Having Symptoms, After Being Tested Negative

[BabyT]

I've always had stomach problems since birth. I've been in and out of doctor's offices thorughout my entire life, and each time my doctor would basically think im making something up, or just put me on some medication for the hell of it. A little overa year ago, my mom met a woman who had exactly the same problems as me, having reactions to random foods. She told my mom she had Celiac Disease. I went to see a gastroenterologist thinking I may have the same thing, got the whole gammet of testing, only to be told i was negative for celiac. Even though i tested negative, i still feel this is what is bothering me. I tried going gluten free for a while, and if elt 10 times better than i usually did. I'm wondering if maybe it went un-diagnosed because i went gluten free for a while before getting tested... I don't know. But I know that i feel much better when I don't eat any form of gluten. I'm wondering if I do in fact have the disease, or something just like it. Has anyone else experienced this?

[Guest cassidy]

From what I have read on this board, about half the people here have experienced this. I had a negative blood test and biopsy. I went gluten-free the day of the blood test because my mom has the skin reaction to gluten and I figured my test would be positive. I felt so much better that I didn't care when my test was negative. It is difficult dealing with doctors when they don't believe you, but I feel better so I'm sticking to it.

Trust your body. If you felt better being gluten-free, then do it. I think we all just want to feel better, so if it worked for you, do it. There is a lab that does stool & gene tests, that may show you are positive even if the blood test doesn't.

[ravenwoodglass]

I've always had stomach problems since birth. I've been in and out of doctor's offices thorughout my entire life, and each time my doctor would basically think im making something up, or just put me on some medication for the hell of it. A little overa year ago, my mom met a woman who had exactly the same problems as me, having reactions to random foods. She told my mom she had Celiac Disease. I went to see a gastroenterologist thinking I may have the same thing, got the whole gammet of testing, only to be told i was negative for celiac. Even though i tested negative, i still feel this is what is bothering me. I tried going gluten free for a while, and if elt 10 times better than i usually did. I'm wondering if maybe it went un-diagnosed because i went gluten free for a while before getting tested... I don't know. But I know that i feel much better when I don't eat any form of gluten. I'm wondering if I do in fact have the disease, or something just like it. Has anyone else experienced this?

They tested me over and over again and I always showed up negative. Unfortunately it was 5 more years of hell (and 17 thousand dollars a year) before a savvy allergist instructed me on an elimination diet and celiac was finally found. I consider those tests next to worthless for many of us. If a gluten-free diet helped stay with it. Your body knows more about you than the doctors do.

[jnifred]

I had unknowingly been eating very little gluten for years, after I found out about gluten and just looked at what I was eating without changing a thing, I realized that I could go several days without eating gluten. I always knew that too much bread made me feel icky, but never heard of gluten or Celiac and so I just thought it was too "heavy". Anyway..... I tested negative too, but my doctor told me he wasn't surprised since my diet was low gluten for years, not enough anitbodies to show up. I was on the high side of normal, but still normal.

So it wasn't hard for me to cut out that last little bit of gluten, I have found wonderful substitutes for cakes, pizza crust, crackers and such so that I really ahve not missed eating anything. I need to make gluten-free toasted ravioli and crab rangoon, which I know I can do, I just need a whole day to waste on that project and it's not at the top of my list, KWIM?? I feel so much better and my rhuematoid arthritis is much better too. GOOD LUCK

[penguin]

I had unknowingly been eating very little gluten for years, after I found out about gluten and just looked at what I was eating without changing a thing, I realized that I could go several days without eating gluten. I always knew that too much bread made me feel icky, but never heard of gluten or Celiac and so I just thought it was too "heavy".

I noticed the same thing, that when I went gluten-free, I wasn't eating much gluten to begin with. I didn't eat bread regularly, and I was afraid of pasta because it made my stomach hurt (I thought it was the marinara sauce doing it). I don't really even like cake or cookies or donuts much. I think my body was trying to tell me that wheat isn't good for me. It was funny, I was trying to figure out what I would make for dinner now when I realized that 99% of my rotation was gluten-free anyway. Follow your instincts.