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I live in the Eastern NC area and am struggling to find a good Dr, gastroenterologist here in the area. I was was told yesterday by the FNP at my gastroenterologist’s office that it is “not true” that other autoimmune diseases can be present with Celiac. When I showed here the FAQ from the U of Chicago Celiac Disease Center, she replied, “well, they could be.” When I showed her the full Celiac panel I had done and paid for myself, she wanted to know why I did that. I again mentioned that the DGP IgG is the best indicator of Gluten in the diet (mine is negative). She again told me that wasn’t true and it is the TTG that show if Gluten is in the diet. (She only ran a TTG test back in July and it was a 5 so her assistant lectured me on “cheating” on the diet. Yes, I went to the nutritionist/dietician. I know what I am doing with my diet.) Again, this is contrary to the FAQ and answers on the U of Chicago CDC’s website and Mayo Clinic about TTg. I asked her about Ttg2 and TTg 6. She snorted. She was adamant that I have no idea of what I am talking about. She told me to stop “chasing it” and that she’d move my endoscopy up to this month. (Which she did.) I told her that was great, but that I cannot go another 3 months battling the chronic fatigue, joint pain, brain fog and basically feeling like crap. She kinda listened but my 10 minutes were up and off she went. (I do have an appointment with an Endocrinologist sent up because I do have TPO antibodies in my blood work.) She works with a gastroenterologist that others with Colitis and Chron’s praise, but I don’t think he is very good with Celiac. I am definitely thinking the FNP doesn’t do any continuing ed about Celiac. Anyone know of a good Gastroenterologist in the Eastern NC area?
Hello today I'm just back from my gp. Following over 7 years of bloating and looking like I'm pregnant my gp done a series of blood tests one including coeliac. The results came in that I'm not celiac but my iron levels olthough I'm on iron tablets is low. My iron always drops then I'm put on tablets for 3 months then go's back to normal then falls again. I'm also hypothyroid so really at times I just feel Bloo£@ awful. my doctor now wants me to refer me to a gastroenterologist to look into other testing becaus aparrently he can do more for me. He also said that I should go onto a gluten free diet but when I questioned him if this was wise incase it may effect any tests giving a false result he said it will be fine as he's already done the blood tests. He said it's good to go on it because the gastro will ask me to go gluten free at my first visit and this will saves me being sent home to do this and will buy me some time... im a bit confused what I should do now. Do I start a gluten free diet now like my gp has suggested or should I just wait until I've seen a gastroenterologist?? thanks in advance.xx
The following is excerpted from an article that was published in the American Celiac Society newsletter by Joseph A. Murray, MD of the Mayo Clinic Rochester, MN, who is a gastroenterologist who specializes in treating Celiac disease
Scott Adams posted an article in Celiac Disease Diagnosis, Testing & TreatmentThose patients for whom there is a high suspicion for celiac disease should have a small bowel biopsy which can be obtained by an experienced endoscopist in the distal duodendum. The best noninvasive tests available for screening for asymptomatic celiac disease are the specific serological tests. These are of several varieties: the anti-gliadin, anti-endomysial, or anti-reticulin antibodies. Our experience and the literature support the use as of endomysial antibody test as the single most specific and probably most sensitive for celiac disease. This test has now become available in specialty laboratories as well as in a small number of academic institutions. All of the tests should be done with the subjects on a normal gluten containing diet. A combination of endomysial and gliadin testing would seem to be the most sensitive as a screening method. A positive test is not, however, considered to be diagnostic and would usually require a small bowel biopsy for confirmation. A trial of dietary exclusion of gluten is *not* recommended as a diagnostic test without a prior abnormal biopsy. Because the body will recover when one goes gluten-free, the tests will then come up negative. Without a definitive test one may then stray from the diet, as one will feel well and was never sure that they had it in the first place. As for the two tests: The biopsy will look for flattened villi on the intestinal wall. After one goes gluten-free they will grow back. The blood antibodies are formed as a bodys reaction to the presence of the gluten. If no gluten, then no antibodies are present.
