Whether To Pursue Diagnosis

[indigoani]

I have had mystery health problems for years, which in the past two years have become so bad that it has been difficult to function. Most doctors wrote me off as depressed, some as "developing an auto-immune disease," and said wait and see. I recently had a doctor suggest trying elimination diets and now that I have removed dairy and gluten, I am a new person.... When I came to my doctor with this information, he said I should have blood tests done for the celiac antibodies & see a nutritionist if they were positive. They came up negative. At this point I had been gluten-free for over two months. He suggested that perhaps I just had a wheat intolerance. I was a little apprehensive b/c both of my brothers have problems with gluten, but I took his advice and stopped watching labels as carefully... and bam! got sick again. The culprit turned out to be barley malt in some rice cereal I was eating.

I am completely convinced at this point that I have a problem with gluten. I guess I am just stuck as to whether or not pursuing a diagnosis is necessary. For one, I am not clear as to the difference between an intolerance and celiac disease. Two, after all my bouts with doctors, and their complete lack of support, I am not thrilled at the prospect of trying to convince another one that I need help.

This is what I do know, however. One, from what I have read... I have a lot of the symptoms. All of the gastrointestinal problems for sure. In addition, I have severe decalcification of my teeth, muscle weakness, tingling in my feet, edema, extreme hunger, bruising, muscle twitching, menstrual irregularities, and severe fluctuations in weight. All of my problems actually started when I just magically dropped 20 lbs. when I was already at my ideal weight. I was eating everything in site. With all that, I find it hard to believe I don't have a major problem with gluten... and yet with the negative blood work, I find myself second-guessing that declaration.

Now that I am on the mend, I thought I didn't care if I had a diagnosis or not. I do feel, however, sort of lost. It's not that big of a deal, but some support/guidance would be nice. I am also still having some occasional gastrointestinal issues and edema and find myself wondering why. Am I not being careful enough? Does it just take time to heal? What are the steps I can be taking to speed my recovery and ease my symptoms in the meantime? Or... am I just wrong about what's causing all this?

Any thoughts or comments would be greatly appreciated. thanks

[Guest nini]

welcome! my personal opinion is that since you already have your answer, it is not neccessary to pursue any more testing. I also believe that Celiac and gluten intolerance are the same thing, if you were already gluten-free when you had your blood tests, that would skew your test results and give you a false negative. From what I've learned, the positive dietary response is the most valid diagnostic tool around, AND regardless of if it's Celiac or gluten intolerance (which I think is the same thing) the treatment is the same. Lifelong adherence to the gluten-free diet. So my answer to you is, just stay gluten free and do not doubt what your body is telling you.

[ianm]

I went to doazens of doctors and they didn't do a damn thing other than write lots of prescriptions. I had such a dramatic response to the diet and that was good enough. I don't need a doctor to tell me what my body had been telling me for years.

[Guest nini]

I went to doazens of doctors and they didn't do a damn thing other than write lots of prescriptions. I had such a dramatic response to the diet and that was good enough. I don't need a doctor to tell me what my body had been telling me for years.

Ian, YOU ROCK!!!!

[Nancym]

If you're gluten free it is too late for an "official" diagnosis because you have to have been eating gluten all along to have any shot at all as showing up celiac... unless you use enterolab.com.

What I did was just give it up and noted how much better I did. Then I did the enterolab testing, got told about my casein intolerance, gave it up too. I told my doctor's and they're taking me at my word, especially given my history of autoimmune issues and arthritis issues.