Symptomatic celiac disease driving you crazy? Then try CeliAction with me!

“The definition of insanity is doing the same thing over and over and expecting different results.” A whole bunch of dubiously wise people have told me that. The quote’s attributed to every famous smart person ever, usually Albert Einstein, and it has a certain ring of truth. So I hope you won’t blame me for wondering . . .

Am I insane?

If Albert Einstein said it, it must be true.

If this guy said it, it must be true. (Psst: he didn’t.)

I’ve been dutifully eating gluten-free for nearly a year and a half. But despite saying no to wheat, rye, barley, and even oats over and over again, I’ve seen so little improvement in my health that celiac disease is starting to seem like a sick joke. I can’t help but wonder: Are all those people who claim to recover just punking me? Are you? Is it crazy to continue a rigid, socially hobbling diet without any signs that it’s working?

Luckily, when these questions were threatening to make me really insane, I found a great Psychology Today article dismantling this “definition of insanity.” Ryan Howes argues that many use the cliche as an excuse to avoid the long-term, difficult, and sometimes thankless work of self-improvement. They confuse perseverance—a “strong, valuable quality”—with perseveration, a particular psychological issue. Howes writes:

Repeating the same constructive behavior over and over, hoping (one day) for a positive result is difficult but virtuous. . . .

Perseveration feels compulsive, hopeless, helpless, automatic and unsatisfying. There is a desire to stop, but stopping doesn’t feel like an option. Perseverance feels like striving toward a noble goal, and whether or not it’s reached . . . there is virtue in the effort.

Now, I can’t say that avoiding gluten never feels compulsive, hopeless, helpless, automatic, or unsatisfying. But usually, I feel I’m doing something constructive in hopes of (eventual) better health. The day-to-day results may be nil, but I won’t be giving up my diet anytime soon.

On the other hand, just as it’s not crazy to keep striving in the same way for a noble goal like health, it’s also not crazy to try something new. If you aren’t seeing as much progress as you’d like, it’s a good, sane idea to take extra steps that might help you reach your goal and keep you from going nuts along the way.

That’s why I’m excited to report that I have enrolled in the CeliAction Study!

The CeliAction Study is testing ALV003, a medication intended to break gluten into pieces too small for the immune system to recognize. Even careful people like you and I probably get trace contamination; this drug may keep our immune systems from punishing us for it. It’s worked in a test tube, and only science will tell whether it works in humans.

Now, I don’t believe in medicating problems that have effective, simple, non-pharmaceutical solutions. But I do believe in medicating everything else. If the gluten-free diet were good enough for everybody, I’d be shaking my head at those money-grubbing drug companies with the judgiest of ’em. But for many, it isn’t. I believe that developing new therapies for celiac disease is a necessary cause, and I look forward to supporting it. If you’re interested, I invite you to join me!

You can enroll if you have celiac disease, have been gluten-free for a year, still have symptoms, and are close enough to one of the many study locations (see contact info for the Columbia location here). You’ll continue on your gluten-free diet and do a few other things over the course of 28 weeks:

  • Get bloodwork and endoscopies done toward the beginning and end (fo’ free)
  • Call a special system every night to report on your symptoms (then drift off to sweet dreams about satisfying bowel movements)
  • Stir the powdered medication into a beverage and drink it at each meal
  • Not get pregnant
Only 30% of participants get the placebo, so odds are OK you'll be stirring the real thing into your water glass. (Photo © Dennis Skley | Flickr)

Only 30% of participants get the placebo, so odds are OK you’ll be drinking the real thing. (Photo © Dennis Skley | Flickr)

Like another infamous study, it’s placebo controlled (and double blind), so you won’t necessarily get the drug, and either way you won’t know. You also have to show ongoing intestinal damage in the first endoscopy to be given the drug or placebo. But IF you get the drug, and IF it works, THEN your quality of life might improve.

If those ifs don’t work out, at least you get to be one small cog rolling forward the machine that is scientific progress. Plus you get paid (cha-ching!), and if you’re loving the drug at the end, you get to keep taking it for a while. (Unclear whether that holds if you’re on the placebo. But hey, if the placebo works I’ll take it.)

It’s quite possible I’ll hate the phone calls by the end of the study, and maybe I still won’t feel better. Maybe I’ll feel crazy for having gotten myself into this.

But mostly, I hope, I’ll be happy that I’m persevering toward my noble goal of better health. And if you’re still striving for it yourself, I’ll appreciate the company. Us crazy people gotta stick together.

