mamabear
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Latest Celiac Disease News & Research:
Everything posted by mamabear
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ARCHIVED Painful And Difficult Swallowing
mamabear replied to mamabear's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Hello everyone......first chance I've had to get a reply back. GI called today and the biopsies are all negative. The speech pathologist evaluation with barium/fluoroscopy was also reported as normal, although the speech pathologist said to me that there was a very slight delay with solid foods. GI says all normal, so now he wants me to come in and more formally... -
ARCHIVED Painful And Difficult Swallowing
mamabear replied to mamabear's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Thanks to everyone for your ideas and support. As an unusual aside, I think I'm allergic(real allergy) to Propofol ! I woke up with a fairly textbook drug allergic RASH ! I've never done that one before.......I usually listen to what my body is trying to tell me, and it says it's more than being anxious about all this, but after all this, I'm starting to... -
ARCHIVED Painful And Difficult Swallowing
mamabear replied to mamabear's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Thought through both of these(great ideas BTW) and have plenty of salive, no dry eyes,no stiffening or waxiness of digits......no other muscle weakness but ought to do all the lab. Thanks for the push. I also thought of tertiary contractions of the esophagus with spasm;eosinophilic esophagitis;ALS ( no speech problem); but I get such oddball illnesses with... -
ARCHIVED Painful And Difficult Swallowing
mamabear posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
I have had 5 weeks of difficulty swallowing. It is painful most of the time, and my thyroid is not the problem(TSH well replaced and not suppressed;thyroid usg with scars{thyroiditis} and no nodules). I had an EGD yesterday and am having even more trouble after the biopsies with throat and upper chest pain. I figure if it had been heart, I'd have been gone... -
ARCHIVED Gluten-free Businesses
mamabear replied to little-c's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Ditto!!!!! -
When I met him in Memphis, he stated he did not have celiac disease, but ate a restricted diet of mostly nuts and grains...kind of a pre-Paleolithic type diet. That was 3+ years ago, so something could have changed since then......never said it was Kosher either.
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Very true, Deb.....as recently as 10 years ago,even at THE Mayo in Rochester, it was thought it was 1 in 10,000. It's a real problem getting the US docs to understand that they are off 2 decimals!
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Laurie, Your points are well taken about the lack of diagnoses being made in the USA. I think the GI's have boxed themselves into being scope machines....too much technology and too little thinking time, and they feel the tissue transglutaminase is the end all be all in serology. They must be using a broader range of signs and symptoms to diagnose in Europe...
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I agree,Momma Goose....Very interesting. I wonder how many new forum members are added here alone per year? I found a link to another celiac forum, and looks like they have the same arguments about Enterolab,going back to July 2006..wondering if he would publish and verify his research results? BTW the link to that forum was accessible from the same link...
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I have read most of these abstracts, and articles if available for the past 5-6 years. I was not implying that the USA doctors are in the forefront of research, but maintaining that research IS being done ,worldwide. In this country, medical research got clipped after Reagan changed the funding .....big Pharma picked it up as well as helping to fund the FDA...
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There are currently 14,469 articles about celiac disease on Pub Med. These articles are culled from all over the world, including the USA. They are listed most recent(the bulk of what's available is recent research) and span ALL specialties and subspecialties. Put PubMed on a Google search to find them if you've not been there. I just use celiac disease in...
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Precisely the point, Gentleheart......I believe it is very reasonable to go gluten-free AFTER all available conventional testing is negative, and there is nowhere else to turn when it appears you have celiac disease. Some people may never test with positive results, but still have it. Why not be gluten-free for 6 months to a year and then test for Enterolab...
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ARCHIVED Board Outage and Recovery
mamabear replied to psawyer's topic in Board/Forum Technical Help
Many, many thanks, Scott!! I was trying to do a "quick fix" on my computer when I couldn't connect!! Guess I know I'm hooked on the Forum for sure!!! -
Read all these posts since last night, and remembered something else Dr Fine said at the meeting in Memphis a few years ago. He gave statistics of the gene testing being positive of at least one of the genes(DQ2,DQ8 and several others) in nearly 90-95% of the population that he has tested. He was questioned as to whether he meant we were all basically celiac...
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Hey Momma Goose! Read your link, and I don't think the rebuttal comments worked. Original article still stands to me.... What did you think?
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Should I leave? I wouldn't dare say a thing like that I've never taken a survey, but I think I'm in the minority here as it is. I have a feeling it's the ones who are diagnosed that are looked down upon. I say very little for fear I'll offend someone as it is. neesee
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He did say he was having trouble being published. Must have been 3 years ago in Memphis.
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Finding a knowledgable celiac doctor is no small feat,and I agree with you there, Cinnamon. Paying cash money for a test that is based on unsupported medical findings in a doctor who REGULARLY published in the literature for 30 times until 2001.....and then says he has trouble getting published???? is a problem in my mind.
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No problem, Jerssy Angel ! I went back on Pub Med and he was consistently publishing in VERY mainstream medical literature from 1987-2001......30 articles total.
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DavidG Welcome to the forum.....you'll find a wide range of opinions here and a lot of good common sense advice. First of all, I commend you for 99% figuring out what was making you ill.....the mistake was in being gluten-free,DF for 5 months prior to your tests. A mistake for DIAGNOSTIC purposes, not a mistake for your health! Do you remember which blood...
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Welcome as well to LBD. Dr Kenneth Fine last published in 2001 in at least 2 journals. If you'll reference a search on Pub Med and put Fine KD in the search, you will pull up his publications. It apparently is not that he can't get published, but rather MAYBE on this particular research. I met him in Tennessee ~3 years ago when he came for a talk. He was...
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Sorry, 2 total family members including you......I'm so tired I'm not reading right!
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Since she was so ill informed in not wanting to authorize your sister's testing, and your sig shows 2 other family members with celiac....I would opt for the celiac center, and use the FP for generic problems, reminding her to write "gluten free" on all prescribed meds. Be sure the center is in your insurance plan though!! I doubt she will be able to monitor...
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ARCHIVED Any Body Had Shingles More Than Once?
mamabear posted a topic in Introduce Yourself / Share Stuff
I'm going through my second episode and was wondering if anyone else has had it more than once. I'm thinking of getting the vaccine, but ya'll know how celiacs make antibodies !!