Big News for Celiac Treatment Comes in a Small Package

a photograh of a brown mouse
Photograph by George Shuklin

Normally when we do posts on scientific studies concerning celiac disease and gluten intolerance, we have to put in a lot of “maybe”s and “could”s and “however”s into the post. But a new study, published in the latest edition of the journal Nature, can be approached with a little less caution. I would even argue that it’s one of the most promising studies we’ve seen in a long time. Plus, the study was done with a control group of mice, which meant I got to spend half an hour looking at adorable pictures of mice on the internet, so that was a bonus.

Since I’d hate to leave you in suspense, I’m going to jump ahead to the implications of the study before going into all the polysyllabic details: a huge step has been made toward developing a treatment that could not only manage symptoms of severe celiac disease, but could potentially prevent the development of the disease in high-risk individuals.

Excited yet?

Now let’s start from the beginning.

So, humans have an inflammatory protein called interleukin-15, or IL-15 for short. IL-15’s job is largely to regulate T-cells, and has been shown to increase the anti-tumor immunity of some specific kinds of T-cells, which is good. What’s not so good is that an excess of IL-15 has already been implicated in multiple inflammatory diseases such as rheumatoid arthritis. We’ve known about IL-15’s dark side for awhile now, and medications that block IL-15 are currently being developed to treat conditions like RA.

You can probably see where this is heading. Since celiac disease is an inflammatory disease as well, a team set out to see if blocking IL-15 could be effective in treating celiac disease (click the link for Web MD’s write-up of the study). They first genetically altered a group of mice to give them celiac disease (anyone up for an animal rights debate?), and then treated the mice by blocking their IL-15. The results? The disease’s symptoms were reversed, and the mice were once again able to eat gluten with no detrimental side effects (“That’s great and all, but I prefer cheese anyway.” -The mice).

Gerald Mullin, MD, an associate professor of medicine at Johns Hopkins, says the study holds promise. “IL-15 may be a major player in driving the inflammatory response in celiac disease, and if we block it, you can tolerate gluten,” says Mullin. “A drug that blocks IL-15 may be most beneficial in people with really aggressive disease that doesn’t respond to conventional dietary measures,” he adds.

Most beneficial to people suffering the most? I’m sold. But hold your applause for a second while we hear the requisite “However….”

This one comes courtesy of Richard Desi, MD, a gastroenterologist at the Melissa L. Posner Institute for Digestive Health and Liver Disease at Mercy Medical Center in Baltimore. “This may not be it for everybody,” he says, “but maybe it can help some people. We are starting to understand celiac disease a lot more and diagnose it a lot more. The hope is that we will be able to come up with a treatment that doesn’t just involve a gluten-free diet.”

As “however”s go, that one is pretty optimistic. One of the most interesting implications of the study is that a treatment that blocks IL-15 could not only be effective in treating celiac disease, but in preventing it in high-risk folks as well (people with family histories of celiac, for example). The article didn’t mention if there were any potentially negative effects of blocking IL-15, which I’m taking to mean that the risks aren’t high enough to mention (feel free to burst my bubble, though). While blocking IL-15 might not do much for someone with a gluten allergy or a gluten intolerance, the potential here is astounding.

An interesting side-note: the study also found that retinoic acid, a vitamin-A derivative found in acne treatments such as Retin-A and Accutane, may be another culprit in celiac disease. That’s because retinoic acid acts as IL-15’s little sidekick, fueling the production of the protein and further exacerbating celiac symptoms. One scientist actually says that vitamin A may not be a great idea for celiac patients, and that even topical ointments containing retinoic acid can potentially enter the bloodstream and cause problems. Any celiacs who use such products may want to bring this issue with up with an understanding physician, gastro, or holistic doctor if you’re concerned.

So what do we think? Excited? Super excited? Annoyed that IL-15 blocking won’t treat your gluten intolerance? Have a 10-page treatise on rights for laboratory animals? Have at it in the comments!

