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Found 5 results

  1. Hi everyone! Brand new here !! Still trying to figure out how this all works So, a few months ago I started feeling absolutely terrible. Muscle Pains, palpitations and tingling sensations, as well skin sensitivity and rosacea. I did not notice at the time that it was related to food until I had a few "poisonings" that I thought came from shellfish. I have always suffered from severe C but never D. Anyways.. I was incredibly sick for about 3 months and I got tested for everything under the sun: even lyme disease, toxoplasmosis etc. Then I got a brain scan that showed I had T2 non specific white matter lesions that could be consistent with MS ( which of course scared me A LOT) These were seen by 3 neurologists who thankfully ruled out MS, but also did not give me a reason for them. Interestingly enough, I got a 23 and me test kit as a gift for Christmas, and when it came back, it showed I had a variant in the HLA-DQA1 which increased my chances of developing celiac. When I saw that it was like a light bulb came on immediately !! . I just knew that it had to be related to gluten at that point. So, I went to at least 3 doctors who completely dismissed me ( one said those tests were not accurate at all , another said my symptoms were psycosomatic and refered me to a psychiatrist.. ) until finally I had one doctor send me for testing. Upon finding my ttg A elevated and the EMA positive, she refered me to a gastroenterologist to get more tests. This gastroenterologist sees my husband for his Chron's Disease and he is very good for that, but when I showed him my ttgA result and the EMA, he said he did not believe I had Celiac because I did not have D, only C, which put his celiac's expertise in question IMHO. ANyways, he repeated all the tests, and added more including genetic testing. Below are the results. He now says he is sure I have celiac but won't give me the diagnosis unless I get a biopsy to confirm. I asked, "so what else could the tests mean?" and he said, " I'm sure you have celiac, but I need the bipsy before I impose this lifelong diet on you " My insurance is not very good and it will cost me over $1000 to have this done, which is steep for me at the moment. I know that it is a personal choice and I am not looking for any medical advice, but I want to know people's opinions on wether you guys think it is really necessary. All my tests seem to point to Celiac's direction and makes me wonder if maybe I should look for another doctor, or just start on the gluten-free diet, ( I've tried to lower my gluten consumption but still kept eating it to prepare for the endoscopy" ) Or wether I should get it done to establish a baseline. I worry that the exam will be a false positve, seeing how unacurate they can be, and also lowering gluten could maybe alter it ? Finally, if anyone knows a Dr in the Miami / Fort Lauderdale area that specializes in Celiac I would reallly appreciate it Sooo sorry this got soo long, but i appreciate any advice TEST RESULTS: TISSUE TRANSGLUTAMINASE IgA - 9 Ref: <4 TISSUE TRANSGLUTAMINASE IgG - 15 Ref: <6 GLIADIN (DEAMIDATED) IgA - 21 Ref: <20 GLIADIN (DEAMIDATED) IgG - 38 Ref: <20 ENDOMYSIAL ANTIBODY SCR AMD (IGA) W/REFL TO TITER Positive ENDOMYSIAL ANTIBODY AMD TITER - 1:5 Ref: <1:5 IMMUNOGLOBULIN A: 135 Ref: 81-463 HLA TYPING FOR CELAIC DISEASE: •HLA DQ2: POSITIVE •HLA DQ8: NEGATIVE •HLA VARIANTS DETECTED: HLA DQA1 : 02 HLA DQA1 : 05 HLA DQB1 : 0202 HLA DQB1 : 0301
  2. Celiac.com 02/15/2012 - At the American College of Gastroenterology (ACG) 2011 Annual Scientific Meeting held in Washington, DC, Caris Diagnostics, a leader in anatomic pathology services, presented 15 abstracts highlighting new findings that reflect and expand Caris' commitment to gastrointestinal disease research. Highlights from the presentation include two studies, in particular. The first study, "High Prevalence of Celiac Disease in Women With Young Onset Collagenous Colitis," found that young women with collagenous colitis are eight times more likely than the general population to have celiac disease. That study was authored by Ahmed Bedeir, MD, Bhaskar Ganguly, and Mukunda Ray, MD, PhD. As Dr. Bedeir's finding is gleaned from the largest series of young patients with collagenous colitis ever reported, the study team recommends that women age 40 or younger who have a diagnosis of collagenous colitis also undergo an EGD with duodenal biopsies to exclude concurrent celiac disease. The second study, "Seasonal Patterns in Eosinophilic