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Mairin Joined: 21 Jul 2008 Posts: 5	Posted: Mon Jul 21, 2008 8:03 pm    Post subject: Hi All ~ New & Undiagnosed I have been diagnosed with Myalgic Encephalomyelitis (known in the US as Chronic Fatigue Syndrome) which I understand sometimes proves to be misdiagnosed CD. I have a relevant lifelong history of bowel problems, along with other CD symptoms, and did a half hearted GF test which seemed to bring about some improvement in symptoms. I began eating gluten again since I cannot simply go GF free according to my symptoms as I live on a very small disability pension which will not stretch to GF foods. Were I to get a diagnosis, the pension would be adjusted. I cannot get in to see my doctor for standard testing before September as she is out of the country for the summer. So, I am considering using the Biocard Celiac Test Kit which has just become available here in Canada as a kind of first step. It would be good to know where I stand with this (CD) and the news reports portray the test as being very accurate. Reading through your most informative site has made me question this, however. I'm wondering how accurate it is. Sorry to go on! Much thanks! Mairin
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cruelshoes Joined: 23 Sep 2005 Posts: 2550 Location: Washington State	Posted: Mon Jul 21, 2008 8:35 pm    Post subject: Hi, Mairin. I am not familiar with that type of testing. I poked around a bit on the website, and it looks like it is a yes/no type of test. The doctors letter says: Quote: The IgA-class gluten-dependent autoantibodies detected on the test strip by the BiocardTM Celiac Test in a fingertip whole blood sample are the same as those tested in centralized laboratories from blood serum, i.e. the IgA-class endomysial or tissue transglutaminase antibodies. Similar to the BiocardTM Celiac Test, the laboratory autoantibody tests are generally used only for screening purposes with the final diagnosis being based on the histological findings of a small intestinal mucosal biopsy specimen. I don't think this would take the place of traditional celiac testing, which consists of a number of tests. There is always the chance you are IgA deficient, in which case you would not register positive at all on this test. There is not a reference scale with this testing, it would be just a yes or no thing. There is always the possibility that you are on the high end of normal with the bloodwork. Would that register or not? It's hard to tell. It says it tests for IgA antibodies, but which ones? Does your doctor work as part of a network? It is possible that you might be able to get one of his/her partners to order the bloodwork now, and then you would have it in hand to discuss at your appointment in September. Glad to have you on the board. _________________ -Colleen Dx 8/05 via bloodwork/biopsy 10-YO son Dx 11/05 via bloodwork/biopsy Daughters (12 and 2) have neg. bloodwork A woman is like a tea bag-you never know how strong she is until she gets in hot water. - Eleanor Roosevelt
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ostrich Joined: 30 Mar 2006 Posts: 4170 Location: Nebraska	Posted: Tue Jul 22, 2008 6:43 am    Post subject: Hey Mairin! Just FYI, there's lots of foods we can eat that don't contain any gluten. You should check out our recipes sections. _________________ Ostrich :>--O==={ I lie below, you float above In the pretty white ships that I am dreaming of
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Mairin Joined: 21 Jul 2008 Posts: 5	Posted: Tue Jul 22, 2008 1:09 pm    Post subject: Cruelshoes & Ostrich Thanks very much for taking the time to answer my questions. Cruelshoes ~ You addressed my specific concerns. I don't think many people understand the whole IgA conundrum. I would have been completely unaware of it if not for this site. I think I may wait until September. I'm Canadian and we don't have the same system of "networks" up here. My doc. does share a practice, as it happens, but her co-practitioner only treats varicose veins. Ostrich ~ I will check out the foods! I'm not too terribly worried about the transition as I am disabled by symptoms and would be so happy to have something treatable! I have a total food budget of $100 per mo., barring any emergency expenses, right now which does make it all much trickier but, if I do have CD, I would receive extra money for food which would allow me to purchase fresh produce and things like nuts which are impossible just now. Unlike many people who end up here, I would really welcome a CD diagnosis for so many reasons. I would love to have a way to ward of the worst episodes, prevent further decline and, if I'm very lucky, return to a productive life! Fingers crossed! Thanks again, Mairin
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ostrich Joined: 30 Mar 2006 Posts: 4170 Location: Nebraska	Posted: Tue Jul 22, 2008 1:55 pm    Post subject: These threads might also help you out: How much special food do we purchase? How expensive is living the GF diet? _________________ Ostrich :>--O==={ I lie below, you float above In the pretty white ships that I am dreaming of
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Mairin Joined: 21 Jul 2008 Posts: 5	Posted: Tue Jul 22, 2008 2:45 pm    Post subject: Hey, Ostrich~ Thanks! I haven't looked at the links yet but really appreciate the guided tour!
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aklap Joined: 02 Oct 2004 Posts: 8607 Location: WI, USA	Posted: Tue Jul 22, 2008 8:22 pm    Post subject: Hi Mairin, Welcome to the board. I was doing some googling and came across this: http://www.clanthompson.com/news_archives_story.php3?story_id=188&category=Interviews&category_id=2 Quote: Study Shows that Rapid Test Gives Accurate Results for Celiac Disease A simple rapid antibody test enabled primary care nurses in Hungary to detect patients in the community with celiac disease who were not picked up in clinical care. Nurses used the Biocard celiac disease test kit which gives testing results in about ten minutes. 2690 children -- or about 77% of six year olds living in the country participated in the study. Will your doctor accept the results of this test? I do hope you get some answers! _________________ Al “We cannot all do great things, but we can do small things with great love.” Mother Teresa
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Mairin Joined: 21 Jul 2008 Posts: 5	Posted: Tue Jul 22, 2008 8:50 pm    Post subject: Hi Al Thanks for replying. Yeah, I think my doc. will accept the results. I was referred to her by a mutual friend and I think that helps her to see me as a person first, patient second. Also, there has been a lot of press re this particular test up here in the great white north. Doc.s are as swayed by hype as anyone else. In fact, if I did it and it was negative I don't think I'd tell her for fear she might not be aware of the IgA issue and take the results as 100%. Not sure. Incidentally, it's only $50. This is all a very emotionally charged issue for me. While I have made peace with the disabling nature of my illness, I never really accepted that I would not get better. If I don't, ok, I can deal. But........... Celiac could explain everything..... from the chronic bellyaches of childhood through all the weird bowel stuff of adulthood right up to the neuro issues of the last few years. It would be kinda like a miracle. I know, some miracle. Nevertheless... Mairin ETA Thanks for Googling!
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aklap Joined: 02 Oct 2004 Posts: 8607 Location: WI, USA	Posted: Tue Jul 22, 2008 8:55 pm    Post subject: Mairin, Do not give up hope! When it comes to dietary issues and health - I have seen miracles happen. Will this be your miracle? I can't say. Until you try, you'll never know. Have they tested your B12 levels? _________________ Al “We cannot all do great things, but we can do small things with great love.” Mother Teresa
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aklap Joined: 02 Oct 2004 Posts: 8607 Location: WI, USA	Posted: Tue Jul 22, 2008 9:02 pm    Post subject: You might check out The Gluten File - Fibro & CFS. There might be something of use there. _________________ Al “We cannot all do great things, but we can do small things with great love.” Mother Teresa
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