Edit:A couple of very helpful commenters pointed out that there was a preceding study, published in the Proceedings of the National Academy of Science, that found that blocking IL-15 led to a reversal of intestinal damage in mice. The study was conducted at the Tokoyo Metropolitan Instititue of Medical Science by a Yokoyama S, Watanabe N, Sato N, Perera PY, Filkoski L, Tanaka T, Miyasaka M, Waldmann TA, Hiroi T, Perera LP. The full study is available here. The study in Nature was about the role of Vitamin A in the function of IL-15. Sorry for any confusion!

Someone else also commented that I neglected to credit the research team for the Nature study. That one took place at the University of Chicago, and the team was led by Dr. Bana Jahbri. Again, I’m sorry for not giving you guys the full picture, and thanks to all the readers who helped me out!

51 thoughts on “Big News for Celiac Treatment Comes in a Small Package”

  1. So I wonder, if IL-15 is beneficial in preventing tumors and you block it, will that mean an increase in tumors?

    And regarding vitamin-A… So we should avoid vitamin A? No multiple vitamin in the morning, no foods containing vitamin A? That seems like it could create a host of other problems. Or is it just too much vitamin A, and if so, how much is too much?

  2. Hey, I’m all for any steps forward to finding a cure! Any news is good news! This one small step will lead to another and another. I do hope there will be a cure for my kids generation.


  3. I don’t have easy access to the full journal article at home, but I’m looking forward to grabbing it later. It would be nice if this leads to good results in humans. Unfortunately, this is often not the case.

    A general suggestion though, is to put the DOI number in any references to papers so that any posts on pre-publication results can be looked up later, and it reduces the risk of expiring/changing links.

  4. So Western medicine hopes to have a drug to treat celiac disease? What a surprise! There is a perfectly good treatment available now with no side effects ~ a gluten free diet. Does big pharma want to then treat the 50+% of people with gluten antibodies even though they exhibit no overt symptoms of gluten intolerance? I think that would be a big yes. Big pharma’s goal is to create drugs that a large number of people will take FOREVER. This would seem to be that drug, and never mind those pesky side effects which this type of drug seems to be a prime candidate for. I am a diagnosed celiac of some 25 years and quit eating fake bread and cookies years ago. Eat what humans were designed by evolution to eat ~ no grains, legumes or liquid vegetable oils nor sugar anything and be healthy without a drug to mask the effect of a dangerous food.

  5. So what are the side effects from taking the medication that blocks the IL-15? It seems that the meds that are currently available for rheumatoid arthritis have some nasty side effects.

  6. Sounds promising to me. I’d love to be a test subject! I do feel for those with allergies and intolerance issues but it is a great step for those of us with Celiac. Sadly I am also allergic to everything containing gluten. But at least my body wouldn’t react as badly as it does now.

    tjaragaki I’m thinking maybe excess Vitamin A isn’t good for us. But I guess we’ll have to see what the experts say.

  7. Anybody looking at the ‘why’? Why are the T cells overstimulated? Why is there an increase in the production of IL-15?

  8. It appeared in the PNAS last September not in the Nature. The February Nature paper is about the role of vitamin A as a needed coplayer for Il-15 action.
    Here is the abstract of the mice study from PNAS. The words of caution about potential new therapies can never be exaggerated.

    Proc Natl Acad Sci U S A. 2009 Sep 15;106(37):15849-54. Epub 2009 Sep 1.
    Antibody-mediated blockade of IL-15 reverses the autoimmune intestinal damage in transgenic mice that overexpress IL-15 in enterocytes.
    Yokoyama S, Watanabe N, Sato N, Perera PY, Filkoski L, Tanaka T, Miyasaka M, Waldmann TA, Hiroi T, Perera LP.

