I have been diagnosed as having GERD, and Barrett's Esophagus, as well I have had bone/joint pain, chronic dihharea and constipation for years and have been having floating stools periodically for the past several months. I went for endoscopy/biopsy which revealed mild folds on the duodenum. The results from biopsy came back Celiac negative. However, I'm not so sure. My father is both Celiac and suffering from leukemia. At 68 my father was diagnosed as having GERD, Barrett's Esophagus, and IBS, and he went for a biopsy which came back Celiac negative. Then at 70, he went for a blood test (he wasn't even checking for CD), and it was shown that he had both full-blown CD and leukemia. My condition looks suspiciously similar to my father's. Furthermore, CD runs in our family: my father has CD, one uncle (father's brother) has CD, my grandfather (father's side) had both CD and Diabetes type 1, and my grandmother (father's side) had diabetes type 1, parkinsons disease, and chronic renal problems. I am presently taking medication to control the GERD and have been told to lay off lactose. However, the doc told me not to worry about gluten right now, but said I could always get the blood test to see if carry the HLA gene. So to get to the point, what do you think are the chances I may latent CD or may be gluten-intolerant? And, further, do you think it is worth my while getting the blood test for the HLA gene? How indicative is this in determining whether I have latent CD or should lay off the gluten? Would love to hear your thoughts.
Forget the doc's recommendation and get the test. Make sure several parameters are checked not just transglutaminase. Ask for
1. Anti-gliadin antibodies (AGA) both IgA and IgG
2. Anti-endomysial antibodies (EMA) - IgA
3. Anti-tissue transglutaminase antibodies (tTG) - IgA
4. Total IgA level.
5. Gene test (allele) if possible.
IMO the fecal antibody test and allele test is better than the blood test, but the blood test is better than nothing. If you want to check out the fecal antibody test, go to enterolab.com.
Thanks, I have just researched Dr. Fine and enterolab.com, and I'm convinced it's legit. I will definitely take Gene Test for Celiac Sprue (swab), and possibly the stool test as well. The only problem is that I live in Japan. I will be in a Hawaii in January to attend a conference. Should I order my testing then? or is it possible to do the testing from Japan and then send to enterolab in the U.S.? Frankly, the sooner I can get to the heart of this the happier I'll be. For anyone who has ever experienced either gluten or lactose sensitivities, it can be a real pain. I don't want to wait any longer...sooner, the better.
Glad to get the advice!
Once again, thanks! I received an email from Karen at EnteroLab and she was most helpful and courteous. She said based on my symptoms and family history that it very likely that I am glucose sensitive and could very well be becoming celiac at the moment. She suggested I go on a gluten-free diet for 3-6 months and see if I might not start feeling better. Also, she told me if I wish to order the cotton swab gene test that it is $149 plus $25 shipping and handling to Japan. She said it should take 2-4 weeks to get here. Also, I got an email from my younger brother who has tested positive for both the HLA-DQ2 and HLA-DQ8 genes. Please find a copy of my brother's email below:
"Hi (my real name), Dad who has been celiac diagnosed had the genetic marker test (in addition to positive blood and biopsy testing) and he obviously came back positive for the gene. I have had the genetic marker test and came back positive for both marker genes. I have been faithfully avoiding wheat for several years and so I haven't bothered to have the biopsy or the blood test. They do remind you that having the gene does not necessitate that you will be celiac and not having the gene does not ensure that you are not. If you are strongly considering a wheat free and/or dairy free diet/lifestyle switch but you are on the fence then maybe you should do it. If being positive for the gene would be the last straw then by all means do it. In my case it mainly served to confirm what I had already felt (I think I would have continued to at least minimize if not avoid those foods anyway regardless of the presence of the gene because they at the very least did not agree with me). Good luck with your decision"
I think based on my brother's email that it would be a very good idea to get the gene test. If my brother has both genes, wouldn't that mean he got one from my father and one from my mother? And would that increases my chances, too? Would love to hear what other people think. Thanks!
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