Why Are Knowledgeable Doctor's So Hard To Find?

[eden-arteaga]

I live in Los Angeles, San Fernando Valley area to be exact. I've consulted 3 doctor's already, one GI and two General Practitioners. Nobody seems to know anything about Celiac's or how to test for it. After having stomach problems for nearly four years, constant diarrhea, bloating, cramping, and nausea when I eat the only answers I've gotten is you probably just have IBS or acid reflux. When my first cousin was diagnosed six months ago with Celiac's I started doing my own research and tried eating Gluten Free. I've been Gluten Free for about two weeks now and I'm feeling a lot better generally speaking. I only have gotten sick a few times. Even though it seems to be Celiac's, ( I've also been anemic for years, gotten frequent headaches, and light headedness along with the GI symptoms) I would like to know for sure! So far my GI has tested for ulcers & gallbladder disease. When I asked him to test me for Celiac's his reply was "if it looks like a Zebra don't go chasing a Horse." I recently left him a message asking him again to test me for Celiac's since my other tests came back negative, and since the Gluten Free diet seemed to be working and he hasn't returned my calls. My other two doctor's have stated that they would need to do more research and they are not familiar with even how to do the blood tests for the disease. Does anyone know a Doctor in my area with knowledge of Celiac's? I'm beginning to get so frustrated with the whole thing, it makes me want to say forget it!!

[queenofhearts]

I really feel for you, Eden. My previous doctors didn't catch on to Celiac's despite 20 years of recurrent diarrhea, anemia, joint pain & migraines. It was only elevated liver enzymes (& even then a clear CAT scan) that finally got me a referral to the wonderful specialist who almost instantly diagnosed Celiac's just from my list of symptoms. Endoscopy confirmed it. It's distressing that even your GI specialist isn't seeing the pattern, but my first GI didn't either. (Good ol' IBS was his diagnosis.)

I hope another L.A. Celiac can help you find a doctor who knows what he/she is doing. But be careful of following the gluten free diet before you are diagnosed as it can throw off the test results.

Hang in there! You sound exactly like me pre-diagnosis, so keep fighting to get tested.

Leah

[eden-arteaga]

Thanks Leah! It does seem like we've had a few similar experiences. I appreciate the support!!

[Samantha]

Eden:

Go to the Celiac Sprue Association website (csa.org) and look for local units or use this link Open Original Shared Link

Someone there should be able to point you in the right direction.

I have really bad news for you, though. You are probably going to have to start eating gluten again before you're tested so that they can get a positive diagnosis.

Good luck!