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Most People with Celiac Disease Open to Pharmaceutical Treatments

Celiac.com 10/17/2013 - A gluten-free diet is till the only treatment for celiac disease, but a number of companies are working on pharmaceutical treatments. However, very little information exists bout the level of interest among patients in using a medication to treat celiac disease.

Image: Wikimedia CommonsA research team set out to assess interest levels among patients in medical treatments for celiac disease. The research team included Christina A. Tennyson, Suzanne Simpson, Benjamin Lebwohl, Suzanne Lewis and Peter H. R. Green.

For their study, the researchers submitted a questionnaire to celiac disease patients and collected data on demographics, presentation, and interest in medication. The questionnaire included three validated celiac disease-specific instruments: Celiac Disease Associated Quality of Life, the Celiac Symptom Index, and the Celiac Dietary Adherence Test.

The team received 365 responses from people with biopsy-proven celiac disease. A total of 276 women and 170 men over 50 years of age responded to the study. Of these respondents, 154 experienced classic, diarrhea predominant celiac disease. In all 339 people responded to the question asking if they were interested in using a medication to treat celiac disease, 66% of whom indicated that they were interested.

The questionnaire responses broke down as follows:

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  • Older people showed the greatest interest, with 71% of people over 50 years of age saying they were interested, compared with 60% of people under 50 years of age, (p = 0.0415).
  • More men (78%) than women (62%) women were interested (p = 0.0083).
  • People who ate out frequently (76%) showed a greater interest than those who did not (58%), p = 0.0006).
  • People dissatisfied with their weight showed greater interest (73%) than those satisfied with their weight (51%), (p = 0.0003)
  • Lastly, those concerned with gluten-free diet costs (77%) showed greater interest than those not concerned about gluten-free diet costs (64%), (p = 0.0176).

Interestingly, the list of factors that did not seem to influence interest included length of time since diagnosis, education, presentation, and symptoms with gluten exposure.

Overall, celiacs with lower quality of life scores showed a higher interest in medication (CD-QOL 69.4 versus 80.1, p < 0.0001).

This survey shows a fairly strong interest among people with celiac disease in non-dietary, medical treatments.

Interest was highest among men, older individuals, frequent restaurant customers, individuals dissatisfied with their weight or concerned with the cost of a gluten-free diet, and those with a worse quality of life.

Just how well any drugs developed to treat celiac disease might be received will likely depend on many factors, including efficacy, side-effects, cost, ease of use, etc.

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5 Responses:

 
harparshantvir singh
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said this on
18 Oct 2013 11:53:55 PM PDT
Very well researched article. Indian herbal medicines have good results in celiac disease. Unfortunately people in western world don't seem to believe in this system of medicine.

 
Donnie
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said this on
21 Oct 2013 7:01:31 AM PDT
Drug approvals are often fast-tracked by the FDA, and we later find out that they are not safe or effective. And some drugs have caused severe side effects, including many deaths. A few have been pulled from the market, but most have not. I am not interested in trying any new drugs. After several years, the safety and effectiveness, or serious risks of the drug will be more apparent. Then I might consider trying it, if it proves to be safe.

 
laurie
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said this on
21 Oct 2013 1:54:51 PM PDT
I think it is very important to find a cure. I am finding out how difficult my teenage daughter's life has become (and my life as well, trying to feed her) and am worried when she eats at others' houses and out at restaurants. This disease definitely affects quality of life!

 
Carrie
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said this on
22 Oct 2013 5:22:23 AM PDT
We need to correct the issues with our food supply and we don't need another drug.

 
Kelly

said this on
11 Nov 2013 9:36:22 AM PDT
I would welcome a drug treatment, depending upon side effects. I would take it prophalactically and still eat as little gluten as possible. I have to dine out a lot and the occassional error is painful for me.




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You only need one positive on the celiac panel. I tested positive only to the DGP IgA and had a Marsh Stage IIIB intestinal damage. Good luck!

Welcome to the forum. First, you need to get copies of your celiac test to confirm you actually had it done and what the results were. Second, to confirm a diagnosis, you must obtain biopsies via an endoscopy. Were the doctors gastroenterologists? Third you need to research celiac disease. Yes, you can be asymptomatic, but could still have instestinal damage as the small intestine is vast. here is a good place to start: http://www.cureceliacdisease.org/screening/ You might think you are a silent celiac, but ever been anemic? Had your bones checked?

That's good to know about Texas Children's, unfortunately I don't believe they accept our insurance. Our former pediatrician joined with one of their medical groups and we had to find a new one due to insurance. I'll check out their site though.

9 months ago I went to my doctor for normal blood work. She called me to tell me everything looked great, but o yeah, my gluten sensitivity levels were extremely high. I should probably stop eating gluten since it looks like I have celiac. She hung up and I never heard from her again. I cut out gluten completely, even though I have never experienced one single symptom of celiac. 9 months later, I decided to reach out to another doctor to get a second opinion, as I experienced absolutely zero change on 9 months of strict gluten free diet. All this doctor did was request the results from the previous doctor, tell me it is confirmed I have celiac, and hung up the phone. This angers me tremendously on two counts. One, I have absolutely zero symptoms of celiac, and would NEVER know if I was "glutened". Two, the complete lack of information or support from both doctors is horrifying to me. And finally, I simply do not believe the diagnosis and as considering just starting to eat a normal diet again. I would never know the difference. I am really just venting because this situation upsets me so much, and I have suffered mentally and socially from going gluten free. Since I have absolutely zero symptoms, even if I was actually celiac, I highly doubt anything would ever come of it if I continued to eat gluten. I could just pretend I never heard from either terrible doctor and go on living my life. Someone has to have been in the same situation as me, right?

Texas children's hospital in the med center has a celiac center now. https://www.texaschildrens.org/departments/celiac-disease-clinic Good luck!