Does managing a special diet ever make you feel a bit insane? What new things have you tried in pursuit of health? Are you considering the CeliAction study?

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25 thoughts on “Symptomatic celiac disease driving you crazy? Then try CeliAction with me!

  1. Anonymous says:

    Hate to suggest this…but you have been tested for food allergies or in tolerances right? If not, celiac might not be your only issue. I know (well from the internet) a lot of people with celiac with multiple food allergies. I will cross my eyes, fingers and toes that you don’t have any.

    • Anonymous says:

      Also this is Denise from Surviving the Food Allergy Apocalypse but my phone isn’t letting me log in.

      • Molly says:

        Hey Denise! You know, I haven’t been tested for allegies, and that’s partly because I just don’t know who to go to for trustworthy answers. What kind of doc do you see? I also haven’t tried a full-on elimination diet. Might be a good idea at some point. I’m curious to see whether this trial might help first (and again, even if it doesn’t, it’s cool to be a part of it!).

        • denisedaniel says:

          It’s totally cool to be part of the trial! Science is fun!

          Allergy testing is sort of annoying and hit or miss. I don’t think the science has gotten to the point of doing more than giving you an area to look. I’ve gone to an allergist and had Ig-E skin prick testing. However, you have verify any positive results with a food challenge where you completely cut the food all all derivatives out of your diet for several weeks and then eat some of it and see what happens for the next 48 hours or so. In the last round of testing, I tested positive for 7 things, but only 3 were verified with a challenge. I believe that some of them I reacted to because they have proteins in common with some of my more vicious environmental allergies, but I don’t seem to be bothered when I eat them. Also, and this is a big also, you may have false negatives. So that’s fun. I’m pretty sure based on the elimination of symptoms that my corn allergy existed since my 30’s but it never showed up positive in testing until a year or so ago. And there are people in the corn allergy group who have anaphylaxis reactions but test negative on a spin prick test likely because the test doesn’t test all corn proteins. Sigh. Now, if I weren’t so lazy, I could do the full blown elimination diet protocol and food allergy diaries and figure stuff out when I’m having issues, which is actually the gold standard for verifying food allergies, but I tend to use the skin prick testing as a short cut to get an area to look at and challenge. Which I shouldn’t because it’s kinda like using a Ouija board, but again, sorta lazy. I know Mary Kate has done the blood testing, but I’m not sure which test she did. There is an Ig-E test which the medical establishment is generally on board with, and an Ig-G test, which is used by naturopaths, and the medical establishment is dismissive of. I don’t have an opinion on either just because I haven’t researched it myself.

          • Molly says:

            Thanks for elaborating. It’s so tough to know when the establishment is dismissing something because it’s BS, and when the establishment is dismissing something because…well…it’s the establishment and doesn’t like change. It sounds like the best (but most time-consuming) way to go would be a full elimination diet. Someday!

            • Mary Kate says:

              Science is awesome.

              Just my opinion, but I am not sure I personally think it matters which type of testing you do to identify potential allergens. Doing some type of testing gives you a place to start rather than starting from zero with the elimination diet.

              I knew some of my issues were food allergies within a week, as I felt better after eliminating all the potential allergens the test identified — and it was not at all because I was eating healthy at that point. But the real test was the food challenge. If I’d had to challenge all the things that I ever eat? Yikes.

              Good luck with the trial. And if it doesn’t resolve all your symptoms, definitely consider food allergy testing of some sort. Actually, if you want to see an allergist, go ahead and get on the list right now. Might be all the way through the trial before you can get in.

  2. Vicky says:

    Good luck with the trial! Just a thought, do you avoid dairy since dairy and gluten allergies often go hand in hand (don’t ask me why), Sorry to suggest you may have to cut even more out of your diet 😦

    I feel better for eliminating gluten but always feel much, much better for eliminating all grains (though I drift back to my GF bread now and again). I’m my own worst enemy!

