Tested Negative This Time?

[diane64]

I was tested in April (blood) for celiac and was told that I might have it. The gastroenterologist said I have celiac, even before the endoscopy. The endoscopy results were "unremarkable". I went to my regular dr for a physical and he retested me for celiac. The office just called and said that I DON'T have celiac. I am going back in on Aug 18 (earliest appointment available) to find out what could be going on. Until then I am told to eat gluten free foods.

Has anyone had an experience like this?

Since eating gluten free foods (almost a month), I have felt a little better.

thanks!

[ravenwoodglass]

That's good news that your test results were negative this time as it shows you are doing the diet strictly. A negative retest is what we are striving for. If you are not eating gluten you are not forming antibodies that are what the test is looking for. Stay on the diet, you were diagnosed and you have shown progress not only health wise but with the negative panel. Good for you and don't let the other doctor talk you out of your diagnosis.

[iamgf]

I was tested in April (blood) for celiac and was told that I might have it. The gastroenterologist said I have celiac, even before the endoscopy. The endoscopy results were "unremarkable". I went to my regular dr for a physical and he retested me for celiac. The office just called and said that I DON'T have celiac. I am going back in on Aug 18 (earliest appointment available) to find out what could be going on. Until then I am told to eat gluten free foods.

Has anyone had an experience like this?

Since eating gluten free foods (almost a month), I have felt a little better.

thanks!

I agree. It sounds to me like you where diagnosed with Celiac, no need to retest unless you want to know that your efforts are paying off. Keep in mind that very few doctors understand Celiac Disease or the testing, and they certainly don't get the gluten-free diet.

There is a new book that will be a godsend for you. It is called, Real Life With Celiac Disease. I have read all of the other books and this is by far the best. It even has a chapter to help you understand the testing. You can Google the book title and find the best price online.

Keep us posted.

[cassP]

your GI is gonna know more about Celiac than your PCP (in theory)... so, continue with his word & the diet. but you should also get copies of your blood & endoscopy results from your GI- to keep in your own file- because this is a disease that the patient really has to learn all they can. the docs are a little behind on Celiac- so it's good for you to really wrap your brain around it and be a PRO.

[diane64]

Thanks for all of the advice.

I called back again and explained that I was diagnosed with celiac, had an endoscopy and am gluten free. The woman who called with the test results did not know that. I am guessing that her job is to call with test results without the benefit of knowing the medical history of the patient! I asked her to check with the doctor on this and am waiting to hear back...

I am finding that I have to do a lot of research myself. How frustrating! It is great to know that I can learn from all of you!

Thanks!

I'll be checking that book out- sounds good!

[IngridBeth]

My blood tests were suppoedly negative as well (I haven't seen the actual results nor do I know the specific tests they did) BUT my doctor diagnosed me as "probably Celiac - certainly gluten inolerant" based on a number of other factors. I feel like his dx is plenty good enough - I am responding to gluten free diet and now learning I have to go dairy free (which is said might happen so I knew, but was in a bit of denial about that one I guess!). I will not have the biopsy because there is no way I will go back to eating gluten.

So, sometimes the tests are negative but as my doctors says, that can happen and be misleading. I agree to let other factors speak louder.