How Do I Get A Diagnosis?

[llynn34]

I have had chronic diarrhea for several years now. I had diarrhea almost every time I ate, constant abdominal pain, full feeling, unexplained weight loss (about 20 pounds) and just plain feeling terrible. About a year ago I saw my doctor and told him I suspected celiac disease. He gave me a blood test and it came back negative so we ruled it out. Since then I have been through nearly every test imaginable. Tons of blood work, several CT's, x-rays, bronchoscopy, colonoscopy, endoscopy, capsule endoscopy, small bowel follow through, surgical lymph node biopsy and bone marrow aspiration, just to name a few. I was first diagnosed with lymphoma but after the surgical biopsy they said it looked more like sarcoidosis. I was put on B12 injections because that was low and I took prednisone for 5 months to treat the sarcoidosis. But through all of this the diarrhea has not gone away. So out of curiosity and desperation I put myself on a gluten free diet. All of my symptoms are gone! I ate blue cheese dressing the other night and was sick within 20 minutes. So I looked up that particular brand and to my surprise it contained gluten! So this tells me that it must be celiac disease but why can't the doctors find it? With all of the testing I can't understand why there would be no signs of it. Unless maybe they just were not looking for it? I don't know where to go from here and would love some advice. I know very little about celiac diease but it seems like I am a textbook case. Can anyone tell me please, how do I get a diagnosis?

[lovegrov]

If you've been through the blood tests and the biopsy and they were negative, but you feel a lot better on the diet, forget the diagnosis. Go gluten-free. You might even be just gluten intolerant or even allergic to wheat and not have actual celiac.

BTW, which brand blue cheese dressing had gluten? Virtually every one I've seen is gluten-free.

richard

[skimomma]

That is what I have read also. Testing isn't always reliable and go with the diet - especially if like you, you feel so much better. My understanding is celiac isn't always the case unless the allergy is so severe that the villi are finally gone. But in the mean time you may be malnourished from having "leaky gut". You don't absorb nutrients like you should. Good luck and I hope better health comes soon!

[llynn34]

If you've been through the blood tests and the biopsy and they were negative, but you feel a lot better on the diet, forget the diagnosis. Go gluten-free. You might even be just gluten intolerant or even allergic to wheat and not have actual celiac.

BTW, which brand blue cheese dressing had gluten? Virtually every one I've seen is gluten-free.

richard

Thanks for the replies. Wow, do I have a lot to learn! The blue cheese was Wegmans brand. I did not know that it contained gluten by reading the label but I looked it up on their website and it was not on their list of gluten-free products. Their ranch is gluten free so I have switched to that and have not had any problems.