My first post about Columbia’s celiac disease symposium was heavy on snacks, light on facts. That’s partly because, as I mentioned, many facts are undiscovered. But also, under the residual influence of my sugar high, I got a bit carried away and didn’t make space for what I did learn.
The comments on that post made it clear I’m not the only one interested in medicating my symptoms into oblivion, and just as clear that many have serious reservations about the idea. So, I thought I’d circle back to a few more questions about the celiac disease medication options being developed:
What non-drug options exist?
Many of us have ongoing symptoms. But that doesn’t mean we all have non-responsive celiac disease or the dreaded refractory CD, and it doesn’t mean we all need medication.
In some cases, symptoms are not due to celiac disease, but to coexisting autoimmune diseases or other conditions (e.g., small intestinal bacterial overgrowth or “leaky gut”). These conditions may have been triggered by your celiac disease, the trigger for your celiac disease, or just coincidence: a sign of your good luck. In any case, if you have another issue, you have to treat it; various options exist.
In other cases, modifying your diet even more can help. You may be inadvertently consuming gluten. You may have other sensitivities—most commonly lactose intolerance—or allergies. You may need to go low-FODMAP (more on that to come). And you need only glance at the “new and popular” gluten-free cookbooks on Amazon to see how many GF people are deciding to go paleo.
Interestingly, several bigwig doctors at the conference claimed to have no idea what paleo is. A fellow attendee asked about it, and they shrugged the whole thing off as a passing fad beneath their attention.
Banksy doesn’t know what paleo means, either. But he’s not my doctor.
Photo © Lord Jim | Flickr
As a vegetarian, I’m far from espousing the paleo diet, but I find the doctors’ cavalier attitude absurd, considering how many of their own patients must be going paleo, and the diet’s striking similarity to the “gluten contamination elimination diet” that has demonstrated success in one small study, in which over 80% of patients with ongoing symptoms became symptom-free.
Both diets require cutting out grains, legumes, and processed foods. What sets them apart is philosophy: paleo is about changing your diet for life, with the idea of eating the way we evolved to eat; the GCED is about restricting your diet for a limited time to target a specific issue. (In the study, many participants returned to a “standard” gluten-free diet after six months, without new symptoms.)
In my opinion, both diets, as well as their offshoots (e.g., The Wahls Protocol) should be of interest to doctors engaged in treating patients with non-responsive celiac disease. But at the conference, inexplicably, no one addressed them. So if you were wondering what we know about going grain-free, the answer may as well be nothing.
Anyway. Back to drugs. Who needs them?
Well, we can say who doesn’t: anyone without lingering symptoms, anyone with symptoms who has already found a solution, and anyone who feels the symptoms they have aren’t worth the trouble of taking a pill.
Even when drugs are available, it’ll be your right to be suspicious of them, and certainly your right not to take them. But consider this: the main arguments against taking medication are:
- expense—but the gluten-free diet is expensive, too
- hassle—but the gluten-free diet is a hassle, too
- dependence—but we’re all dependent on the gluten-free diet already
- side effects—but the diet has those, too:
As for medication side effects—who knows? But the drugs currently being developed are meant to target gluten, not the body, so their side effects may in fact be less severe than those of the diet. Not many things affect us on more sides than diet does.
For those of us who want them . . . when can we get them?
The panel of reps from Glutenase, Larazotide, and Immusan-T, gave some very slippery answers to this question: “no way to know”; “too many variables”; “developing a drug is a marathon”; and so on.
The moderator, much to his credit, insisted on pinning them down: “Assuming things go reasonably—not miraculously—according to plan, when can we expect these drugs to hit the market?”
One drug representative gave a very flip answer to this question (perhaps indicating a lack of confidence in his ability to answer it). Another seized this opportunity to lean forward and intone, directly into the mic, “Three years.” That set the bar: the other two grudgingly agreed that three to five years should do it.
That’s not so far off (!), but we do have some time to decide whether we want to take medication in addition to our diet.