    Department of Allergy and Immunology, Tokyo Metropolitan Institute of Medical Science, Tokyo, 113-8613, Japan.
    Celiac disease (CD) is an autoimmune inflammatory disease with a relatively high prevalence especially in the western hemisphere. A strong genetic component is involved in the pathogenesis of CD with virtually all individuals that develop the disease carrying HLA-DQ alleles that encode specific HLA-DQ2 or HLA-DQ8 heterodimers. Consumption of cereals rich in gluten triggers a chronic intestinal inflammation in genetically susceptible individuals leading to the development of CD. Emerging evidence has implicated a central role for IL-15 in the orchestration and perpetuation of inflammation and tissue destruction in CD. Therefore, IL-15 represents an attractive target for development of new therapies for CD. Transgenic mice that express human IL-15 specifically in enterocytes (T3(b)-hIL-15 Tg mice) develop villous atrophy and severe duodeno-jejunal inflammation with massive accumulation of NK-like CD8(+) lymphocytes in the affected mucosa. We used these mice to demonstrate that blockade of IL-15 signaling with an antibody (TM-beta1) that binds to murine IL-2/IL-15Rbeta (CD122) leads to a reversal of the autoimmune intestinal damage. The present study, along with work of others, provides the rationale to explore IL-15 blockade as a test of the hypothesis that uncontrolled expression of IL-15 is critical in the pathogenesis and maintenance of refractory CD.

  9. Reversing intestinal damage is more than reversing the symptoms of celiac disease. It should be investigated for that purpose alone. I am told that the intestinal damage may lead to cancer.

  10. You should also credit the researchers. This study took place at the University of Chicago Celiac Disease Center by Dr. Bana Jahbri.

  11. The title of the link to this article suggests that there may be a cure for Celiac Disease in the form of this pharmaceutical; that is very misleading.
    This is yet another example of misdirected pharmacology. We understand that IL-15 regulates immune response in certain ways, some of them very positive, some not so positive. We also know that chronic inflammation in any part of the body is a precursor to cancer. However, modulating the action of IL-15 pharmacologically is effectively a double-edged sword: it’s going to have some positive effects and some negative effects. The negative effects could be very detrimental (inhibiting the anti-tumor activities of IL-15 with T-cells). In my mind, it’s certainly not worth the risk.

    Our focus needs to shift to enhancing options for those who cannot consume gluten: more convenience, more variety, more imagination, more passion. Why should any Celiac (and I am one) feel that he/she needs to continue to try to conform to the (largely unhealthy) dietary habits of the masses? That is simply ridiculous. The vast majority of gluten-containing foods are poor dietary choices in the first place. Wheat is a very poor choice as a staple food. It is only a staple food because it’s easy to grow, relatively pest-resistant, and government-subsidized.

    In general, we need to stop focusing on pharmaceuticals as solutions for our own lack of imagination, creativity, and ownership of our own health. We must ask for what we really need: more options based on nutrient-rich, whole foods.

  12. Thank you for sharing this optimistic news.
    To those who like to complain about big pharma, the gluten free diet isn’t 100% if you ever plan to leave your own house. It is worse for a child who wouldn’t eat the things an adult can eat and doesn’t understand why not.Try feeding Quinoa to a 6 year old. It’s not going to happen. I can’t send him to social events when I know a restaurant has nothing he can eat there. I will continue to pray for a cure so my son can be a part of what everyone else is enjoying, and not always an outsider.

  13. Has anyone tried the GAPS diet for celiac? My thought is that it would be better to fix the root of the problem than take a pill so one can eat gluten again. And would the body create another problem elsewhere if you suppress the reaction to gluten?

  14. Do patients with RA also have Celiac? I understand the biologic’s used to treat RA these days are pretty specific, expensive and require weekly injections. Are biologic’s what are being researched for Celiac? This kind of pharmacutical help I could live without. Changing my diet has been easy.

  15. This supression of T-Cells sounds like the same issue I face with psoriasis, which is helped by RA treatments like Humira. I am Celiac and was gluten free before I went on Humira (2 injections a month BTW) so I wonder if it is helping me avoid gluten hits, as I have not had any for some time. Even when you are careful, its hard to avoid 100%. Interesting. I always thought the two auto-immune diseases were connected somehow. Maybe I can go have that cream puff now??? :-)

  16. What about people with celiac disease and no symptoms? I’m not worried about immediate reactions to eating gluten but to the long term effects of gluten. This just talks about symptoms but I think most people with the disease are less worried about the short term and more worried about the long term.

