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  • Jefferson Adams
    Jefferson Adams

    Why All the Hate for Celiac Disease Drug Treatments?

    Reviewed and edited by a celiac disease expert.

    Caption: Big pharma, and celiac drug treatments get a red light from many readers. Photo: CC--Kenny Louie

    Celiac.com 09/18/2015 - That old saw about death and taxes might need a bit of amending to include complaints about pharmaceutical companies working on celiac drug treatments.

    One interesting facet of our coverage of the development of various drugs to treat and/or cure celiac disease has been the regular presence of comments questioning the motives,and actions of the companies involved.

    It's funny, but no one complains that companies still make money selling aspirin, and that no one has cured a headache, and that there must be some conspiracy to profit off of those who suffer a headache.

    There's no doubt that there's money to be made producing drugs that treat disease. But, if a company can develop and produce a safe drug to protect celiacs against contamination, or to help reduce symptoms, what's wrong with that?

    Just like an aspirin, I can take it or not take it.

    In the old days, ten years ago or more, people with celiac disease generally suffered in silence, with scant gluten-free food choices, and little information. However, in just a decade, we've got a wealth of information, and multi-billion dollar gluten-free foods market and a number of companies developing drugs to treat or cure celiac disease.

    To me, that's a good thing. Still, there are naysayers. Here's a rundown of comments by readers who seem less than enthused about celiac drugs in development.

    Our recent article, An Update on Every Celiac Disease Drug Currently in Development included the comment:

    "Article's fine. Concept's disturbing. Eating a gluten-free diet is the free, already-proven cure for celiac and gluten-intolerance. They don't have to torture mice and likely other animals to find a 'cure' for something that there already is a cure for. I imagine there is $$ for the researchers here and $$ for the animal labs and $$ for the pharmaceuticals."

    Of our article entitled, How Close Are New Celiac Disease Treatments? one reader wrote:

    • "I would be very cautious about taking any of these until it was proven absolutely to have no side effects. There always are some and history has shown some to be deadly."

    Commenting on our article ALV003 Reduces Gluten Damage in Celiac Disease Patients, one reader commented:

    "I only want to know: how long until random internal organs begin to fail or malfunction as a result of yet another new mystery drug? I'd rather starve to death than be a guinea pig for big pharma again."

    Our article on NexVaxx, entitled Is a Vaccine for Celiac Disease Just Around the Corner? included the following comments:

    • "Totally agree with vhill seems like a ploy to poison people with GMO foods that come up with a supposed "'cure'. Eat healthy whole foods this is not a curse its a wake up call to be healthy if you didn't have celiac you'd probably be eating processed crap."
    • Balm wrote: "Thanks but no thanks. I'll remain a celiac and continue to eat healthy. While trying to fix one problem, some will end up with far worse problems."
    • Jonnys wrote: "Stupid idea! Just another way to make more money off of people."

    These are but a few of the largely positive comments we receive, and we hope you enjoyed them as much as we do.


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    I think distrust of the scientific community is markedly high among sufferers of CD—particularly those who continue to have symptoms or attendant disorders. Naturally, we see a lot of folks seeking solace and support on this site and its forum.

     

    To whit: lots of naturopathic remedies and suspicions about cross-reactivity, widespread candidiasis, etc. Generally spurious cures and conditions that are not well researched or proven. Yet these drug trials are trying to become as researched and proven as possible!

     

    Part of the distrust is perhaps due to the fact that treatment and/or resolution is not always achieved with GI doctors, and frustration ensues among patient and physician.

     

    If folks don't trust the drugs, they shouldn't use them. I hope the opinions expressed here don't hinder the research. However I suspect the ratio of "would try" to "no way" swings heavily to the former; we just see a skewed representation here among the poor folks still suffering.

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    This article misses the bigger question that I have. What if I forget to take my pills like people frequently do who have lactose intolerance? I frequently forget, or have run out.

     

    We are playing with something pretty dangerous here, and there are people who have silent damage who would not know.

