Guest guest Posted May 24, 2001 Report Share Posted May 24, 2001 In a message dated 5/24/01 2:12:34 PM Eastern Daylight Time, info@... writes: > > > Celiacs can be under or overweight so that means little. I'd say you show > very classic symptoms of CD. The other telling " symptom " is that you're > undiagnosed. The average time for diagnosis from the onset of symptoms in > the US is at least 10 years. I'm getting to the point where if I meet > someone who tells me they have something wrong with them and their doctor > can't explain it, I tell them they probably have CD. It has a wide range of > sometimes perplexing symptoms and (as studies are showing) it's far more > prevalent than previously thought. Some organizations are still saying 1 in > 2000 have it. Random blood screenings from the U of land are showing > that as many as 1 in 150 of the general population have CD. That's the > GENERAL population. If you are in a high risk group (ie. have relatives > with cd) it's 1 in 12. > > Couple of things to note. An IgA test alone wouldn't necessarily show > celiac. You need the anti-endomysial antibody (lgA EMA) and anti-gliadin > antibody (lgA & IgG), and tissue transglutaminase (tTG IgA) tests. These > tests are something like 85-90% accurate, but the only accepted " true " > diagnosis is still the small bowel biopsy. > > If you (or your doctor) need help with interpreting the results, I'd > suggest you give Kupper at the Gluten Intolerance Group > ( ) a call. I've heard she's very helpful. > > Also if you are on a GF diet or even partial GF diet, many of these tests > will show false negatives because you need the antibodies (blood test) or > the damage (biopsy) to confirm diagnosis. > > Definitely pursue this. CD can be life threatening if not treated. The good > You seem very knowledgable on the celiac subject...a question for you: My son, almost three, had a positive anti-gliadin antibody result and a negative IgG result. The pediatric GI that we went to see told me that the test result meant NOTHING...and further she didn't see the purpose in doing the endomysial and transglutaminase tests since his bowel movements had not improved since we started him on a gluten free diet that he probably didn't have celiac disease. I have since read of people who went off the gluten free diet, had their blood tested and came back with " normal " results.. What gives? I can't get a doctor here to help me with this. Thanks for any input you can share. M in Upstate NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2001 Report Share Posted May 24, 2001 >You seem very knowledgable on the celiac subject... I'm reasonably knowledgeable on celiac disease, since I have it... >My son, almost three, had a positive anti-gliadin antibody result and a >negative IgG result. The pediatric GI that we went to see told me that the >test result meant NOTHING...and further she didn't see the purpose in doing >the endomysial and transglutaminase tests since his bowel movements had not >improved since we started him on a gluten free diet that he probably didn't >have celiac disease. Not being a Doctor, its hard to argue...BUT...I'd say close to 80% of the people I meet with CD have been told by at least one doctor, and sometimes more, that there was NO WAY, 0%, NEVER a chance that they had CD. I wouldn't take no for an answer and get a second opinion from someone who specializes in CD. Also, in some people with acute CD, , it can take many months for the extremely flattened villi to recover and normal bowel function to recover. From what I have read, in people with biopsy confirmed CD, IgG antigliadins are only likely to be found in about 73% of patients, IgA antigliadin's are found in 83% of patients, IgA anti-endomysial antibodies are found in 100% of patients. >I have since read of people who went off the gluten free diet, had their >blood tested and came back with " normal " results.. What gives? I can't get >a doctor here to help me with this. Not sure what you mean. If you have celiac, you have celiac...for life. People with CD who go off the diet risk many complications including osteoporosis, anemia, and high risk of fatal lymphoma, regardless of what blood work says. Remember that the blood analysis is only about 85% accurate. One of the best articles I've seen on diagnosing CD can be found at http://www.aafp.org/afp/980301ap/pruessn.html Print it out and take it to your MD. ---------------------------------------------- Jay Bigam Marketing and Information Technology Manager Kinnikinnick Foods Inc. www.kinnikinnick.com Toll Free: 1- Quote Link to comment Share on other sites More sharing options...
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