  17. From the first time we read about a pharmaceutical cure with my son who has Celiac…we discussed with him the fact that with each medication you take there is always some side effect. Whenever you choose to take a medication you always have to weigh if the benefit outweighs the risk of the side effect. If you don’t have to chance it–why would you? Just eat gluten free, no side effects to worry about. I agree, eating out is the biggest challenge, home has become easier for us since his diagnosis last year. It takes about that long to learn the diet well. We have learned that restaurants can be educated though–you have to seek them out, and eventually you will find you can make some caring allies locally–and learn of others through friends and support groups for when you travel–and where the closest Whole Foods may be. Yes, it’s some extra effort right now, but it’s getting easier and if we all as a community of Celiacs put in the effort to help educate our communities (by doing things as simple as requesting a gluten free menu when you are at a restuarant that you know doesn’t have it–and open some dialogue)–it get’s people thinking. You might be surprised at what a catalyst something very benign like that can be!

  18. I am a Celiac without symptoms. Very hard to know of I am 100% gluten free. But I try very hard and am living fine being gluten free. Not sure that an IL-15 inhibitor wouldn’t cause worse problems…i.e. tumors, etc. I am more worried about cancer down the line from Celiac…increased risk of Non-Hodgekins Lymphoma or esophogial cancers.

  19. As a scientist – this is one study. More evidence from independent labs needs to be generated to corroborate the findings & suggested mechanism. This study is in mice. Can we yet tell if humans will have the same response? I second the point that celiac’s disease may not only encompass the intestinal atrophy. Humans are highly variable test subjects, so I doubt that there will be a silver bullet fix for celiac’s.

    As a celiac – point taken about how wheat as fillers, etc., is bad for you. But I think it’s worth it to encourage researchers to strive for a cure because we always learn more about the disease in this process. And why not get big pharma to spend money on learning about this disease and help give it publicity? Yes, the gluten free diet is a reasonalbe and safe alternative. We’ve got it pretty good compared to RA or MS. However, please don’t tell me what I should and should not do to my body. For some, the side effects may be worth dealing with, for others, maybe not. I think it’s best to try to move forward with both awareness and therapies, and let each celiac make informed, thoughtful decisions based the information available. Freedom of choice, people!

  20. If their were freedom of choice it might work. There is no such freedom on a societal scale. Large Corporations put their food scientists (that’s what they call them) to work on your evolutionary need for sweet, salty, fatty tastes and then buy the eye sight level shelves at your local supermarket to entice your buying. There is no choice for most, along with the advertising and govt recommendations, these evolutionary keys to eating make free choice a joke.

  21. I have Celiac Disease and am 71 years old. My disease was not diagnosed until about three years ago so I have spent my entire life spending a lot of time being very ill and being misdiagnosed and just getting sicker. I am now eating wheat and wheat gluten free, even lipstick, etc. It is a difficult diet and not much fun when it comes to wanting to eat out with friends. Besides no gluten, I cannot have soy, corn, dairy, fat, sugar, salt, because of Celiac I have been diagnosed with Diabets recently and lupus and a blood clotting disease. Already have arthritis, osteoporosis, ulcers, etc.etc. Sooooo, I eat good vegetables, some furits (not too much sugar), simple meats, and very little to NO RED MEAT. I am also a fourteen year breast cancer survivor. Exercise, as much as you are allowed, veggies and fruits and healthy meat if there is such a thing, are it. I don’t believe in anymore drugs with so many side effects. I also try to drink the best water I can buy, and I take Vitamin D, B12, B6, Folic Acid, and tiny tabs under the tongue so they go directly into the blood stream and don’t have to process in the intestines. I see an indochrinologist (sp), to help me with all of this. No meds except for high blood pressure and may or may not be on meds for diabetes.