Based on a Sprue Story 
So we are back to having discussions on pills to fix Celiac disease….we need to remain focused on our food and how it is grown. Please realize the drug companies are out there to make money. Ok so the cycle is GMO and pesticides in our foods oh you are now sick ok take this pill oh you are having side effects from the pill take this pill to help counter act that pill…where does it stop?! When will we just learn it is about eating real food and not about a pill fix. Gluten has no nutiotional value yet every one is so worried about not being able to eat it. We as citizens of the United States need to stand up to these drug companies and send a clear message we don’t want GMO foods nor do we want to feed the world. What we do want is to learn about growing clean food and help the world to grow naturally not chemically.
Hi Carrie, thanks for your sharing your thoughts. Just one note—the two drugs closest to being finished are not actually replacements for the gluten-free diet. They’re add-ons to help make the diet more effective.
However, Immusan-T, among others, is working on a vaccine, and to be honest I’m looking forward to that. If there’s a choice between removing more foods from my diet and adding some back in, I’m personally in favor of the latter—though you’re entitled to your opinion, too!
My only counter to that is – we will never be able to get away from cross contamination. That is one of the biggest challenges of this diet. As hard as we try to avoid the thing that makes us ill, it is sometimes in vain. I don’t like the idea of medication so much either, but if the pills that help minimize effects from cross contamination become available, I would definitely consider trying them.
Yes, I feel the same way. If the diet were not so “arduous” (that was a word that got tossed around a lot by the presenters at the conference) it would be a different story. As is, being able to take a pill to catch whatever gluten gets in despite our care would be great (if it worked, of course).
I don’t know how important going non-GMO is. I don’t know if GMOs significantly harm us in any way. I tend to not get riled up by recent “discoveries” and fads because in my 61 years I have seen quite a number of these reversed a few years later, sometimes after severe consequences to individuals and industries (read people’s jobs).
What I do know is that because of the advances in the way Americans grow food, we have saved countless lives by growing so much food that we have “fed the world” while other countries cannot take care of their own because of ancient farming practices, corrupt governments and the resulting poverty and hunger.
It saddens me to hear you say that the U.S. doesn’t “want to feed the world.” You may not want to, but I am grateful and proud that we have been able to save countless lives by our advanced farming practices.
This is not to say that we cannot make improvements in the way we do things, but we need to be sure of the science before throwing the baby out with the bathwater. Only time will tell if going non-GMO is on balance worth the results.
Hi Dawne, thanks for the thoughtful comment (and I just clicked over to your blog, which I’m looking forward to following now, and want to also say THANK YOU for the lovely post about my blog—glad to have you as a reader).
I too am not on board the anti-GMO train; I don’t think there’s enough evidence they’re bad for us. I do think there are harmful social implications of essentially forcing poor farmers in developing countries to plant the GMO crops and only GMO crops (even if they fail in the climate, in which case there is usually no reimbursement and farmers simply go bankrupt), which is what some companies like Monsanto are doing.
As far as the US feeding the world goes, I’m torn, because of the above—I think it’s a laudable goal but doesn’t always work out the way we wish it would. 😦
I think you all might find this interesting. My 30 year old son was recently diagnosed with celiac (perhaps a year ago). While feeling better, he continued to struggle and has cut dairy out, too. A couple months ago he went on vacation to Costa Rica and stayed in a rental house where they cooked for themselves. He drank regular beer and ate gluten and had no symptoms. His first reaction was that not having the stress of his job may have been the reason.
He went to a boutique doc about a month ago who interviewed him for 2.5 hours. The doc’s preliminary thought is that because he was born by Caesarean (missed the bacteria picked up in the birth canal as I understand it although it may also have to do with the forces exerted coming down the birth canal) and may have had antibiotics before the age of two (lots of ear infections), he may simply need to repopulate the flora in his intestines. This is by no means conclusive, of course. The doc did some tests and he goes back in a few days.
