx for the rest of your life. Maybe, given the circumstances of your life, it's a good time, or it's a bad time. It's a hard thing to determine. Good luck making your choice!

[SabrinaLuvsGluten]

Thanks guys! I think I already know that I feel a whole lot better not eating gluten, but wanted a positive answer, atleast for my kids sake, so I would know whether or not to put them on gluten free. I guess it wouldnt hurt to put them on it anyway, right? I guess I have alot to think about...I just dont want to feed them things that may hurt them just in case.

Sabrina

[celiac3270]

You'd probably be better off if your kids had a formal diagnosis--otherwise, if they're eating gluten-free without knowing for sure, they might regret the limitations of the diet, feel fine, and therefore wonder what the whole point of it is. If you have a formal diagnosis, then regardless of what symptoms they have (or absence thereof), they know they really have celiac disease--incentive to actually stay on this diet.

I think for you it's a matter of personal preference. Some take the stand that if they feel better gluten-free, they don't need a doctor to tell them they have celiac disease, others would like to have a formal diagnosis so they don't question it later in life. It's a personal choice, though.....