  22. NO THANKS!! you take a pill to treat one thing and it creates or damages something else…again, NO THANKS…..I’ve had Celiac for 14 years and have lived a pretty normal life eating gluten free…yes, it takes effort but at least my disease won’t kill me and is easily controlled by diet. I for one will not let the researchers and/or pharmaceutical companies feed me a bunch of artificially made “cure”…if you eat gluten free that’s all the cure I need. What we NEED is more education on the disease…I counsel people with the disease on how to eat and would love to become the voice of proper gluten free eating…enough is just not done to educate. So no drugs for me thank you very much!

  23. about 5 years ago i had both non-hodgins and hodgins disease and the drs.said that this may have caused me to develope this possiable?thanks clara holt

  24. I am 63, had Celiac all my life, but didn’t know until about 6 years ago. Doctor told me at 12 that I had “chronic functional diarrhea”. I investigated an acupuncture treatment that promised relief after about 25 treatments, but the practitioner asked why did I want it? I replied “so I can have a beer with my friends and eat sandwiches” and he replied, “so you want to fix your body so you can wreck it with something else?”

    ’nuff said, living gluten free is a much better option than trying to cure it. BTW, I have psoriasis and RA, both of which have improved living GF


  25. This is certainly a hopeful study…The side effects, that include reducing cancer blockers, IL 15, is a major concern…Is there a specific number of IL 15 we need to block tumors or is it not measurable?…Is there a blood test to let us know if we have IL 15 and how much?…Recently I read that drug companies are using foreign studies and they are not being monitored, scary, you bet…We should know all the facts before we embark on any new course of action…Been there done that, eggs anyone?

  26. Well looks like Accutane is the culprit again, it seems to be what triggered my husbands ulcerative colitis and celiac disease. Thank goodness more research is being done!

  27. If your celiac is refractory — as mine seems to be — the GF diet is necessary but insufficient. I’m still symptomatic (diarrhea, profound fatigue) even though extremely careful. I don’t mind the GF diet; and if it were working, I would agree with the letter-writers about the danger of a “pill.” But we’re suffering here.

  28. Frazier captured my thoughts exactly. Eliminate the source of the problem, not a drug/bandaid, to create more symptoms. Cathy

  29. This is wonderful news! My 2 year old daughter was diagnosed with celiac disease last year. A typical tot she is a thumb sucker, wants to touch everything, hands are on the ground, and is tempted by fun looking treats, play doh, etc. In other words, there are risks for cross contamination that older kids and adults do not have. We are a completely gluten free house, but how is a little one to understand what is and isn’t safe for her when we’re out and about? And we do go out. I would love a safe med to keep her safe. Big phama isn’t always evil-I have a seizure disorder and have only had 2 seizures in the last 35 years because of my meds. Plus a med might be able to open up military service, the Peace Corps and other options to folks living with celiac.

  30. I don’t know about everyone else, but as someone who is in their early 20s, I really don’t care how “bad” the “normal” food is, I want to eat up all the fat I can, while I can. I live in a really, really small town and finding gluten free food isn’t always that easy. There’s enough that I can get by, but I’ll tell ya, I really miss going to fast food restaurants or just going to a restaurant and being able to order everything on the menu. I miss having lots of options. I’d rather take the drugs.

  31. Lots of interesting comments here!

    I was dx’ed 8+ years ago, and have never knowingly eaten gluten since. (Two of my five children have CD, as well.) I must say, I’m VERY skeptical about a drug for CD. Not only would I be leery about its effectiveness, but like others have pointed out, would the side-effects be worth the risks? Especially if a side effect is TUMORS?? I think not. That seems ridiculous to me, when a g.f. diet is the cure. I’m truly thankful that, if I’m going to have a disease, it’s one mediated by my diet, and drugs are not necessary.

    That said, I know there are people like Sara (comment just above mine) who prioritize an easy lifestyle above being healthy, so maybe the drug would be better for people like her. I know another person who has CD and who has bipolar symptoms when eating gluten. She would rather take bipolar meds and be “normal” — that is, eat gluten. Personally, I’d rather be “abnormal” and LIVE!!