     

    Cure it great, control it, big worries.

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    I think what gets me started yelling "Noooo!" is the suggestion that I might make myself sick by eating gluten so that they can test their treatment. I just can't be altruistic about that.

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    They can develop a drug for celiacs but when I listen to the side effects of the drugs for other immune disorders that can't be cured by diet, I find it unlikely that I would take a similar drug. Turning off your immune system, IMO, seems like a supremely bad idea... especially when celiac can be controlled by diet.

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    You should think about doing an article on why people have come to distrust pharmaceutical companies. Maybe that is part of the reason people are hesitant to embrace the search for a celiac drug cure. It's a shame that your article pokes fun at dissenting comments by saying "we hope you enjoyed them as much as we did". Celiecs should try to be understanding of where each other are coming from or we will become a divided group with less of a voice. I'd hope for more from the writers at celiac.com, who should try to exhibit a neutral stance to encourage conversation and make commenters with varied opinions feel welcome.

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    I do not need a drug to "cure" my celiac disease, I eat a gluten free diet and I am fine. However I would like to see our agriculture department make changes to the processing of our corn, wheat and I think a lot of people would feel better. But there is no money to be made for big business, therefore we have to bear the burden of many diseases that could be avoided.

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    Search for "America's Most Admired Lawbreaker" and read the series of articles on Huffington Post and all of the comments, so that you understand the greed and disregard for patients that exists in pharmaceutical corporations.

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    Although I'm not a fan of "the Donald", I have to complement him on speaking out about vaccine injury in the last debate. It is we who suffer the most autoimmunity who have the strongest and most sensitive and reactive immune systems, and thus are most vulnerable to gut and brain damage that results in autism spectrum disorders. Our genes are much older than the cultivation of wheat. Read Sayer Ji's essay "The Dark Side of Wheat". With Dr. Alessio Fasano's and other researchers' discoveries that no human has the enzymes to break gliadin, glutenin and other toxic grain proteins down into usable amino acids, that wheat germ agglutenin attaches to everyone's cartilage and crosses everyone's blood brain barrier, and that there are over 23,000 proteins in modern bread wheat, that it has the complete genome of three different grasses, resulting in a genome that is larger than our own, and Columbia University Celiac Center has discovered five more classes of proteins that celiacs react to, and Dr. Fine's research showing that only 1% of American's do not have a gluten sensitivity HLA-DQ gene, I think we need to be thinking about our role as the canaries in the coal mine, rather than following the USDA recommendations. Read the book "Death By Food Pyramid".

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    Why accuse Pharma companies of just trying to make money off celiacs? Yes, a gluten free diet is healthier by far, but look at the prices we have to pay for gluten free products. Why are the prices so high when the ingredients are rice flour and tapioca starch, both very inexpensive!!! Whose trying to make money and gouge people???

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    Thank you for bringing this up. Last I checked, if you live in America, you can choose to take the new drugs or not take them. I personally will keep my choice to myself and not try to influence others to think like me. I don't really have time to do that. My body, my choice--your body, your choice. Take care of yourself the way you see fit.

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    Guest William Narcowich

    Posted

    The negative comments must come from people who do not travel and probably prepare their food at home. I do not know of any restaurants that serve gluten free breakfasts, only one local restaurant that serves gluten free lunches, and a limited number where gluten free dinners are served. Mostly those are pizza or steak restaurants. Desserts other than vanilla ice cream are rare. It is impractical to find gluten-free restaurants on a long automobile trip.

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  • About Me

    Jefferson Adams is Celiac.com's senior writer and Digital Content Director. He earned his B.A. and M.F.A. at Arizona State University, and has authored more than 2,000 articles on celiac disease. His coursework includes studies in science, scientific methodology, biology, anatomy, medicine, logic, and advanced research. He previously served as SF Health News Examiner for Examiner.com, and devised health and medical content for Sharecare.com. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of the book "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

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