    • Molly says:

      No need to apologize! All suggestions welcome. I did avoid dairy for a long time at the beginning since I know that lactose intolerance often goes hand in hand with celiac disease. It didn’t seem to help and I gradually gave it up. I definitely notice extra symptoms when I eat, like, five servings of ice cream at a time, but I think most people do. 😛

      Grains, I hear again and again…but I just don’t want to go there yet. Whole grains are so nutritious that I’d hate to give them up. If I do wind up doing an elimination diet eventually and find that they’re a problem, I suppose I’d do without (same for dairy) but for now I’m hoping to avoid that. I just fear giving up more foods that I don’t actually NEED to, then never feeling comfortable reintroducing them. I totally get the rationale for doing it, but for now, just keeping my fingers crossed I don’t have to…

      • Vik says:

        Hey Molly, congrats on taking the big step! We will all anxiously await your progress reports. I totally hear you about the grains. I have cut back but unwilling to give them up completely. When you are veg-heads as we are, plus GF, the diet is already limited. My gastro doc said the same about FODMAPs. Like, try it if I wanted to, and gave me a list. And he also said that the jury isn’t out on the allergy-testing either. I have seen some improvements on the GF diet and plan to continue along. Most of the time it rolls along ok, pretty much in the groove by now. Today though, one of those giant chocolate Costco cakes appeared at work and the visual plus the fabulous smell almost knocked me over. Felt quite sorry for myself but was consoled that I had some Lucy’s choc chip cookies (favorite GF brand) waiting at home.

        I’m trying to decide if I want to get another endoscopy-the doc will perform the test again if I want it. I was diagnosed a month before you were, and misdiagnosed LONG before that. (I know, b/c in 2007 the antibody test read >100, however I was told the result was “negative”. So didn’t find out the truth until another blood test in 2013, which was read correctly. So… dunno if 1.5 years is long enough to see significant villi changes yet? The latest antibody score was 7 though, so I guess that is a good thing? What do you think?

        Ya know, we are all different. We all react differently to different things. (How is Sprue Jr doing with all this GF bizness)? Plus, every medical opinion conflicts with another medical or anecdotal opinion. And if you still feel crappy (!) and frustrated since what you are doing now, isn’t working for you—FREAKING GO FOR IT! And keep us posted!

        • Molly says:

          I’ve been trying to get Jr to come back and respond herself, but she has demurred, which goes to show just how she’s doing with this GF bizness—she’s sick to death of thinking and talking about it! She doesn’t seem to have any of the mild symptoms she used to have, pre-gluten-free, but she also says that those were so slight that they didn’t even bother her, so the tough social consequences of the diet are forefront in her mind. We almost have the same problem with the diet, except backwards: she’s tired of having to be gluten-free because she never felt unwell in the first place, while I’m tired of having to be gluten-free because I still feel unwell.

          I haven’t gotten the endoscopy done yet to show ongoing intestinal damage, which means I could get knocked out of the study if that test comes back “clean” (which would make me sad, since it’d mean my symptoms are due to something else, possibly undiagnosable). There really ought to be better guidelines on when or whether to get the repeat endoscopy…but it seems that most celiac doctors do the test if people are still symptomatic after a year plus. 7 is pretty low for those tests—woohoo! My blood tests in the negative range for celiac antibodies too, but there’s still a decent chance that internal damage is ongoing. I think that’s the case for most people that Alvine is intended to help.

          So…that probably doesn’t help your decision at all, but keep me posted! Thanks for the comment.

  3. jsherwin2013 says:

    Doctors of environmental medicine test for food allergies as well as chemical sensitivities. Go to the website of the American Academy of Environmental Medicine at this link: http://www.aaemonline.org/. There is a physician locator by state. The most well-known clinic for testing is the Environmental Health Center-Dallas. I was tested and treated there for pesticide exposure. I was negative for celiac but positive for many foods and chemicals. The clinic’s antigens and saunas worked for me, as well as for many others. Good luck!

  4. I love how you’re turning insanity on its head and I totally feel you! Especially with all the health complications I’ve had this summer, celiac has totally been driving me crazy. Congrats on taking charge and enrolling in a study! That takes real guts and I hope your guts really do benefit from it! I’m actually trying to go the food allergy route (fingers crossed) so we’ll see how that goes! Good luck and till then, embrace the insanity! I just call it the weirdness of being a celiac. 🙂

    http://caseythecollegeceliac.blogspot.com/2014/04/winning-as-gluten-free-weirdo.html

    • Molly says:

      Thanks, Casey—and I remember that post! (I love your theory that the universe is just helping keep us all from becoming real-life Mary Sues. How kind of it.) Stay weird, stay sane.

