Why do we get celiac disease?

I know why I got celiac disease. Do you?

We all have our special origin stories when it comes to why we are the way we are. Humans love to reach back through the strands of our past and attempt to reweave them retrospectively into a narrative we can understand. “X happened, and Y happened, and Z happened” isn’t an appealing way to view our life story: it’s disorganized and random. “X happened, and therefore Y happened, and it all came to a head with Z” is neater and much more satisfying.

So, I know why I have celiac—or, at least, I like to believe I do. I’ve taken all my precious, faulty memories and molded them into a story that makes sense.

My Theory

It’s simple enough: I was born with the celiac gene and lived happily in my glutenous environment, eating whatever I darn well pleased, without so much as a twinge from my cast-iron stomach. Then, I lost sixty pounds in a year, messing with my gut bacteria in ways not even scientists understand. Immediately after I stopped losing and started maintaining, I got sick. Eventually, I learned it was celiac.

To me, the timing is too coincidental to be coincidence. Thus, with no hard evidence whatsoever, I’m convinced: I wreaked havoc on my body’s bacteria, then I gave them some gluten and ruined everything—all in pursuit of thinness. (How many pounds my body has reacquired in revenge is not an important part of the story.)

“But Molly,” you may protest, “I’m a naturally svelte god/goddess who has never actively tried to lose a pound in my life, yet I too have celiac disease. How can this be?”

If that’s so, then after mumbling something less polite, I would thank you for the insightful question, because it leads nicely into the second half of my post.

The Pie Theory

One of the best parts of the recent Columbia conference was Dr. Benjamin Lebwohl’s discussion of causal pies. This is a yummier name for a fundamental principle of epidemiology known as “the sufficient-cause model.” According to it, multiple risk factors for a disease come together in one person, like pieces of a pie. Once the sufficient factors (or ingredients) are there, the person gets the disease.

However, more than one set of ingredients can be combined to make a pie (as any gluten-free baker who has ever had to choose between all-purpose blends knows all too well). Similarly, most diseases have more than one sufficient cause; there’s more than one way to develop them.

For celiac disease to develop, two pieces of the pie must be there: genes (HLA DQ2 or DQ8), and gluten. But by themselves, they’re insufficient cause; almost a third of the US population has the gene and eats gluten, but most of them don’t have celiac. (There could be other universally necessary causes, but no one’s found them yet.) The rest of the pie needs to be filled in, perhaps completely differently for you and for me, with other causes.

causal-pies The other pieces might include:

  • early OR late gluten introduction by parents (which I have complained about before)
  • spring or summer birthday (because you probably started eating gluten in the winter, when infections were going around)
  • microbiotic dysbiosis (messed-up gut bacteria)
  • antibiotic usage (possibly insofar as it contributes to the above)
  • GMOs (but I doubt it. As Dr. Alessio Fasano pointed out, “There are no GMOs in Europe, but we still have celiac disease!”)
  • leaky gut (which Dr. Fasano talks up in his new book, Gluten Freedom)
  • headache medication (possibly because it makes your gut leak; the aspirin-based ones I regularly overused in high school before discovering caffeine are not included here)
  • other autoimmune diseases (though they may in fact be consequences of the same factors as celiac—pies rather than pieces)
  • excessive hygiene (which I’ve joked about before)
  • and so on.

Why all the theories?

It’s important to determine causes of celiac disease not only because humans hunger for coherent life stories, but also because discovering causes could help us prevent, treat, or even cure future cases. This is particularly crucial because celiac disease is increasing in prevalence.

Plus, differently constructed pies may require different treatments. The baking metaphor breaks down a bit here, but we know that some people take longer to heal than others, and that some people must adopt additional measures beyond the gluten-free diet to get well, while others get cross-contaminated regularly with no consequences. Maybe that’s because their identical disease has different causes.

Why do we get celiac disease? (It's all because of pie.)

Original photo of a probably glutenous lemon pie © speedbug | Flickr

Dr. Lebwohl did not make any jokes about a) the gluten content of causal pies, or b) celiac disease being “easy as pie” to develop, so please consider those bad jokes my contribution to the scientific conversation.

Now, it’s your turn to contribute: Why do you think you got celiac disease, or another GRD? Do you have a pet theory about why they are increasing in prevalence?

This is the latest installment in my Sprue/False series of simple but difficult-to-answer questions about celiac disease. (See also Is a Gluten-Free Diet Good Enough? and More on Drugs.) By the way, although “Why do we get other gluten-related disorders?” is a great question too, I focused on celiac because, unfortunately, we’re even farther from answers when it comes to other GRDs.

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21 thoughts on “Why do we get celiac disease?

  1. Mary Kate says:

    Bad jokes really are a necessary component of life. If we didn’t laugh, well, it would be less than pretty.

