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Why All the Hate for Celiac Disease Drug Treatments?

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.

Photo: CC--Kenny LouieOne 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.

Celiac.com welcomes your comments below (registration is NOT required).



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32 Responses:

 
jayknight
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said this on
18 Sep 2015 2:47:49 PM PST
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.

 
Randy Klein
Rating: ratingfullratingfullratingfullratingemptyratingempty Unrated
said this on
21 Sep 2015 5:19:46 AM PST
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.

 
Fran
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said this on
21 Sep 2015 5:37:20 AM PST
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.

 
K2
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said this on
21 Sep 2015 5:59:20 AM PST
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.

 
Mar
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said this on
21 Sep 2015 6:01:47 AM PST
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.

 
admin
( Author)
said this on
21 Sep 2015 11:57:01 AM PST
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.

 
Peggy
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said this on
21 Sep 2015 6:28:22 AM PST
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.

 
Michael
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said this on
21 Sep 2015 7:22:26 AM PST
Read Dr. Brownstein's article about a new diabetes drug on his blog, and you'll start to understand how scientists lie about pharmaceuticals.

 
Michael
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said this on
21 Sep 2015 7:29:54 AM PST
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.

 
Michael
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said this on
21 Sep 2015 7:48:32 AM PST
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".

 
Deb S.
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said this on
21 Sep 2015 8:34:37 AM PST
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???

 
PamLevy
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said this on
30 Sep 2015 2:56:05 PM PST
NO JOKE so expensive. I pray daily for meds for this disease, I HATE having to be GF. Your diet controls your entire life.

 
Kelvin S.
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said this on
12 Oct 2015 7:46:19 AM PST
Food can be inexpensive when it can be mass-produced. Ensuring no cross-contamination, creating new recipes that look and taste good while using unusual ingredients, shipping small quantities, and other specialty issues all raise prices. (Some of the GF items we buy come from Australia; quinoa typically comes from the backcountry Andes...) We have a free-market system; if products are being sold at prices that provide excessive profits, there's nothing to prevent another producer from stepping in and selling at better prices. But don't forget that Americans overall spend much less for food than people almost anywhere else in the world, so part of the issue is simply the difference between world-typical prices and the discounts offered by high volume food processing. (Whether the latter is healthy for anyone, celiac or not, is a separate issue.)

 
Julie
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said this on
21 Sep 2015 9:13:28 AM PST
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.

 
William Narcowich
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said this on
21 Sep 2015 9:45:13 AM PST
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 GF restaurants on a long automobile trip.

 
Joe
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said this on
21 Sep 2015 10:58:28 AM PST
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.

 
Mary
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said this on
21 Sep 2015 1:20:31 PM PST
Amen! I'm ready to have a choice re treatment vs. diet alone for Celiac! Please keep us informed when treatment is available!

 
Katrina
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said this on
21 Sep 2015 1:33:39 PM PST
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 GF diet is not enough, especially the traditional GF 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.

 
Laura
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said this on
21 Sep 2015 1:39:41 PM PST
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!

 
Amy Sutherland
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said this on
21 Sep 2015 2:19:00 PM PST
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.

 
Fern Walter
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said this on
21 Sep 2015 2:28:43 PM PST
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.

 
Celiac
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said this on
21 Sep 2015 6:02:59 PM PST
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!

 
Kristin
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said this on
21 Sep 2015 6:47:05 PM PST
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.

 
Amy
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said this on
21 Sep 2015 11:29:36 PM PST
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.

 
T Dee
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said this on
22 Sep 2015 4:15:52 AM PST
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.

 
Stephanie
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said this on
22 Sep 2015 6:38:45 AM PST
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 GF 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.

 
Linda
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said this on
22 Sep 2015 11:27:41 AM PST
My son is one of the "super sensitives" He cannot tolerate even the smallest amount of gluten without getting sick. He follows a very strict gluten free diet and is OK with that. Its the accidental glutening that makes life difficult for him. Unless a restaurant is 100% dedicated gluten free, he won't dine out. (there are not in the city where he lives) He pretty much cooks and prepares everything he eats. But he travels a good amount for work and this is always a problem. He is not looking to take a pill and be able to eat wheat products. All he wants is to be able to go out and maybe once in a while, order off a gluten free menu and not have to worry about cross contamination. If there is a medication that can do that for him, that would be wonderful.

 
Peggy
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said this on
22 Sep 2015 2:08:03 PM PST
Someone else hit the nail on the head exactly. I'm not sick. I don't need a cure. Eating gluten free is a way of life, not something that needs to be fixed. Who wants to "fix" me and why? I strongly suspect they don't want to "fix" me for my own good but for the good of food companies and restaurants who will have justification to stop worry about cross contamination. Why would I risk my body by taking unnatural drugs cooked up a lab? Every so called wonder cure out there has terrible side effects. Why would I risk that when I don't have to?

 
Rebecca
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said this on
22 Sep 2015 3:32:05 PM PST
I think some of the strong opinions are due to the distrust of Big Pharm as there are some very dangerous drugs on the market with many unknown side effects, but for me what I love about the Gluten Free "movement" (for lack of a better word) is that it has demanded healthy change in our foods and even more awareness to get back to whole foods. I for one have learned so much from this journey I am on for my daughter about the food we eat. I guess I have some fear that if there was a pill available the doctor would have just put my daughter on it like they have done for her Hashimoto's and we would not have been forced to try a GFD. Being able to treat her celiac thru diet has been empowering, I am grateful she doesn't need to take a drug. That being said I am grateful for all research in the autoimmune area and also look forward to the day that she can have a relatively safe drug available, if needed, when traveling or at a big event when it is not easy to control what she eats.

 
Bob Smith
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said this on
24 Sep 2015 9:53:18 PM PST
People in general are stupid and naive. They believe crap they read on Facebook and then they spout off like they know what they are talking about.
Bring on the cure. I'm HAPPY to pay for it. I hate being a celiac and hate having to eat gluten free. I love pizza and I love beer and no not that GF crap. I hate that every time we go out to eat several of us "can't just order"...I really hate it all. I want to eat what I want to eat and not what I have to eat. So please bring on a cure.. if you don't want to take meds or vaccines or whatever they have then fine...let others get it if they want it.

 
PamLevy
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said this on
30 Sep 2015 2:51:43 PM PST
I couldn't agree more. I HATE being GF. I dream about real Pizza, Pasta and cinnamon rolls. ARE YOU KIDDING ME???

 
PamLevy
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said this on
30 Sep 2015 2:49:47 PM PST
Who in the world would complain about a medicine for this disease? I hate HAVING to be GF and I NEVER Cheat. I don't think the GF foods are nearly as tasty, satisfying and it has really hampered my lifestyle. I will jump for joy the day a med is offered to me!!!! Are you kidding me? I am looking for a study I can be in to try a med.




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