Last week, I had the pleasure of attending Columbia University’s Development of Therapies for Celiac Disease Symposium. Doctors and researchers from around the world gathered to present fascinating talks and Powerpoints full of text almost all too small to read.
Also attending were patients, like myself, and some folks doing fantastic work on behalf of the gluten-free community. Hearing their stories was my second favorite part of the conference. Glimpsing the most cutting edge of celiac science was my third.
First, of course, was the food. Everything served was gluten-free; and, it seemed, everything was served. Bread baskets overflowed, and entrees and sides kept even us vegetarians happy (saag paneer—yum). There was dessert after every meal, even breakfast—which was itself essentially dessert, consisting primarily of muffins, donuts, fruit, yogurt, and “coffee” cake.
In two days I ate more desserts than anyone should eat in a month. I can’t tell you how many exactly, because a) it would be embarrassing and b) I lost count, but brownies, crème brûlée, polenta cake, kheer (Indian rice pudding), and pound cake were not excluded. Some treats were from Pink Poppy, others from By the Way Bakery. So. Much. Sugar.
As if all that weren’t enough, we were also encouraged to take samples, and take them I did: The Simply Bars, Crunchmaster multi-grain crackers, NoGii paleo bars, Schar multigrain ciabatta rolls, and Le Veneziene chocolate hazelnut cookies. The cookies expire in a month, so we’ll have to eat them fast.
Okay, okay, I admit: the point of the conference was not the food. The point was to learn about gluten-related disorders. And I’m evading that point because the conference’s unofficial motto was “Good question! We can’t answer it.”
Much about celiac disease and gluten sensitivity remains uncertain, due to conflicting study results, lack of longitudinal and prospective data (meaning, collected over a period of time as events unfold, unhampered by subjects’ flawed memories), lack of appropriate controls, or the fact that serious research attention hasn’t been paid to this field until recently.
Celiac disease is not a simple disease. You know that, I know that, scientists know that, and (some) doctors know that. Unfortunately, that’s about all we know.
Still, because I did learn a lot about what we don’t know, this will be my first in a series of posts about the questions the conference raised, and the answers that may someday prove to be true—at least in part. I call it “Sprue/False.”
We start with a big one:
This question was at the symposium’s heart. If “go gluten-free” were all we needed, no one would be developing therapies (other than snake oil peddlers). “Go gluten-free and wait” is another option. Multiple presenters affirmed it can take years for adults to heal. But is that the best we can do?
Unsurprisingly, the drug developers say no. Glutenase (a.k.a. ALV003, and importantly distinct from “Glutenease”) researchers had a pool of about 200 gluten-free celiac patients keep a seven-day symptom diary. Over 90% had at least one day of symptoms, and 44% reported five to ten symptoms. Three quarters called their symptoms “moderate,” “severe,” or “very severe,” and 20% missed social events or called in to work.
Also potentially significant is the fact (stated in another presentation) that even on the gluten-free diet, adults’ villi may never rebound to “normal” length—meaning, possibly, we don’t regain the ability to absorb nutrients as well as we should. Yet another presenter suggested we may be wrong to assume that all is peachy—from a health perspective—for diagnosed kids.
“We see an unmet medical need,” said Daniel Adelman, of Glutenase. “The gluten-free diet is all we’ve got, and it’s not enough.”
But doctors aren’t so sure. Dr. Julio Bai’s comment that his patients did not make such complaints met with widespread head-nodding from clinicians. More than one expert scolded the drug developers for not surveying a control group. “For all we know,” their argument went, “everyone would report weekly gut symptoms if given the opportunity.”
I’m disappointed they didn’t include controls, but otherwise, I’m with the druggists. I’ve been scrupulously gluten-free for well over a year and still don’t feel well. And faulty memory, schmaulty memory, I know it wasn’t like this before. There has to be something more I can do. The question is, what?
Patients can help answer that. Both Larazotide and Glutenase—drugs being developed as adjuncts, not replacements, to the GFD—are in clinical trials. Neither trial is currently requiring participants to deviate from their usual diet, and both have been through extensive safety testing.
I’m investigating Glutenase’s CeliAction Study, myself. Celiac changed my life and so far the GFD hasn’t changed it back. I’m ready to try something new. Worst case scenario, I get a placebo or the drug doesn’t work. Best case? My life returns to really, truly good enough.
