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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'm not quite sure I get it either. I haven't read all of the articles you mention, let alone the comments, but you can see some that are fairly indicative of some of the current anti-science bandwagons (anti-GMO, anti-pharmaceuticals, etc.). I think that's your answer right there.

     

    For my part, I'm happy folks are working on this and I hope they come up with something good. The gluten-free diet is a "cure" in one sense (as some of those comments mention), but it's not perfect.

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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.

    It should go without saying that Celiac.com does not agree with all comments posted, and the comments that are posted don't always represent Celiac.com's viewpoint. Comments on a given article can range greatly from one end of the spectrum to the opposite end of it, and we at Celiac.com do our best to point out issues that we have with some of these perspectives by replying to them, or in this case, writing an article about them.

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    I'm not quite sure I get it either. I haven't read all of the articles you mention, let alone the comments, but you can see some that are fairly indicative of some of the current anti-science bandwagons (anti-GMO, anti-pharmaceuticals, etc.). I think that's your answer right there.

     

    For my part, I'm happy folks are working on this and I hope they come up with something good. The gluten-free diet is a "cure" in one sense (as some of those comments mention), but it's not perfect.

    Amen! I'm ready to have a choice re treatment vs. diet alone for Celiac! Please keep us informed when treatment is available!

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    I don't have time to read through all comments any time you take a drug you run risk of drug reactions or side effects, but for many people a gluten-free diet is not enough, especially the traditional gluten-free diet to heal and remain healthy so I am all for looking and investigating a alternative treatment it's always up to individual to take or not to take it.

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    I for one am excited to see what they come up with. Eating gluten-free is not always enough for some of us with celiac. I still suffer from some ongoing digestive issues. I eat as healthy and clean as I can (organic, etc.), but I would be thrilled to see a cure for celiac or at least a supplement that would help protect against accidental cross-contamination when dining out. It feels good to have hope for the near future!

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    I love scientists who discover ways to improve my health! I also am willing to pay them money for their labor. Mostly, I don't mind eating a gluten free diet, but it is difficult to eat safely away from home. I have been "glutened" twice this year, once at my niece's wedding and once while eating out on our family vacation. In both cases, the culprit was hidden gluten. I can't wait for a pill that I can take when there is a danger of cross-contamination. And as others have said, no one has to use medicine that they don't want to.

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    EVERY drug on the market today has side effects. I take enough I so I should know. Aspirin can give ulcers. So... If there is a drug out there that can help or even cure me I am so there. And since we are not really even close to a drug that can help or cure my celiac I will not even worry about it right now. If they actually put something on the market then I will decide what to do.

     

    Of course there is money to made in this drug. I wish I could be the one making the money. What other reason would the pharma companies have than to find a cure so they can make lots and lots and lots of money. If I were them I would do the same exact thing. I hope they develop something sooner than later.

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    What depresses me is when people say "there's already a cure, just eat gluten free." Not for everyone! That works for some people, not others. In order to finally get healthy (which I am not yet after nearly three years), I am religiously gluten free to the point of wiping every item that enters the house from outside, eating absolutely no processed foods, walking nowhere near bakeries or flour aisles in grocery stores (yet I've still had multiple gltuenings in grocery stores), not eating in any restaurant that isn't entirely gluten free. I can no longer socialize with people in restaurants, allergies and sensitivities keep me from socializing in most homes (pets, smoke, any scented product). I view my life as on pause until a better treatment comes out. I'll be first in line, any price, I'll take the side effect risks, let me be a guinea pig and test it out!

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    Wow! I didn't expect to see so much negativity. I would love for my daughter to feel safe to go to sleep overs and not worry about getting sick. I'd love for her to sit in the school cafeteria and not be afraid to share her food with friends because if they touch her food with contaminated hands she will get sick. I would love for her to be able to go out on dates in a few years and not have only one restaurant she can go to. Of course I don't want the drugs to harm her, but I sure would love to have them reduce the fear, sadness, and stress she feels in her life right now. Celiac sucks for my middle school daughter. I'm not going to pretend this life style change has been fun for her or for any of us. I am grateful that now that she has been diagnosed she is finally growing, losing her baby teeth, and doing all the physical things her body hasn't been able to do previously. But emotionally this is hard. I don't want her life to always be hard.

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    I am most concerned about the celiac vaccine. If I am having an immune antibody response to certain proteins in grains, but doctors aren't really sure which ones because they don't test thoroughly, how do I know that I won't have an even greater reaction by getting this vaccine? A vaccine causes specific antibodies to be generated and sometimes an adjuvant is added to heighten the immune system's reactivity even more. Since when did someone with an autoimmune disease need their immune system to be even more reactive? Once you get a vaccine, you can't undo it, it's not like stopping a medication with bad side effects. There's no way I would volunteer for the vaccine trial. I am not an anti-vaxer. I work at a veterinary clinic and recommend vaccinations, but not every brand, kind, or disease for everyone. Products vary by manufacturer and not every vaccine is effective enough and/or needed. On the other hand, I would love to have an enzyme that I could take when I eat out. I got glutened from a dirty (with wheat soy sauce) hibachi grill last week when the cook said my order was gluten free. Very little gluten, just cross contamination. I'd like to be protected against that.

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    I would never take a pill to minimize symptoms. An aspirin doesn't make the source of the headache disappear, it merely masks the problem. As with all pharma, risks and side effects are rampant and this one has been rushed to market to fit the "illness of the day." It's delusional to expect that suddenly medical industry is concerned with this issue that has been misdiagnosed, misunderstood and misrepresented for years purely for altruistic reasons. Call naysayers cynical, but we are merely utilizing our past measure of proof.

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    I have celiac. I wouldn't purposely eat gluten. I can't eat anywhere but my own kitchen and it would be nice to spend time with my friends eating out. I would still choose gluten free but it is always cross contaminated . I am gfdfsf, and not better. I have been going to specialists for years. It is human nature for people with negative comments to be the ones who speak up. Complaint departments exist, not complimentary departments . The negative feedback does not reflect how most gluten-free people feel or there wouldn't be any possible drug developments . The feedback did appear to "shoot the messenger . " There are also people who don't like puppies and kittens. It is impossible to please everyone.

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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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