Need Recovery Help Please.

[suziq0805 4]

Last week I had blood drawn for testing for celiac disease. My 10 month old son may have it- he severely vomits after eating gluten/wheat, but tolerates gluten-free food fine. So since I realized I do have some symptoms of celiac disease we decided to test me to find out if I have it. The nurse today told me that the doctor said my test results came back ok, but that I could call and speak with him more about it tomorrow if I wanted to (he wasn't in the clinic today). My son's allergy tests came back negative as well, so it looks like celiac disease is still a possibility for him. The doctor said that testing in young kids isn't very accurate...so how accurate is it for adults? Here's a list of things I've experienced over the last few years:

dizzy spells

gas

abdominal cramps

delayed puberty (I think anyway....compared to my friends as I was growing up I went through puberty later)

muscle pain and weakness

some nerve pain and tingling/numbness

slightly elevated ANA in bloodwork a few years ago

anemic after giving birth to my son- but that got better after some iron pills

I was actually kind of disappointed when the results came back fine. I don't WANT to have celia, but I thought it could be an answer to everything I experienced over the last few years. The muscle pain and weakness almost took away my career, but I was never diagnosed with anything. So if I was positive for celiac it would have been a bit of relief since I often thought I was crazy for always thinking something was up when doctor after doctor couldn't find anything. The last couple years have been better for me and I don't experience the symptoms nearly as often and when i do they're not as intense.

[Takala 415]

The blood tests are not completely accurate, but I don't know for sure the % of false negatives.

I do know that the disease is woefully underdiagnosed, and that it is frequently missed, because the standard sequence is that they want a positive blood test to then give the go ahead for doing a biopsy.

You can do one of two things, either a diet challenge where you test yourself to see if you feel better on a gluten free diet, or get medical or an otc genetic test and see if you are a carrier for some of the celiac or gluten intolerant genes. (if you son is formally diagnosed, he had to have inherited it from somebody.... ) Having the genes will not "prove" anything other than you have the official possibility of being in the class of people who can be vulnerable to developing celiac or gluten intolerance. So it would make it more likely.

If the gluten free diet resolves your symptoms, there you have it.

I have no positive bloodwork, but you do not want to get to the point I was at with the peripheral neuropathy (numbness in my hands, legs, and feet) and gluten ataxia (dizzyness) that I had, plus the bone loss in my spine and the chronic kidney problems, vision problems, plus the other stuff, and end up still being told that It's All In Your Head after a brain scan shows bright spots. At least continue to research and test yourself, even if it gets down to you are doing your own diet testing, if the Medical Profession can't get its act together.

If it turns out your son is diagnosed positive, you may want to go on a gluten free diet with him at home, to help prevent cross contamination and to make household cooking and eating easier and to provide emotional support.

[shopgirl 67]

The false negative number is usually said to be about 20%. That's why so many people are encouraged to at least try the diet to see if they improve.

And remember that the blood tests can only test for Celiac Disease

[ravenwoodglass 1,348]

When the tests are postive they are positive but false negatives are pretty common, as another poster said about 20% and I have seen up to 30%. The same applies to biopsies. Also children have an even higher rate of false negatives than adults. Do give the diet a good strict try after testing is done. The body can tell you the answer better than the tests can. It does take some time to heal so give it at least a couple of months.