Over the next few weeks I’ll explore more unanswerable questions about gluten-related disorders, with less preamble about brownies. In the meantime, tell me: In your experience, is the gluten-free diet enough? Would you ever participate in a clinical trial? Have you already?
Post #2 on the conference is up: check out “More on Drugs” and share your thoughts!
I had no idea that conference was a food magnet. Maybe I will go next year! I am one of those adults (life long celiac, not diagnosed until my 50s) whose villi had only partially healed after 3 years GF. That was a couple of years ago. I still don’t do well with dairy so probably those villi are still blunted. I just don’t eat dairy for the most part. Here is the problem with self-reporting on “symptoms”: was it what I ate at a restaurant? am I now sensitive to oats? am I eating too many FODMAPS? but FODMAPS are good for you…do I also have IBS? am I getting little bits of gluten that are adding up because I live with gluten eaters? It is hard to isolate the problem sometimes….
That’s a really good point. I ask myself that kind of question too, especially wondering whether I’m eating too many FODMAPs (and/or whether I’m doing myself harm by remaining vegetarian).
But the thing is—and again, I recognize memories are faulty—I really don’t think I had to ask myself those questions in the past. I had a stomach of steel; I could eat as I pleased and never ever feel sick afterwards and wonder what I ate that did it. Then, very suddenly, the opposite was true.
I’ve been assuming celiac disease is the cause of that, though it’s possible there’s some other root cause that both triggered my celiac disease genes to turn on AND is causing my ongoing symptoms (definitely something I’ll be looking at in another post).
I don’t know if the situation is the same for you? For me, I’m not satisfied with “maybe it’s IBS” because in my opinion it’s a blanket diagnosis that means next to nothing.
Thanks for sharing these thoughts, and YES, go to the conference. I recouped the early bird ticket price in muffins alone. 😉
I’m convinced, although it varies from person to person, that there are other things that cause an autoimmune response, and you have to avoid those as well. Basically, you can have an autoimmune response in your gut to other things, if you have celiac.
Personally, I had to cut out red meat and eggs. Once those were gone, as well as being scrupulously gluten-free, I got almost completely better. My lactose intolerance went away, as well.
I’m glad you found something that works for you! New dietary experiments are also on my “to try” list for 2014. Considering a trial run of the “gluten contamination elimination diet” or going low-FODMAP.
I read the diet. I think that’s a really good idea. The only thing I’d add is gluten-free corn tortillas.
I’m a hypersensitive celiac, and I’ve had to limit what I eat to whole foods or things made, not just in facilities where they certify gluten-free, but where the facilities are dedicated gluten-free, and oat free as well. (That means no Bob’s Red Mill.)
I realize the anti-oat opinion is not mainstream, but, there are a significant portion of celiacs who can’t eat even certified gluten-free oats without issues. (I’d give you a cite, but the studies are all relatively old.)
The other thing is that for about a year, I had to be fructose free. Supposedly, if you do fructose free for long enough, the bad gut bacteria die off.
And finally, has anyone said anything to you about microscopic colitis? I had to go gluten-free, then get treated for microscopic colitis, then find the food allergies, then go fructose free–and now I’m better.
Keep trying. Eventually you’ll figure it out.
I think the control group is very important affecting the conclusion that celiacs don’t heal. My husband is not celiac but mostly eats gluten free but has lots of bowel variation. I am celiac and I feel I’m worse off, however. I am focused on the variation and have to plan my day around it. It is relentless and I usually can’t point to a reason. For me it has been three years with vast improvement and acceptance that this is my lot in life. I can have a miserable focus or move on to a happy life by dealing with it.
Good attitude, and one I totally agree with (though have a hard time putting into practice).
I think bowel variation doesn’t matter much if it doesn’t interfere with your day or how you feel; that’s one reason healthy people have a hard time understanding why “a little stomach trouble” is such a problem for those of us who have it every day.
I would not participate in a drug trial. The ONLY thing I love about my celiac diagnosis is I don’t have to take drugs. I can remove gluten and feel better. Undergoing LEAP testing was also tremendously helpful to me, as I identified other food triggers that cause me problems. I have never had digestion issues, my celiac symptoms are primarily insomnia and joint pain. Neither completely went away without also removing my other food triggers—salicylates late in the day and soy any time. I’ve only been gluten free since July. I’m hopeful that as my gut heals I’ll be able to increase salicylate consumption. Avoiding many fruits and vegetables just doesn’t feel like a good long term plan.