So, my son currently eats some gluten but doesn’t go hog wild, he has eliminated dairy almost completely, takes probiotics and sees no more ill effects than before. He is eating gluten for the testing that is still to be done.
Perhaps I’ll post more on this when we find out more.
I worry about all drugs. If there were a magic pill to make all my IBS and Celiac symptoms disappear, I would think long and hard about it. I’m not anti-medicine, and I’ve been on enough of it throughout my life to prove it, but I’m also quite happy with the fact that I don’t take any prescription drugs at all anymore. Side effects are a big thing, and dependency — whether chemical or emotional — is a real concern for me.
Someone ought to be paying you to publicize the gluten contamination elimination diet, paleo or not: it is the cure for celiac, “that isn’t quite better.” Following a diet like that, cured 25 years of lactose intolerance, 15 years after I initially went gluten-free.
I inadvertently started eating really gluten-free (with the occasional “no gluten” turkey hot dog, and some gluten free corn chips) because it’s also a lot cheaper to eat simply. I kept feeling better and better, so I kept doing it. I’m fairly certain that I was getting cross-contaminated by eating things in made in shared facilities, before that. (Amy’s entrees, Bob’s Red Mill gluten-free flours, which are gluten-free oat contaminated, guar and xanthan gum, which have their own nasty properties.) The only thing I’d disagree with is the dried beans–I only eat gluten-free beans (Bush’s canned) as well.
It just makes me want to cry, realizing that I’d been sick for 25 years, when if I’d been really, really gluten-free, I would have gotten better; when I was in my early twenties, before my celiac diagnosis, my paternal grandfather, who in addition to being a good ophthalmologist, was kind of an old-style, common-sense, country doctor, said to me, “You should not be lactose intolerant. We’re from Wales and Scotland. There is something else wrong with you.” 25 years later, and a really, really careful gluten-free diet later, I’m finally better.
(Note: I’m not paleo. It’s too expensive, and I’m allergic to red meat. I keep huge bags of rice from Thailand in the pantry, and that’s what keeps me healthy, and able to occasionally pay for things like car repairs and haircuts.)
The last time you wrote about this I was very much in the ‘no more meds’ camp. I’m still not all that crazy about taking more medication but I was thinking about it and I’m coming up on my one year celiac anniversary. For the first half I still tried to eat out. For the last half I think I can count on one hand the number of times I’ve eaten out. It just got to be too much of a risk. A risk I’m not willing to take anymore even though it means missing out on socializing. It’s more than just food. I’ve had to stop something that is good for emotional health too.
All of that to say that I’d give some thought to another pill…but only after it had gone thru extensive testing…preferably by you…since I trust your review. 🙂
I agree that doctors need to start taking notice of alternate GF diet regimens for celiac disease, like the Paleo diet and the AIP diet, as many (but not all) celiacs are failing on the traditional GF diet. Fortunately, the Fasano/gluten contamination elimination diet has become the leading treatment regimen for non-responsive celiac disease (just learned this in research I did for an upcoming article). I’m curious to see if it eventually becomes the primary intervention for all celiacs after diagnosis. I would have been happy to be on it for my first 6-12 months after diagnosis, had I known that it would have likely made my bowel heal quicker and prevented me from developing other food intolerances. However, like most, I was told to just eat gluten-free, and I freaked out and immediately went to the grocery store to buy GF bread, pasta, cereal, etc. I didn’t know any better, but I’m sad that things haven’t changed for those who are being diagnosed now.
Great post! It is definitely amazing how going gluten free because of celiac disease causes you to start thinking about restricting the diet even further. I’ve written about it before and am definitely guilty of flirting with the paleo diet! It will be interesting to see what medical advancements regarding celiac disease emerge in the next ten years. Personally, I’m managing on a gluten free diet, but if there was a way that I could treat celiac if my kid gets it with a pill, I would definitely consider it!
On another note, I love your blog so much that I nominated you for the Liebster Award! Check it out at http://caseythecollegeceliac.blogspot.com/2014/04/liebster-award.html
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