    I don’t know why I got celiac. Technically, I don’t know if I do have celiac or NCGS. I’m not sure it’s worth paying for gene testing that NONE of my doctors here know how to read. But from that list, I’d say antibiotic use lead to lack of gut bacteria, which long term lead to food sensitivities and allergies, and maybe celiac. I had lots of ear infections as a child, but was then put on long-term antibiotic treatment for acne as a teenager. Which didn’t really work and appears to have messed up my guts permanently.

    I’m glad that they are looking, but I can’t say I’m holding my breath waiting to find out The One True Reason at this point. Instead, I’m hoping Denise can maybe teach me to make gluten-free pie crust (I could never make the gluten-containing kind, either), because I really like pie.

    • Molly says:

      That story certainly sounds plausible to me. I know none of us will probably ever figure out the exact reasons we got celiac/allergies for SURE, but it’s nice to have a story.

      My family made gluten-free pies for the fall holidays two different ways—one was following Kelli and Peter Bronskis’ method in Artisanal Gluten-Free Cooking, and the other was a mix (either Bob’s or King Arthur). They were actually both quite good. I think pie crust is a bit tricky in general, whether gluten-free or not. All the ingredients have to be cold, and you have to not warm them up too much mixing them together, blah blah…It’s enough to make you see why Casey prefers cake!

    • denisedaniel says:

      Remember that whole having to use rice paper for the samosas thing? Pie crust is still pie in the sky…bwahaha!

  2. Casey says:

    GREAT POST! I’m going to email it to my parents for sure 🙂 This has been a question that I’ve tried to stop thinking about since I was diagnosed. From the little I’ve heard my doctors say about it, usually the body needs to go through some sort of trauma to be triggered. That’s what makes my situation so weird! Because, really, I was just going through regular life, no real issues, and my dad (who we found out also has the gene) can eat gluten just fine and has suffered some major physical trauma from 25+ years in the Marine Corps. Life is funny that way.

    Honestly, I don’t really have much to pinpoint. I also have fibromyalgia (another autoimmune disease) so that may have stacked some cards against me. Nowadays, I basically shrug and blame Lady Luck. And then I move on with my life and eat some gluten free cake (because I don’t like pie – maybe this is the reason!)

    http://caseythecollegeceliac.blogspot.com/2014/04/gluten-free-and-dang-lucky.html

    • Molly says:

      Thanks, Casey! It’s hard NOT to think about it, but it’s definitely silly to stress over trying to figure it out. I’ve heard about the trauma hypothesis too, though who knows how true it really is. Obviously stress wreaks havoc on the body in all kinds of ways, but that doesn’t mean everything’s always due to stress (though of course it’s what I think happened to me…but that’s basically my personal mythology, with no basis in scientific fact).

      You have a good attitude for dealing with your bad luck. To be perfectly honest, I like cake better, too!

  3. This is a great post, Molly, really thoughtful and funny. I much prefer the term causal pie, also. And your pie explanation and diagrams are really a great visual. My daughter has the genes and had gluten (lots of it) and a spring bday. We think at age 2.5 as it neared winter she caught a virus, bc over the winter she became emaciated and sickly, so by the spring she was suddenly underweight (after being in 90s %) and very ill. We went to the ER the day before her 3rd bday and after a (not) fun day of invasive tests (including blood yet no test for celiac, thanks a lot) we were sent to a GI for more bloodwork and then voila, diagnosis.

    Now my son is 2.5 and we wonder what will happen or not with him. We haven’t tested his DNA yet so we may do that since it would be nice to rule it out…or not.
    -Dana

    • Molly says:

      Thanks, Dana! I’m glad you enjoyed the post. If only all science could be explained by way of pie, I might have managed to make something of myself other than an English major.

      The pattern with your daughter does sound a lot like the spring birthday theory…here’s hoping your son has better luck! My older brother got the DNA test and found he doesn’t have it (phew—three out of three celiac kids in the family, and I’d have had to start pointing fingers…).

  4. lisamims says:

    I’m wondering if they think stress has anything to do with it? I blame celiac genes and law school.

    • Molly says:

      Sounds plausible to me! Yes, I’ve heard the stress (/trauma) hypothesis, though there seems to be no evidence on it. It’s tricky to study, I think, because what constitutes trauma/extreme stress is so subjective. Apparently head trauma does not appear linked to celiac disease; I definitely remember seeing a study about that once.

