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jswog

Stool Tests?

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OK, so all of the doctors here is this little hick town are blooming idiots! I've had people suggest that I look into the stool testing for diagnostics and we're checking with our insurance to see what kind of coverage we can get on that. But my main question is, given that the blood tests/biopsies are totally inaccurate once a person goes gluten free, is this testing as well? I know their web site says otherwise, but I'm more than just a little skeptical...interested in finding out personal experiences...

Thank you!

Jen

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Jen, you might want to read this article/abstract here on celiac.com which has a comment from Dr. Fine who owns/operates Enterolab:

http://www.celiac.com/articles/995/1/Effectiveness-of-Stool-Testing-in-the-Diagnosis-of-Celiac-Disease-in-Children-With-Comments-by-Dr-Kenneth-Fine/Page1.html

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This is my opinion on Enterolab's stool testing.

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Thank you both for those links! Very interesting reading...

I guess I'll consider NOT getting this done to be money well saved. I'm just so frusterated with not getting any results in dealing with doctors to get any sort of diagnostics. In the long run, having the 'official' word from the medical profession (which I do NOT hold in much regard at all) will hold no bearing on what I do or do not eat. I will continue to remain gluten free since after only just one month gluten-free I already feel that I've gained a good 10 years of my life back! My biggest concern is that, if (God forbid) something should happen to me medically, will the 'diagnosis' be taken into account when getting treatment in addition to the fact that my husband and I are trying to conceive and wishing I could have good, sound medical advice concerning ttc/pregnancy with my non-diagnosis.

So what do you think of the genetic testing?

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Well, the genetic testing in the U.S. only tests for two of the celiac genes, while other genes are considered to be involved in other countries. The two tested for in the U.S. are shared by approximately 30% of the population, but only a small percentage of that population go on to develop celiac disease. So the gene tests show only a predisposition to developing celiac, and, on their own, have no diagnostic relevance. When you combine the genetic test with symptoms, positive blood results, and symptom resolution on the gluten free diet, they become convincing even to Dr. Fasano. But once you are gluten free it is almost impossible to get a positive diagnosis. I am undiagnosed. I do not have children so it does not matter to me. To others the diagnosis becomes important, and frustratingly difficult to obtain.

That being said, many celiac/gluten intolerant posters have gone on to become pregnant once they have spent some time on the gluten free diet. I would expect that your chances of a successful pregnancy have risen considerably with the elimination of gluten.

I have recently been hospitalized (more than once) and have demanded that my chart be marked that I am celiac (for all the good that does in the hospital kitchen - which does not really understand what gluten is, let alone where it hides :P ) I have had arguments with the hospital pharmacist over taking my medications versus hospital supplied medications and have refused to take medications whose ancestry is in doubt. We have had standoffs... and in the end the nurses generally give me the meds I brought with me (or my hub brought in), if it was something that I could not go without. When I did not win, I had hub smuggle them in to me -- I felt like a prisoner being smuggled cocaine :lol:

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I have recently been hospitalized (more than once) and have demanded that my chart be marked that I am celiac (for all the good that does in the hospital kitchen - which does not really understand what gluten is, let alone where it hides :P )

I'm still amazed that hospitals - medical institutions! - cannot accommodate a medically necessary diet! If we were diabetic I'm sure they could accommodate. If it were a nut allergy I"m sure they could accommodate. But gluten, noooooooooooo way! I had to go to the ER last year due to a blood clot and I made sure to stop off on the way there to fill my bag with food. All I could think about was having enough food - forget the clot in my leg! lol

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Thank you everyone for your responses! It looks like maybe I'll just have to join the ranks of you all here who are 'undaignosed' or 'self-diagnosed'... It's just hard for me to accept that I'm not going to get that official seal from the medical profession (which I'm not sure I fully understand why it bothers me as have very little respect for it), but it is really not going to change a thing as to how I approach life at this point. I have begun this journey and am not looking back. Sure, there absolutely foods that I miss, but that pales in comparison to how LITTLE I miss feeling like crap every day!

Jen

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If there were some sort of "official" seal for gluten intolerance there would be a LOT of happy people around this board! I'm personally waiting for celiac testing that doesn't require me to poison myself, mostly out of curiosity.

Remember that in many emergency health situations your medical records are not available. Nobody will know one way or the other if you lie and say you were diagnosed with celiac disease in childhood. :P

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If there were some sort of "official" seal for gluten intolerance there would be a LOT of happy people around this board! I'm personally waiting for celiac testing that doesn't require me to poison myself, mostly out of curiosity.

Remember that in many emergency health situations your medical records are not available. Nobody will know one way or the other if you lie and say you were diagnosed with celiac disease in childhood. :P

Very good points, Skylark! Very encouraging! Thank you very much!

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