>>I would not participate in a drug trial. The ONLY thing I love about my celiac diagnosis is I don’t have to take drugs.
Lindsay, I feel the same way. I have to take so much medication for my lupus I don’t want to take anymore.
Molly, thanks for sharing about the symposium. Looking forward to the rest of the unanswered questions. 🙂
You know, I would feel the same way, except that in my opinion, a strict gluten-free diet is more cumbersome and possibly more expensive than a slightly less strict gluten-free diet in coordination with a medication. Plus, as Jess notes below, it’s not all that effective, at least for many of us! It’s a lot of work for little pay-off.
That said, if you’ve got your diet to a place where it’s working for you and you feel well, that’s absolutely wonderful, especially if you already have to take other meds. Thanks for sharing your experiences!
This study doesn’t seem to have taken crosscontamination into consideration where improvement on a gf diet is concerned. Also, there’s no mention of autoimmune considerstions alongside celiac disease. They often travel together, and require further foodstyle and lifestyle modification.
While those in advanced stages of celiac disease could find relief with meds, I’d hate to see the epidemic of western food sources being modified, as wheat was to increase shelf stability, to popping a pill to make our bodies feel it’s ok.
Thanks for sharing your thoughts!
One note: I think cross-contamination in minute amounts is considered to be a large part of the reason the gut doesn’t fully heal, and is the main thing that the two drugs I mentioned aim to address. I believe the symptom diary may have been accompanied by a food diary, which would indicate blatant cheating or accidental gluten consumption, but don’t quote me on that. My notes are a bit chickenscratchy.
Thanks for sharing your experience. This is all very important info!
Thanks so much for sharing what you learned at the conference. As you know I am a research “geek” and this whole area intrigues me. Although we are fortunate to have a treatment for celiac disease (GF diet) that does not have horribly bad side effects, like many other autoimmune treatments do, the failure rates of the GF diet are an embarassment. From what I’ve read, heard at lectures, etc., up to 40% of US adults with celiac disease can be categorized as “nonresponsive” to the GF diet based on continued symptoms and/or the persistence of abnormal lab tests, and almost 2/3 do not have small bowel healing after 2-3 years of being GF. If a drug company tried to get a drug approved with such as high failure rate, for any condition, it would never be approved. Although I know that there are many who are totally happy with the GF diet, as we’re seeing, for many of us, we need to have additional treatment options available. I am very excited about ALV003 and am considering entering the celiaction study as well.
Now I feel that I am rambling, but thanks so much for sharing! Jess
Thanks for your comment, Jess! That is such an excellent way to put it; you’re right, no drug would ever get approved with such dismal responses in trials. I am happy for (and jealous of) those folks for whom the diet has great results, but I am ready to move beyond the “devil I know” to the one I don’t. Let me know if you enter the study! If we both do, I guess that makes us study buddies. 😀
P.S. You weren’t rambling. 🙂
Thanks for posting about this! As much asI love the theory of a totally diet based, non pharmaceutical treatment for celiac, for me, despite turning my diet totally upside down, in still sorting here typing through pretty intense stomach pain and unpleasantness…sadly that’s still pretty every-day for me.
I’m also just dismayed every time I start reading by the sorry state of celiac research to date. So many questions and so few real answers! I do think a lot of that is because the lack of medical/pharma treatments means the money/incentive just hasn’t been there, so even if it takes a while for any drugs to work well, I’d happily sell out just for the study funding that the big pharma companies could bring to the table if they get interested : )
I’m curious, Molly (or any other nyc folks), have you looked into any nearby study sites for the celiaction study? I started to fill out the volunteer form a while back (and just rechecked), but the only locations it comes up with are in great neck, new jersey, and up in Poughkeepsie – I’m excited about the study, but not enough to trek for hours to participate! But it’s so strange there’s nowhere close to the city, so I’m thinking I must be missing something?
Hey Shaina, thanks for commenting. I’m in total agreement with you, though bummed to hear what you’re going through!
