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Celiac Disease - Coping With
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This part of the forum is for techniques and information on how to cope with celiac disease and the gluten-free diet

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    • For those of you who get this, how long did it last? I am going on 3 months now, glutening 2 months ago.  Popping zofran in the morning and I feel pretty dizzy and queasy the first half of the day. No, I am not pregnant. I also get flu like aches and accelerated heart rate after eating. 
    • That's how he makes his money... of course you will not get them to agree that the tests are bogus! Same with all these " miracle" supplements that claim to " digest" gluten.  If you call them, , of course they are going to say they work! "We only embrace tests that have endured rigorous scientific evaluations. So far, these tests have received no evidence-based support. Enterolab has never successfully published anything on the accuracy of stool tests (nor have any other stool test manufacturers, to our knowledge) making it difficult to confirm the research results. Because of this, we must make our decisions based on what hasbeen published; Harvard, UCSD, and the American College of Gastroenterology all agree that stool tests are simply not sensitive or specific enough methods in screening for celiac disease. We can say therefore with confidence that the test currently being used by these labs is not good enough. In fact, while it is true that about 40% of people with proven gluten sensitivity have elevated AGA-IgG, it is also true that about 15-25% of the healthy individuals who have absolutely nothing wrong also have elevated AGA-IgG. Hence, about 60% of gluten sensitive people do not have elevated AGA-IgG (making the test not sensitive enough); and about 20% of normal, non-gluten sensitive people have elevated AGA-IgG for no apparent reason (making the test not specific enough)."    
    • Hi Gemini, My birthday is in June, so I'm a Gemini too---and I do agree with some of your good points.  I had written that one could EITHER try Dr. Fine's stool sample testing, where his EnteroLab looks for elevated numbers of IgA antibodies to various food proteins (gluten, milk proteins, soy proteins, yeast proteins, etc.), OR one could just avoid eating or drinking or touching suspect food proteins, for at least a month (3 months is better), and see whether AVOIDING eating and touching such proteins causes improvement or not, in one's symptoms and lab test results. I urge you (and anyone else who wonders about this) to speak by phone, with people working at Dr. Fine's EnteroLab,  and state your objections to them, and see what their replies might be. Here's their phone number: 972-686-6869. I called Dr. Fine's Enterolab, and the folks I spoke with there, were nice enough to reply to any questions that I had, including one lady (I believe she was a nurse) there telling me about the "IgA deficiency" blood test called "total secretory IgA", which one can do first, to see whether it pays to try EnteroLab's stool sample testing! From what I understand, Dr. Fine doesn't try to distinguish between Celiac and non-Celiac forms of gluten "sensitivity". This is because although Celiac Disease is VERY serious, it is the "tip of the gluten-sensitive iceberg", meaning, that higher percentages of gluten-sensitive folks are NON-Celiac gluten-sensitive folks, who can also have major health problems, but the non-Celiac folks have "villi" that are sub-microscopically damaged, and thus, this sub-microscopic villi damage cannot be seen under the microscope--but it's there! And, Dr. Fine's point, is that in both Celiac and non-Celiac types of gluten sensitivity, the cure is the same: AVOID GLUTEN! Dr. Fine doesn't use the term "gluten intolerance", because newer uses of the word "intolerance" refers to NON-PROTEIN intolerances, such as "lactose/milk sugar intolerance" (lactose/milk sugar is a carbohydrate, not a protein), and intolerances are not related to one's immune system, while gluten "sensitivity" and other "sensitivities" ARE related to one's immune system, with ingestion (eating or drinking the offending proteins) causing one's immune system to cause the production of antibodies to those proteins that one is "sensitive" to. Many years ago, a friend of my husband, went to a local doc who told my husband's friend to try avoiding gluten. My husband's friend, without being biopsied, went off gluten, and has become well, ever since that day long ago. Some years ago, both my husband and I did Dr. Fine's "EnteroLab" stool sample testing, for gluten sensitivity. My husband came out positive, and I came out negative. My husband has avoided gluten, ever since then, and I try to do so also, to avoid tempting him to cheat, and he has avoided getting colds, etc., the way he used to, before he stopped eating glutenous foods. And, there is much disagreement (I know, because I'm a retired nurse, and I've been a patient now and then) between doctors, about gluten sensitivity, and about anything medical. So, I've learned to be wary of the terms "valid medical institutions" and "valid medical professionals". What may seem valid today, might be disproved tomorrow, and what might not seem valid today, may be shown to be valid tomorrow. Medicine is always in flux, thankfully. If not, medicine would be "dogma". If you call and speak with Dr. Kenneth Fine (M.D., gastroenterologist, "sensitive" to many food proteins himself, including gluten, but not "Celiac") &/or to the folks working at his Enterolab, please let us know what their replies are, to your objections to his lab's work. In the meantime, let's both try to keep an open mind. Sincerely, Carol Sidofsky (wife of gluten-sensitive non-Celiac hubby, and I'm a retired RN/nurse)
    • Where do you live? I was going to go to Cleveland but just got an appointment with Celiac Center in Boston. 5 hour drive next month. Hoping it is worth the trip. Might be worth looking into.   I just educated a lab on DGP yesterday. They just brought a celiac panel in house and i saw they were using gliadin. I think they are running my sample on the old test in-house and sending it out for DGP to see what happens.     
    • Me too, I am not a member of Medscape.    Is this the article?  I goggled the topic and filtered using "news".  (Hope it works!) Celiac Disease in Children: Experts Clarify Diagnosis and Management Recommendations   Here is what I liked.....a gluten sniffing dog for helping kids to remain dietary compliant!   Count me in!  
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