    Another thing to consider (maybe I missed it in another’s comments?) is, what about non-digestive symptoms?? I had serious depression and “chronic fatigue” symptoms before I was diagnosed. Diarrhea (which I also had) was the least of my concerns!

  32. A GF diet is difficult, but not impossible, to follow. The social aspect of eating is the hardest part of following this diet, as it is with other diet controlled diseases. The older you are, the more acceptable your diet choices are. If I, as an adult female, order just a salad at a restaurant, nobody thinks twice about that. If my 18 yr old son does, that is an oddity. The social situations that cause a kid to feel “abnormal” are all around them. The bus for the basketball team stops at Subway on the way home from the game. The freshman at college can’t join in on the midnight pizza. Watching as the kids hanging out at the dorm are eating cookies that someone’s mom sent. All they want is to be “normal”. If there was something to give people a choice, that would be the best option. Those who don’t want to use it don’t have to, those who want to can. And perhaps, following the GF diet, but having a remedy available for special occasions, would be the best option of all.

  33. This is just like Big Pharma. Find something that is treatable by diet, and come up with a drug for an ‘alleged’ cure. They will push the drug on celiacs and people afraid of developing the disease. Personally, I think I am better off not eating regular bread, fast-food sandwiches, and fast-food pizza. White flour is terrible for your body anyway. Sometimes, it is not the most convenient thing, but in the grand scope of all the diseases out there, it’s pretty insignificant. The slogan ‘Just Say No to Drugs” comes to mind. Most of the time, the cure is worse than the disease itself.

  34. As an internist and new celiac, all of your concerns and hopes are valid. Yes, inflammatory blockers are exciting, but they can have multiple side-effects, not to mention prohibitive costs. Most of the research is in a treatment or a cure, b/c that is where the money is– it’s sexy and innovative. Pharmaceuticals are great when you *really * need them and it is the last resort; but oftentimes, they can make our bodies even more imbalanced. What is so much more healthful and sustainable, as many above have mentioned, is to allow our bodies to heal themselves naturally with whole foods and lifestyle changes (I mean these on a cultural level, not just having the individual deal with it in a blameworthy fashion, which happens all too often).

    Below is an article I find incredibly promising– the idea behind it is that these researchers in The Netherlands have compared our modern wheat varieties with varieties from up to 100 years ago. They tested one of the specific gluten epitopes known to trigger inflammatory T-cells in CD and found that it is much higher in content in modern wheat varieties than in those pre-industrialization. On top of that, they found much less genetic variation in gluten epitopes used today, which again, can help explain why CD and gluten sensitivity is exploding these days. They go on to suggest that not only could switching back to older varieties likely prevent those w/ genetic susceptibility to CD from developing the active disease, but that it could help reduce symptoms of current CD patients.

    This is exciting b/c this truly goes back to the etiology of why CD/gluten problems are becoming more prevalent. This is the direction we ought to be looking in, since a new pill or treatment can so often times lead to further unforeseen problems. The problem with this approach, of course, is that it is not a new sexy man-made solution that can be packaged and marketed. But does anyone out there know of ways in which we can promote this kind of research? Comments welcome!

  35. I think people are missing the point that this study could especially help those with SEVERE disease that is not completely controlled by diet. Yes the GF diet will keep most people symptom free but there are those of us in which the diet does not completely control symptoms. I happen to be militant about my diet ( I have not even been in a restraunt since my dx. and I bring my own food to family get togethers). However, I am still symptomatic. It is called refractory CD. For some of us, taking a medication for CD would be no different than taking one for RA, diabetes, high bp, etc.