Celiac.com 03/29/2005 - The Childrens Digestive Health and Nutrition Foundation (CDHNF) with the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) announced today the findings from a survey of 200 pediatricians, family practitioners, and endocrinologists revealing the lack of understanding about celiac disease (celiac disease) in children. The survey was conducted by CDHNF in partnership with Epocrates, Inc., using the Epocrates Honors® Market Research Panel. The survey results supported the clear and urgent need to promote awareness of the individuals at risk, the associated conditions, the proper method of screening for celiac disease, and the necessary step of confirming the diagnosis with a small intestinal mucosal biopsy. Regarding the diagnosis of celiac disease, only 16% of respondents chose the most appropriate first line serological screening test for celiac disease, which is the IgA-anti-human tissue transglutaminase antibody. If the patient has positive serology for celiac disease, the majority of the survey respondents did not recognize the need to confirm the diagnosis with an intestinal biopsy before starting a gluten free diet. Up to 50% of individuals screened with an anti-gliadin antibody test may not have celiac disease at all, particularly if the person has atypical symptoms. The survey suggests that some people unnecessarily are recommended a gluten free diet, while others at risk are not being properly screened, identified and placed on a gluten free diet, said survey co-author and CDHNF Celiac Campaign Scientific Advisor Martha Dirks, MD, Sainte-Justine Hospital, University of Montreal, Canada. It is also of concern that the permanent nature of celiac disease is not emphasized by our physician respondents. Less than 65% of respondents recognized that a life-long adherence to a gluten free diet had to be maintained, added Dr. Dirks. In terms of recognizing symptoms, two thirds of the respondents felt that they were aware of at least three GI related symptoms of celiac disease and could correctly identify short stature and iron deficient anemia resistant to oral iron as manifestations of celiac disease. However, the survey also revealed there is a lack of awareness about associated conditions with celiac disease. For example, an average of 5% of people with Type I diabetes have celiac disease. However, less than 50% of respondents were aware of the association and almost 30% of respondents were against screening individuals with Type I diabetes. In addition, greater than 75% of respondents were unable to identify the condition NOT associated with celiac disease among a list of associated conditions. The level of knowledge of celiac disease is not what we like it to be. The survey illustrates that clear educational initiatives are needed to promote appropriate testing of persons at risk for celiac disease such as the recently released NASPGHAN Celiac Guidelines, NIH Consensus Conference, and our CDHNF grand rounds program, said survey co-author and CDHNF Celiac Campaign Scientific Advisor Stefano Guandalini, MD, University of Chicago. Dr. Guandalini added that an area definitely in need to be better known is that of screening for family members of patients with celiac disease. With an incidence higher than 5%, first-degree relatives must be screened for celiac disease, something that is only sporadically recommended. The survey indicates the need to provide medical professionals with as much information as possible about celiac disease. As a result, Epocrates has teamed up with CDHNF to distribute the CDHNFCD guidelines, gluten free diet guide and other educational resources to over 140,000 medical professionals via their DocAlert® messaging technology which will allow medical professionals to save the guidelines summary to their hand-held device and request additional information via e-mail. Epocrates continues to focus on patient care and safety, and our members look to us to provide the latest, most current information on drugs and diseases such as that provided through this campaign. We are pleased to support this effort to promote child health and wellness, said Kirk Loevner, Epocrates President and CEO. The NASPGHAN and CDHNF survey was conducted through the Epocrates Honors market research panel, which enables healthcare professionals to share their clinical expertise. Typically, this research consists of online surveys that take between 10 to 45 minutes to complete. Criteria to participate vary by study. In exchange for their participation, users receive an honorarium. Fifty-seven of the nations largest healthcare market research companies conduct hundreds of studies annually by accessing the industry-leading Epocrates Honors panel of more than 121,000 U.S. physicians and 254,000 allied healthcare professionals including physician assistants, nurse practitioners, RNs, dentists, pharmacists and others. About NASPGHAN and CDHNF The North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition, founded in 1972, is the only society in North America and the largest in the world, dedicated to serving the Pediatric Gastroenterology and nutrition communities. NASPGHAN was established to advance the understanding of the normal development and physiology of diseases of the gastrointestinal tract and liver in infants, children, and adolescents, and to foster the dissemination of this knowledge through scientific meetings, professional education, public education, and interaction with other organizations concerned with Pediatric Gastroenterology and nutrition. Visit our website at www.naspghan.org. The Childrens Digestive Health and Nutrition Foundation was established in 1998 by NASPGHAN. CDHNF is the leading physician source of information on pediatric gastrointestinal, liver and nutritional issues. CDHNF is dedicated to improving the care of infants, children and adolescents with digestive disorders by promoting advances in clinical care, research and education. In addition to the pediatric GERD education campaign, CDHNF also leads a campaign on Celiac Disease. Additional information on CDHNF and its campaigns can be found at www.cdhnf.org. About Epocrates, Inc. San Mateo, CA-based Epocrates is transforming the practice of medicine by providing innovative clinical tools at the point of care and deploying leading-edge technologies that enable communication. The company has built a clinical network connecting more than 1 in 4 U.S. physicians, students at every U.S. medical school and hundreds of thousands of other allied healthcare professionals with other healthcare stakeholders. Epocrates products have shown a positive impact on patient safety, health care efficiency and patient satisfaction.
This is not Medical advice: The biopsy determination of celiac disease requires demonstration of the abnormalities in the proximal small intestine. It is not possible to get such a biopsy going through the anus. The colonoscope does not reach that far. The biopsy instrument must go through the mouth. This is usually achieved with a upper endoscopy (AKA gastroscopy, EGD) A colonoscopy is frequently preformed for the investigation of diarrhea but does not and can not detect celiac disease. Joseph A. Murray, MD.