I’ve also had that thought about the lack of funding/incentive given that there’s already a dietary treatment (and have also thought that probably has to do with the woeful lack of awareness in physicians, who at least until recently got much of their “continuing education” directly from drug sales reps). I’m pretty happy to see drugs in development to make this diet a little easier.
I’d looked into the study sites previously and was similarly discouraged, but it turns out Columbia also has a study site that isn’t included on the CeliAction site for some logistical reason.
Here are contact details for getting more info:
Study coordinator: Maria Teresa Minaya
Celiac Disease Center at Columbia University
180 Fort Washington Ave., Suite 936
New York, NY, 10032
I’m really looking forward to the rest of the unanswered questions.
Thanks, Mary Kate! 🙂
Thanks for posting this! The gluten free diet has not been enough for me. Unfortunately, the Celiac disease caused so much damage before I got diagnosed that I also have candida overgrowth and Small Intestine Bacterial Overgrowth. Additionally, I have tested positive for many food sensitivies- too many to list! I’ve been gluten free since August. I’m currently on an intense regimen of drugs to clear out the candida and bacteria. I take Nystatin 3 times per day and an antibiotic (Bactrin) 2 times per day. I already did one round of Nystatin for 6 weeks. Now I’m on the second round for 8 weeks and a 30 day supply of antibiotic. Supposedly, my gut will be healed when I finish this round of meds. according to my holistic physician. I’m wondering if a lot of other people with Celiac also have these gut problems but just haven’t been diagnosed properly. This is such a hard journey and it can be discouraging when there are so many unanswered questions. For now, I’m choosing to believe that I’m on a path to healing and one day I will feel better.
Hi Holly — I hope your physician prescribed antifungals and probiotics, NOT antibiotics for your candida overgrowth. Antibiotics help candida thrive. Best of luck to you on your health journey!!
Thanks for sharing, and best of luck to you on your path. I had my biggest improvement “bump” after a round of antibiotics for SIBO and am planning to ask to get retested to see if I should be doing some more. Don’t want to take a ton of antibiotics, given all the issues surrounding overuse of them, but I guess if there really is too much bacteria in the wrong parts of my system then it’s the best choice!
Good luck with the study! Oh my!!!! I think I would have eaten for ten with that choice of gluten free food!
I haven’t been diagnosed but I know that when I’m eating a grain free diet I feel much better than on a gluten free one. Eliminating gluten free flours is actually eliminating the chance of contamination, just an idea!
Have you tried going grain free?
I think I ate for twenty! I’ve thought about trying grain-free, but as a vegetarian who relies heavily on grains, it’s a bit of a painful idea. I am definitely looking at my options now that it’s been more than a year without a ton of progress. Thanks for the comment and the advice. 🙂
Love this post, Molly. I’ve had dermatitis herpetiformis for over a decade and don’t respond to the GFD alone. Extensive testing, blah blah blah. I’ve taken dapsone for 7 or 8 years now and I’d be lost without it. I can go maybe three days without a dose (I’ve tried, repeatedly), but my symptoms return without fail. I know not exactly the same as standard celiac issues, but I’m just glad to hear someone say the “d” word, drugs. They’re not all bad and I think we should be glad there’s an interest in developing celiac-related medications.
I’m with you entirely. I mean, along with hygiene, medication is pretty much the reason why we live longer and healthier lives today. I am not at all opposed to taking drugs that are safe and useful. If they ever invent a drug that replaces the gluten-free diet entirely, I will be on it so fast.
Great info! Thanks for linking up at our Gluten Free Fridays party! I have tweeted and pinned your entry to our Gluten Free Fridays board on Pinterest! 🙂
What great recipes this week in the link up!
Cindy from vegetarianmamma.com
Diagnosed as an adult in 1981. Back then it was plain rice cakes and peanut butter. Here’s my take: These things we know, 1. The safest place to eat is home 2. Don’t trust manufactured foods 3. Even well intentioned folks can make us ill. We can eat any fruit , vegetable, meat or fish. Plus corn and rice. If you can’t make a meal from that, get out of the kitchen. I would consider the drug only to keep me safe from those people in the world who mean no harm and do much. Take the drug just to eat donuts? Nah.
Replacing the things you miss most with a store bought item often yields sub-optimal results. However, please be grateful for Estrella Daura and O Mission beer, beyond that go to a New Zealand sauvignon blanc.
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