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    If I Have Celiac Disease, Should I see a Dietitian?


    Jefferson Adams

    Celiac.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?


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    Photo: CC--WBURA 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.


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    Guest M.A. Finnell

    Posted

    Since this is an initial study no conclusion can be drawn. However it is important to recognize that dietitians until recently, were not very knowledgeable about celiac disease and the gluten-free diet. As in medical education the dietitians education taught until a few years ago that celiac disease was an extremely rare occurrence and a couple of small paragraphs were the only information most dietitian students were taught. It is still a condition which occurs less than many other conditions with which dietitians must treat , therefore they do not always have adequate information to help patients effectively. The gluten free diet is very specific and detailed, brand names, special precautions to avoid contamination with gluten, and misinformation complicate the diet. Dietitians need a great deal of experience to really help patients follow a gluten-free diet.

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    Guest Alan Salls

    Posted

    My 9 year old son's pedi-gastro doctor sent a dietitian out to see us on a house call - pretty great service, or so I thought up front. When she arrived, however, within five minutes of the conversation beginning, see made a comment to me that it was very obvious to her that I knew a lot more about celiac disease and a gluten-free diet than she did! As the conversation went on, I could see she was totally correct. She was a nice person who did her best to be helpful, but she couldn't answer a single question I had. (I'll admit, my questions weren't easy, they were things I was still confused or unsure about after reading several books on celiac disease and doing a considerable amount of research online concerning the disease and a gluten-free diet.) All in all, I think the visit was a total waste of time & money if the patient (or patients parent, in our case) has educated themselves even a little bit.

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    Guest mariebuc@comcast.net

    Posted

    I have gotten incorrect advice from some dietitians, who did not know that regular corn flakes and regular Rice Krispies, for example contained gluten, due to the malt flavoring.

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    Guest Julie

    Posted

    Interesting. I have to wonder how well educated the dietitians were on celiac disease. I saw one right after diagnosis, and I already knew way more than she did. It was not even remotely helpful. Those with celiac disease really have to own this disease and take control of their health. Be wise or suffer. Those are your options.

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    Guest Lonna

    Posted

    My 9 year old son's pedi-gastro doctor sent a dietitian out to see us on a house call - pretty great service, or so I thought up front. When she arrived, however, within five minutes of the conversation beginning, see made a comment to me that it was very obvious to her that I knew a lot more about celiac disease and a gluten-free diet than she did! As the conversation went on, I could see she was totally correct. She was a nice person who did her best to be helpful, but she couldn't answer a single question I had. (I'll admit, my questions weren't easy, they were things I was still confused or unsure about after reading several books on celiac disease and doing a considerable amount of research online concerning the disease and a gluten-free diet.) All in all, I think the visit was a total waste of time & money if the patient (or patients parent, in our case) has educated themselves even a little bit.

    In 2008, I was diagnosed with celiac disease... My G.I. doctor referred me to a dietitian. I too knew more about the disease and diet than the dietitian... She said to me, "if you had diabetes I would be able to answer your questions." Pretty sad... She apologized but I still was charged for her time.

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    Guest Lonna

    Posted

    Interesting. I have to wonder how well educated the dietitians were on celiac disease. I saw one right after diagnosis, and I already knew way more than she did. It was not even remotely helpful. Those with celiac disease really have to own this disease and take control of their health. Be wise or suffer. Those are your options.

    I totally agree...

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    Guest Clif Daniels

    Posted

    I have had diagnosed celiac disease for over four years now. in the initial months of diagnosis, I saw a dietitian twice, along with my wife. The single most important thing we got out of the visits was that our dietary research and cooking style were equal to or surpassed the advice from the dietitian. My GI has since supported my health exams by saying that I could probably write the book/conduct the workshop on celiac diet/cooking.

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    Sometimes these studies are a waste of time and money. If your dietitian is in expert in celiac, it's going to be helpful. If not, it will be detrimental. My dietitian is the leader of a celiac support group. I stayed sick until I found her and learned about cross contamination and hidden gluten.

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    I asked my doctor to see a dietitian to help me navigate the gluten-free diet. It was clear early on in the appointment that I knew significantly more than she did as she had only attended a poster session at a conference she had attended. I spent the entire session educating her and then paying a bill on my way out the door. I learned far more from reading on my own and a visit to my local health food store. As luck would have it, a worker had celiac disease and the store had a gluten-free room full of products. It was a very educational trip. I now share the information and tips to others I meet who have also had similar experiences. Perhaps a better study would be to look at ways to improve the medical professionals knowledge and how then it translates into the above study's markers.

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    Guest Cindy

    Posted

    I have not been to a dietitian. I just read labels and eat properly. I have done enough research on what I can and can not eat. I am getting better. After two years, I am no longer Lactose intolerant which tells me my villi are working. I no longer have diarrhea, so I must be doing everything right. I have only been glutened three times.

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    Guest Jacquie

    Posted

    We do have to own this condition and do our own research There is a lot of information available out there. Restaurants are beginning to carry a few gluten-free items, which make life seem somewhat normal

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    Guest Wendy

    Posted

    When I was diagnosed just over a year ago, my doctor told me he wanted me to see a dietitian. I called all of the dietitians within my insurance network and even a few outside of it and ALL of them said that they ONLY bill insurance for diabetes patients. Patients with celiac/gluten intolerance have to pay anywhere from $30 - $80 out of pocket for each 15 minutes. Then I'd have to turn around and hope my insurance reimbursed me for the visit. I ended up learning on my own, with this site as a huge help.

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    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

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    The research team included Y.‐H. Dong; Y. Jin; TN Tsacogianis; M He; PH Hsieh; and JJ Gagne. They are variously affiliated with the Division of Pharmacoepidemiology and Pharmacoeconomics, Department of Medicine, Brigham and Women's Hospital and Harvard Medical School in Boston, MA, USA; the Faculty of Pharmacy, School of Pharmaceutical Science at National Yang‐Ming University in Taipei, Taiwan; and the Department of Hepato‐Gastroenterology, Chi Mei Medical Center in Tainan, Taiwan.
    To get solid data on the issue, the team conducted a cohort study among ARB initiators in 5 US claims databases covering numerous health insurers. They used Cox regression models to estimate hazard ratios (HRs) and 95% confidence intervals (CIs) for enteropathy‐related outcomes, including celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy. In all, they found nearly two million eligible patients. 
    They then assessed those patients and compared the results for olmesartan initiators to initiators of other ARBs after propensity score (PS) matching. They found unadjusted incidence rates of 0.82, 1.41, 1.66 and 29.20 per 1,000 person‐years for celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy respectively. 
    After PS matching comparing olmesartan to other ARBs, hazard ratios were 1.21 (95% CI, 1.05‐1.40), 1.00 (95% CI, 0.88‐1.13), 1.22 (95% CI, 1.10‐1.36) and 1.04 (95% CI, 1.01‐1.07) for each outcome. Patients aged 65 years and older showed greater hazard ratios for celiac disease, as did patients receiving treatment for more than 1 year, and patients receiving higher cumulative olmesartan doses.
    This is the first comprehensive multi‐database study to document a higher rate of enteropathy in olmesartan initiators as compared to initiators of other ARBs, though absolute rates were low for both groups.
    Source:
    Alimentary Pharmacology & Therapeutics