Esophagitis: An Analysis by Month of Diagnosis and Month of Birth," showed that, contrary to previous suggestions derived from smaller series, there was no evidence of monthly or seasonal variation even within known regions with diverse climates among our 10,000 patients with eosinophilic esophagitis. That study was authored by Jennifer M. Hurrell, DO, Amnon Sonnenberg, MD, and Robert M. Genta, MD, FACG. Regarding Caris' commitment to gastrointestinal disease research, Richard H. Lash, MD, Chief Medical Officer for Caris says that the "establishment of the Caris Research Institute as a structure for promoting and carrying out research has again generated a strong presence at the annual ACG meeting in Washington, D.C," adding that Caris remains "committed to leveraging our tremendous database and academic talent to answer important questions in the field of gastroenterology and are honored to have the opportunity to present our findings at ACG 2011." Source: http://www.carislifesciences.com/news/caris-diagnostics-presents-research-at-2011-annual-meeting-of-the-american-college-of-gastroenterology/
  3. National Institute of Diabetes and Digestive and Kidney Diseases (N I D D K) of the National Institutes of Health (N I H) - Your Digestive System and How It Works: http://www.niddk.nih.gov/health/digest/pubs/digesyst/newdiges.htm The Endoscopy Center of Pensacola, FL contains lectures by their gastroenterologists, gastro links, patient education links and brochures. They will soon be adding videos of endoscopies and colonoscopies: http://www.endo-world.com/ North American Society of Pediatric Gastroenterology and Nutrition, better known as NASPGN: http://www.naspgn.org/ Nutramed (Stephen J. Gislason, M.D.) has a comprehensive Web site: http://www.nutramed.com/ Don Wiss has created a very comprehensive collection of sites for those who want to know more about IBS: http://www.panix.com/~ibs/ Here is another site on IBS: http://www.ibsgroup.org/ Crohns & Colitis Web Page: http://www.ccfa.org/ Celiac Disease and Food Allergy Screening Laboratories: Enterolab https://www.enterolab.com/Home.htm IMMCO Diagnostics, Inc. http://www.immco.com Genova Diagnostics (GSDL): http://www.gdx.net/home/assessments/celiac/ Specialty Labs http://www.specialtylabs.com The Great Plains Laboratory: http://www.greatplainslaboratory.com/home.htm Immuno Laboratories: http://www.immunolabs.com Meridian Valley Laboratory: http://www.meridianvalleylab.com/allergy_dept.html Sage Medical Laboratory http://www.foodallergytest.com US BioTek http://www.usbiotek.com
  4. Celiac that do not remain on a gluten-free diet can develop Refractory Sprue. Refractory Sprue and Collagenous Sprue patients who initially respond to a gluten-free diet many subsequently relapse despite maintaining their diet. Such patients are then refractory to further dietary therapy. In contrast, others are refractory to dietary therapy from its inception and, assuming they are truly on a gluten-free diet, may not have celiac disease; these patients are said to have unclassified Sprue. Some refractory patients with celiac disease, typical or atypical, respond to treatment with corticosteroids or other immunosuppressive drugs. In others, there is no response and malabsorption may be progressive. Collagenous Sprue is characterized by the development of a thick band of collagen-like material directly under the intestinal epithelial cells and has been regarded by some as a separate entity from celiac disease. However, subepithelial collagen deposition has been noted in up to 36% of patients with classic Celiac Disease and in Tropical Sprue. Although individuals with large amounts of subepithelial collagen may be refractory to therapy, the presence of collagen does not , a riori, preclude a successful response to a gluten-free diet. Collagenous colitis accompanying celiac disease also has been observed and would be considered in the diagnosis of diarrhea occurring in celiac disease patients on a gluten-free diet.
  5. The Journal of Pediatric Gastroenterology and Nutrition (1996;22:414) published the abstracts of the forthcoming ESPGAN Meeting (June 4-8, 1996 in Munich, Germany). Troncone et al will present their work: Oat prolamines activate mucosal immune response in the in vitro cultured treated coeliac mucosa The conclusion is that oat prolamines are able to activate the T-cell mediated mucosal immune response in the coeliac jejunum, and represent a warning against the inclusion of oats in the diet of coeliac patients.
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