  5. I haven’t really given it serious thought but seeing you mention antibiotic use here makes me wonder about something. When I was a teen in mid 80’s they treated severe acne with A LOT of antibiotics. I stayed on an antibiotic for eight solid years…every single day for eight years. I had the most horrible yeast problems and I don’t just me the female type. I had thrush more times than I can remember but not once did any dr ever say ‘hey stop it with the antibiotics they’re the worst thing in the world for yeast’. I wonder now if the antibiotics and the havoc they reeked on my gut back then played a role in the celiac years later.

    • Molly says:

      Wow, that’s a long time to be antibiotics! Yikes! I guess this was before the medical community had cottoned on to the dangers of overprescribing them. Could very well be that was involved. Honestly, my scientist sister seems to think that all the excitement about the microbiome is overblown, but I’m totally on board with blaming everything on bacteria/lack thereof.

  6. denisedaniel says:

    I wonder about the same thing my food allergies. What did I do? Could have been the 9-10 ear infections, bronchitis and strep infections a year, until I turned 18 and could move off the farm and far, far away from my environmental allergies. Or could have been the stress of law school and ten years of private practice doing divorce and custody. Or it could be genetic, because there seems to be some weird stuff going on in my family tree and branches. Or it’s because I grew up within 25 miles of a nuclear power plant. Or my dad used to weld on nuclear power plants until he got too hot (radioactive) to do that when I was six years old. Or that my my mom fell off a snowmobile going 30 mph when she was six months pregnant with me (that also may explain a few other things, I’m missing a rib and I have a couple fused vertebrae). It’d be nice to have some actual science, but I suppose that’s too much to ask for 🙂

    • Molly says:

      You have lots of great possible origin stories, wow! Also, that’s two votes for law school. Wonder whether lawyers are unhealthier on average than the general population?

  7. Sharone says:

    Molly – wonderful site, great sense of humor! I feel like there’s some sort of perfect storm mixed in with the right genetics, and it’s different for every person. Like I was on tons of antibiotics as a child (thanks Strep) and probably lived in a too-clean environment (thanks Mom) (and thanks Windex). My daughter was diagnosed with celiac disease and she hasn’t taken a lot of antibiotics. And my house is pretty much filthy so I did great in that respect! Yet she seemed to have developed it much earlier than I did. Confounding.

    • Molly says:

      Thanks, Sharone. I just checked out your blog too and love your style! I’ll definitely be following from here on out. Great post about the mushroom abusers. I worry about stuff like that at the grocery store all the time.

      You and your daughter probably have different pies…that’s all the answers I’ve got, sadly!

  8. Love this, Molly. I was on a webinar last night about leaky gut and I was astounded by all the people who had autoimmune issues like I do. I often wonder did untreated celiac disease cause my other issues (eosinophilic esophagitis, eczema, multiple food allergies, psoriasis, endometriosis, fibroids, gall bladder disease, diverticulosis, etc.) or is my autoimmune system just faulty and I would have developed these even without celiac disease. I pray that my son who has celiac doesn’t follow my health path!!

    Like you and people here, I can identify key events that led to my celiac and leaky gut. First, pregnancies (severe preeclampsia), then my father died (stress), then I took antibiotics and NSAIDs and prescribed pain killers for debilitating cramps from endometriosis–and maybe just maybe I drank wine while taking those painkillers–and of course I’ve got the genes. A perfect storm is right.

    Thanks for always teaching me something and for making me laugh!

    • Molly says:

      Thanks for your comment! Learning and laughing is what I always visit your blog for, too, so I’m glad you were able to get it from mine. 🙂

      That’s quite a perfect storm, definitely. And fingers crossed that your son will get off a little easier than you’ve had it! I predict leaky gut is going to get more and more research attention. It’s too bad the name sounds a bit “woo woo,” you know? I think some people write it off even though it’s totally legit.

  9. […] found this article from A Sprue Story very interesting: “Why Do We Get Celiac Disease?” This is definitely an interesting topic to think about and discuss, though we may never know […]

  10. rachelmeeks says:

    I think I know how I got IBS, which is really just a word that means “undiagnosed tummy problem.” My teeth were really weak after I had been on pain medication regularly for endo, and as a result I got a very bad tooth infection. Life-threatening, actually. My face swelled up and almost closed my throat and I had to have emergency surgery. The before and after of that I wasn’t eating much because my face hurt and chewing hurt and I was just put off by the whole food thing. I had been at a healthy weight and over the course of a few months I shriveled down to an unhealthy anorexic look. Oh, and the whole time, I was on antibiotics for the infection. It was a perfect storm for my system and my tummy hasn’t been the same since!

    • Molly says:

      That sounds really awful to deal with, and I’m sorry about the long-term consequences it seems to have had. 😦 Also, totally feel ya on “undiagnosed tummy problem.” It’s exactly how I feel about IBS, and a lot of doctors “diagnose” it extremely lazily. It’s a handy way to stop looking for what’s wrong and how to treat it.

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