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TexasJen posted a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)Hi all- just an update - I went to the UCLA Celiac center last week to see their dietitian, Nancee Jaffe. Some background - I live in Texas and was diagnosed in 2016. I have seen 2 dietitians here who really didn't know that much about celiac. They have not been particularly helpful in providing evidenced based recommendations for the practicalities of a gluten free diet. Since I was going to be in the area, I decided to make the appointment. (I find this sight helpful but in general, I am frustrated by conflicting advice, information that I find on the internet) I have to say, IT WAS GREAT! She has celiac herself for 10 years. She is down to earth, practical, and talks to the specialists at UCLA regularly to come up with a treatment plan for their patients. The advice she gave was solid advice. She provided evidence for a lot of her advice and she had reasonable well-thought out answers to some of the tough questions (how to eat out safely, how to travel, what to do about oats in food, etc) I would definitely recommend her to anyone who has ongoing questions about a gluten free life-style, refractory celiac, new diagnosis.
I just found a really old thread about Seattle having some practitioners with celiac disease knowledge. Who is still in Seattle that would be recommended? Or more preferably closer to Spokane if at all possible? I live in MT and was told by my kids' pedi that they don't need to be tested, there's no symptoms. And the GI office I went to for a second opinion (due to a disagreement with my spouse) just told me there was no additional testing etc. needing to be done. Thanks for your time!
Jefferson Adams posted an article in Celiac Disease Diagnosis, Testing & TreatmentCeliac.com 07/12/2013 - Most doctors and clinicians recommend dietitians for their patients with celiac disease. In fact, the official stance of celiac disease experts is that doctors should recommend a dietitian for every patient with celiac disease. But, do dietitians actually improve the treatment outcomes of celiac disease? A team of researchers recently set out to answer that question by surveying patients with celiac disease to determine if dietitian use is associated with quality of life, symptom severity, or gluten-free diet adherence. The research team included Sri Hari Mahadev, Suzanne Simpson, Benjamin Lebwohl, Suzanne K. Lewis, Christina A. Tennyson and Peter H. R. Green. They are affiliated with the Celiac Disease Center at the Columbia University College of Physicians and Surgeons in New York, USA. The survey relied on three proven celiac disease-specific elements: the celiac disease quality of life (celiac disease-QOL), celiac disease symptom index (CSI) and celiac disease adherence test (CDAT). The survey group included four hundred and thirteen patients with biopsy-proven celiac disease. The group was 77% female, with an average BMI of 24.1. Nearly 80 percent of patients (326), had seen a dietitian, but almost 40 percent of them (161) had only seen a dietitian once. Age, sex, and education level were not factors in dietitian use; nor was BMI (24.6 vs. 24.0, p = 0.45). On multivariate analysis, adjusting for age gender, education, duration of disease, and body mass index, dietitian use did not change celiac disease-QOL, CSI, or celiac diseaseAT scores. Furthermore, patients who worked with a dietitian did not report any change in symptom severity, dietary adherence, or quality of life. The survey also showed that delay in celiac diagnosis usually results in poorer outcomes overall. So, in this study, patients with celiac disease who saw a dietitian did no better or worse than those who did not see a dietitian? That mean that doctors just can't say whether people with celiac disease should use, or avoid dietitians. Because this was a preliminary study with several limitations, researchers need to do a much more comprehensive analysis to more accurately determine the benefits and cost-effectiveness of dietitian-referral for patients with celiac disease. Source: Nutrients 2013, 5(5), 1585-1594; doi:10.3390/nu5051585