  36. Shallen, when were you dx’ed? It took me a good two years for many of my symptoms to clear up, and even now, 8+ years later, I still feel only… 80% healthy or so, and really think many of my symptoms will not ever clear up entirely, perhaps because of the 29 years of gluten I consumed before my diagnosis. I think all of the celiacs I’ve met are in a similar situation, some more, some less. But, to your point, if those in your situation would take this drug (or others) in ADDITION to a g.f. diet, that would make much more sense to me than medicating while eating gluten because it’s more convenient or socially acceptable.

  37. As a 20+ DX Celiac I have seen much of what has been described here ~ non optimal health although being absolutely GF I would suggest a good endocrinologist might have an answer. Thyroid problems abound with CD folk and using a natural thyroid med might be your answer. If your endo guy suggests/insists on synthroid or other synthetic Thyroid meds run out of the door and find one that suggest/uses natural dessicated porcine thyroid. Most MD’s have been brainwashed by big pharma on this issue (and many others as well). There is relatively new thinking on levels of TSH and free T3 and T4 so do your do diligence and start reading, you may find you will disagree with the MD that you are currently seeing. Where s/he may see no problem you might, with better education about this issue.

  38. Taking a pill to “prevent” celiac symptoms is NOT a cure. It’s just another way for Big Pharma to fill their pockets while causing people to develop more problems from pills…of course they’d want job security! My toddler has eat gluten free and I’d like to think that we’re doing just fine. Of course, it’s more difficult when eating out and him being a toddler, well let’s just say that he’s not going to eat a salad for dinner.

    I’d really be interested in finding natural ways to avoid symptoms (other than not eating them). For example, eating a certain combination of foods may cause the body to absorb and react differently. Or, what herbs may help. People all over the world has been using natural medicine for thousands of years. There’s got to be something that could be used for celiac people as well!

  39. I have been gf for 2 years, I have become more and more sensitive as time has gone by. I do not get glutened by food any more, I have found that I am so sensitive that I can get glutened by scented candles, if my friends wear hairspray or perfume, if I walk past bread in the stores. These fragrances and smells are everywhere, I take glutenzyme to help combat this issue but still get sick. I don’t know what I would do without glutenzyme as it minimises the sickness. Both my children are gf, we all have Celiac Disease and I have noticed my daughter is becoming sensitive to fragraces also.
    I know my children struggle with all of the social side of being gf, food is a huge part of social events and it is just extremely difficult for them. Taking food to events like this is the only way we can be a part of these social gatherings.
    Being on the gf diet doesn’t stop us getting sick from fragrances and other particulates containing gluten, I would love to be able to take something that would minimise my bodies reactions to these airbourne gluten bugs. Obviously, I would seriously have to consider any negative side effects but I would love to not be so sensitive and if a medicine can do that I would be willing to try it.

  40. I am a 66-year old female who most likely has had Celiac Disease since childhood. I also have Fibromyalgia, Chronic Fatigue, Lupus, and most likely, Sjogrens Disease. I wasn’t diagnosed with the first two, even though the symptoms were there from early childhood until 1990, and the severity forced me to retired in 1994 on full medical disability. I was miserable 90% of the time, and took my doctor’s advice to excercise by walking at least a mile every other day, and swimming the other days. After 2 years of that regimen, I was no better off, and my stomach was always bothering me. It took moving almost 2,000 miles away from where we had been living and finding a doctor who was more interested in getting to the root of the problem. Last year I was finally diagnosed with Celiac Disease, lactose intolerance, and the inability to digest raw vegetables and fruit…diarrhea was my constant companion, otherwise. We finally found a compounding pharmacy that was able to provide a gluten free fiber source with calcium and magnesium, and I’ve been on Vitamin B12 shots now for several months. Unfortunately, adjusting the diet hasn’t been the easiest thing to do, although we have found many gluten-free foods in our area. The problem seems to be the damage already done to my intestinal tract and the additional complications of Lupus and Sjogrens Disease. I have high blood pressure, but have it under control most of the time. I also have seizures of a sort that have baffled my doctors and the medications I have to take to ease the symptoms probably add to my gastric distress. I eat as organic as possible, drink plenty of pure water, and take Vitamin D and C as well as B complex. I am fortunate to have good days—about 4 in 7 if I’m lucky, and 3 in 7 if I’m not. Cross contamination is the biggest buggaboo.

