Worried It's Not Celiac

[mimi1231]

I was tested for Celiac today after seeing 6 different doctors concerning bloating, cramping, hip and back pain along with a whole host of other things I thought were related to ovarian cancer! After an ultra sound came back negative for that most of the doctors I saw either wanted to put me on birth control or just send me home literally saying I don't know what it is. Finally this last doctor brought up Celiac and now that I have researched it I am almost positive it is what I have. It seems there is a huge link between Bulimia which I have had for over 10 years and Celiacs disease. My fear is that my test will come back negative and now I am back to square 1. Has anyone's test come back negative only to be positive later?

[ravenwoodglass]

False negatives in testing are common. What you need to do is to try the diet after all testing is done. The trial needs to be strict and is best done with whole unprocessed foods. Your in a good place to learn what you need to do while you are still going through the tests. After the testing is done try the diet, you don't have to wait for the test results and your body may give you the answer before the tests results are in.

[Kay DH]

All your tests can come back negative and you can still have Celiac or gluten sensitivity. In other words, after all your tests are done then it is good to go gluten-free, and gluten is hidden in a lot of places. Even minor CC from utensils that have touched gluten-foods, hydrolyzed vegetable protein...etc can cause symptoms. I was tested two years ago and the Celiac Panel came back negative. I just had minor GI problems after getting sick in Peru, plus a rash I've had for 40 years. Jump to last September. I got the flu combined with high stress and 1-2 weeks later multiple symptoms such as D, brain fog, lethargy, depression, very stiff joints, and muscle aches. The rheumatologist just said to take aleve for the arthritis and if it gets worse... So, being medically stranded I researched the arthritis and found that it can improve if someone is gluten-free, so that is why I started. For me it only took 3 days for most of my GI problems to go away, the arthritis after 1.5 months, and my rash about 6 months. I took the Celiac Panel blood test in Jan, after being gluten-free, and it was a false negative. I do have HLA-DQ8, but the GI told me that only gave me a 10% chance of having Celiac. He had me on the gluten-full diet for only a week and only did one duodenum biopsy, so the biopsy was negative. The diverticulitis he thought I had instead, was negative as well. The only diagnosis I have is my GP telling me not to eat gluten. So, the short answer is that all your tests can come back negative and you may still have Celiac. My rash was probably dermatitis herpetiformis, but I can't get the skin biopsy because I'm gluten-free, and there is no way that I am ever going to go on a gluten full diet again. One week sick was enough to tell me that. You are in a tough place emotionally, we've all been there. Not knowing is hard. Should you go gluten-free then there will be a transition period as well, a grieving as your life changes for the better. This may sound a bit odd, but gluten pervades much of our food and social structures, so it takes time to be very glad about being gluten-free.

[sb2178]

Yes. I tested negative in 2004 and then again this spring, only to have a very weak positive in May. Diet is working wonders. Give it a good strict try if you have negative tests to see if it makes a difference.

I even tried re-introducing wheat, and was miserable afterwards, so it's pretty clear that gluten is the issue whether or not I have full blown celiac disease, some variation, or so-called latent disease (where there is not yet extensive biopsy-detectable damage to the intestines, but such damage would occur with additional exposure).