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

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?

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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12 Responses:

 
M.A. Finnell
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said this on
15 Jul 2013 7:47:02 AM PST
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 GF diet.

 
Alan Salls
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said this on
15 Jul 2013 11:16:00 AM PST
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.

 
Lonna
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said this on
15 Jul 2013 5:19:03 PM PST
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.

 
mariebuc@comcast.net
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said this on
15 Jul 2013 12:19:08 PM PST
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.

 
Julie
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said this on
15 Jul 2013 12:34:25 PM PST
Interesting. I have to wonder how well educated the dietitians were on CD. 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.

 
Lonna
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said this on
15 Jul 2013 5:22:47 PM PST
I totally agree...

 
Clif Daniels
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said this on
15 Jul 2013 6:33:13 PM PST
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.

 
Sue
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said this on
16 Jul 2013 12:58:31 AM PST
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.

 
Lisa
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said this on
16 Jul 2013 5:26:18 AM PST
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.

 
Cindy
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said this on
16 Jul 2013 9:13:56 AM PST
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.

 
Jacquie
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said this on
16 Jul 2013 3:40:35 PM PST
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

 
Wendy
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said this on
22 Jul 2013 1:46:16 PM PST
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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