  5. Jess (The Patient Celiac) says:

    Hi Molly, I think it’s great that you’re not only enrolling, but that you’re also helping to spread the word about the study. I really wanted to enroll, but I learned that I live too far away from a study center to do so. This medication, ALV003, has the potential to lead to a better quality of life for many with celiac disease. Thank you for doing this for our community! And please keep us updated on how it goes. Also, will you ever find out at the end if you received the drug v. placebo?

    • Molly says:

      Oh, that’s a bummer! I’m sorry! Thanks for your comment and the good question. I don’t think that you ever do find out, but I’m not 100% sure. I have another appointment this week and will ask the study coordinator to confirm.

  6. Sharone says:

    Molly,
    I didn’t heal 100% (or as close as possible) on the regular gf diet even though I was super strict for almost THREE FRIGGIN’ YEARS!!! So I think many of us can’t heal b/c some of those gf foods do often contain just enough gluten to prevent it. Which is why Dr. Fasano put me on his gluten contamination elimination diet (read: HELL) which actually worked. They tested my blood before and after and did endoscopies as well. Now I’m back to normal gf eating and will have blood tested again next week to see if I’m able to continue this. IF NOT I WILL PITCH A FIT because I do not want to eat like primordial man for the remainder of my days.

    Wishing you improved health!

    • Molly says:

      What? Why wouldn’t you want that…? (Just kidding.) I hope everything checks out okay on your blood test. I’ve heard only good things about the results of Dr. Fasano’s diet (if not about the actual experience of it), but I so don’t want to go there because it practically requires meat-eating to get enough nutrients, with all of the main vegetarian protein sources off the table. It’s in the back of my mind to maybe try it someday, but I JUST DON’T WANNA. I’m really glad it worked (fingers crossed) for you, though!

    • Kaila511 says:

      Sharone, best wishes for a positive blood test! I totally feel for you!!

      • Sharone says:

        Thanks Kaila, and thanks Molly.
        Molly – if you can find a way to greatly reduce eating out and/or stick with the gf products that test down to 5ppm, plus rely on lots of whole foods for a while, maybe you can heal fully without having to go on his plan. Which I am very grateful for, btw. I just like to complain.

        Collard green leaves, Molly. They are your friend.

        • Molly says:

          I always get defensive at this suggestion, but the truth is that over the past six months or so I’ve slipped a lot; I go out for dinner or eat a chips and hummus meal about once a week. Otherwise, everything I eat is home-made, whole foods meals, though! For the first six months, I never ate out and ate only whole foods, but it was hard to maintain without results. It’ll definitely be my next step if this study doesn’t help me.

          For the study, I think they might actually prefer that I eat out and get cross-contaminated now and then…That hasn’t been said explicitly, but it’s obvious that it’d give them better data! And we know how scientists love their data.

  7. Kaila511 says:

    Hi Molly!

    The CeliAction study is so exciting (especially since you don’t need to reintroduce gluten to your diet. Studies like that to me sound insane). I hope you get the drug, but either way you’re doing so much to help the celiac community so thank you!

    I actually looked into the CeliAction study, but surprisingly the closest one to me at the time was in RI (from Boston), and I also move ALL the time. My first year with celiac disease, I set up 5 kitchens (and that doesn’t include hotel rooms on vacations). I just move A LOT. Oh, and the second reason is that I had a wide range of celiac symptoms that went away on a GF diet, ovarian cysts, GERD, etc. And, honestly, the problems I have left might not be celiac at all. I have some non-celiac autoimmune problems, so it would be hard for me to judge if they are celiac based or not!

    I’ve noticed that you’re looking into a lot of options! For my allergies, I got to an allergist/immunologist in Boston. She’s actually focused in pediatrics, but keeps her patients through adulthood. Oh, and I’ve heard great things about Dr. Fasano’s diet as well. I’ve never tried it though, but I must admit that I do make (most) of my own food and don’t buy too many prepackaged/processed GF foods. (But totally eat grains, etc.)

    Hope the study goes well! Can’t wait to keep following your journey! 🙂

  8. Anonymous says:

    Pin it brought this website to my attention. I find it extremely helpful.. I hav just been diognosed and on my GF diet for almost 3 months. I can’t get over the complexity of this condition. My diagnosis was determined thru a blood test…it tested very prominent…I hav not taken the endoscopy test…I am going to see how this goes. I am going to change dr’s and when I do I hope to get more info …Thank yu for this great page ☺️

  9. […] maze of insurance claims, referrals, and screwups. The premium we shell out to feel safe, and how long it can take to get better no matter how safe we’re trying to be. I could go on, and I bet you could, […]

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