  41. There are always benefits to research! As a researcher, it is difficult to predict how human results will differ when initial tests are conducted with a murine (mouse) test subject, but we should be glad that there are groups willing to study this disease and attempt to make new discoveries….every little bit helps!

    While I don’t believe pills should be a fix for everything, I don’t feel it is necessarily fair to attack “big pharma” as there are thousands of people who depend on drugs to manage chronic life threatening diseases (like epliepsy as mentioned above, allergies, migranes, etc….). Often times there are dangerous side effects of taking medication, so it is always good to be careful and EDUCATE yourself about the drug you are taking BEFORE you take it. In addition, you are responsible for your own health! Just because your doctor tells you something or prescribes you something, doesn’t mean you shouldn’t do your own research about that disease or drug.

    As far as diet goes, it can massively suck having eat gluten free at times (I have to as well). I know we all have things that we really miss (beer for me), but when it comes down to it, it is generally much healthier and closer to the way we should be eating.

    I am delighted to see that there are research groups making new findings about this disease. Thank you and keep up the good work!!

  42. While I usually don’t get excited about any type of gluten free treatment news I think this one IS exciting. Honestly I am FINE with eating gluten free the rest of my life; I am blessed to be a pretty good cook/baker and am able to eat just fine. Once I became accustomed to the gluten free lifestyle I am satisfied with it, mostly – eating out and worrying about cross contamination is never fun. Sure I don’t have to eat out and I don’t have to eat processed foods ever again, sure I would probably be plenty healthy too – BUT that’s not what I want. I DO eat out and I enjoy eating out but I never enjoy the results of cross contamination when it happens. I would be very happy to continue this way the rest of my life if I knew I could never have a reaction from cross contamination again and yes I do understand it may not be as simple as this nor do I expect anything to be side effect free. BUT I can and will continue to hope. Oh and before you nay say me, please understand I am not for big pharma but like I said I can hope and maybe even dream a little.

  43. If this new treatment works for Celiac, will it work for gluten ataxia? I have both, and the neurological effects are 100x worse than the GI effects – they for months, affect my ability to work, think, enjoy life. But even better would be a treatment to re-educate my immune system so that if no longer sees gluten as foreign! The side effects of long term anti-IL15 would be pretty significant.

    My sensitivity is also very high and the gluten-free diet is just not good enough. Even with my best efforts wich include avoiding most processed food, avoiding restaurants (how’s that for killing a single gal’s social life?), I still get glutened a few times per year. Considering that the effects of an accidental glutening can last for 2 months, I spend a good portion of the year feeling and functioning poorly. So, even if a gluten-free diet works for most, it is not enough for me. Any treatment that I could add to that, to improve my quality of life, would be welcomed.

  44. I’m surprised that posters would argue about research on the path to a cure. The official published reaearch reports are one thing but the knowledge gained along the way is of great value – even if it’s only hypotheses shared with other researchers at conferences.

    It’s great that many of you have carved out a lifestyle that works for you. If you’re putting down others desires for less restrictive lifestyles then you’re not really being supportive. I get that enough elsewhere thank you very much.

    To agree with other posters it’d be nice to have that beer offered by a friendly neighbour, travel MUCH easier, or not make a big fuss about food when socialising.

    Be well all!!

  45. My most recent post highlights something I discovered not that long ago from I would like to look more into this as well as that and see what can be done to get rid of celiac once and for all!

  46. Hi am 25 years old and My disease was not diagnosed until about two months ago so I have spent my entire life spending a lot of time being very ill and being misdiagnosed and just getting sicker.
    I also have Cohn’s and am taking humira (adalimumb) as a treatmeant for one year..
    ( gluten free diet ) am on it for two months, I miss wheat taste :(
    God help us, I hope they find a cure ..

Leave a Reply

Your email address will not be published. Required fields are marked *

© 2010-2015 Triumph Dining