Do you get “the celiac bloat”?
Spend enough time in the gluten-free blogosphere, and you’re sure to find posts about bloating. Many consider it the first sure sign that they’ve consumed gluten. Some even share photos, as though to prove they aren’t imagining things (which, no doubt, many of them have been told).
Though I won’t be posting a photo, I wanted to share a bloating story of my own. This one’s from the archives: an email I sent to my dad back in 2010.
The only context you need is this: my junior year of college, I lost a third of my body weight. (On purpose, although I kept it going a bit longer than I should have.) Just weeks after hitting my “target” weight, I became very ill.
By the time I wrote this email, I’d started to experiment with what I now see as Band-Aid management strategies. They were helping, but not entirely—and not at all with what seemed to me the worst part.
. . . the thing that’s most upsetting is that my belly is constantly swollen and bloated, and gets progressively worse throughout the day. After I worked so hard to get in shape, now I can’t wear my new clothes because they’re too tight. I haven’t had any days for a while where the pain got as bad as it did those few days, so I’m really only dealing with mild discomfort most of the time (although sometimes pretty bad discomfort by the end of the day). But I just feel depressed and embarrassed all the time about the way I look.
I guess you’ll probably think that I’m noticing it more than other people are, and that’s probably true, but if I wore my fitted shirts people definitely would notice. By the end of the day my stomach is often so distended that I literally look several months pregnant. . . .
I’m afraid this will never go away no matter what I try and I’ll never be happy with the way I look or feel ever again. And I’m trying to gain some perspective because I know I could have far worse troubles, but it just seems so devastatingly unfair that at the time in my life when I should be my most healthy and look my best, instead I get this.
Note: This was originally all one very long paragraph. I’ve made cuts and added paragraph breaks because it was utterly unreadable. Sorry, Dad.
When I wrote this, I was strength training several days a week, “doing abs,” and running almost daily. To have this uncontrollable bloat “ruin” those efforts was frustrating, especially since I was more image-obsessed then than I’ve been before or since.
Back then, I felt I would rather deal with mild and increasingly worse discomfort every day possibly forever than be bloated. It was more important to me to look good than to feel good. Sad, right?
Since then, some of my other symptoms have improved. My weight has gone slightly up and down; I’ve worked out more or less consistently; and I’ve eaten more or less cleanly, on a few different diet plans (omnivorous, vegetarian, low-FODMAP, and now gluten-free). But the bloating has continued. I both feel bloated—that awesome “please just pop me now” balloonlike feeling—and look bloated—just a little, usually, but sometimes a lot.
See? Balloons make him sad, too.
Photo © Jorn Idzerda | Flickr
I’m in a healthier place now than I was then, body-image-wise. But you know what? I still find the bloating unfair (if not devastatingly), and I still find it depressing. Some days, I still want to just stay in bed.
Bloating is one of the symptoms that consistently pops up in descriptions of celiac disease, perhaps because it’s less graphic than the alternatives. But it also affects 10 to 30 percent of the general population, often for unclear causes.
Some people don’t think of bloating as a big deal. “Oh, everyone has that from time to time,” they might say (as a friend did to me back when I first got sick). Protesting that it’s different when it’s every day may or may not penetrate, but it’s true: it is different. Sure, in comparison to other symptoms—including my own!—bloating is mostly just a nuisance. But when it happens every day, it gets to you.
These days, I think of bloating as just one more frustrating aspect of a frustrating illness. One more daily bit of proof from my body that I’m not the boss of it.
One day, maybe, I’ll prove it wrong.
What’s your least favorite symptom of celiac disease or gluten sensitivity? Any good “bloat begone” tips to share?
Based on a Sprue Story 
Well, I had to go back and see what I wrote in reply to your email from 2010, to see if I made a complete hash of the response. Fortunately (phew!) I don’t think I did too badly, and there were a few items I suggested then that I think you still ought to consider.
Things you have done that I suggested:
√ See doctor (even if the Chicago ones were ignorant, you eventually got one who at least administered the right test)
√ modify diet and eliminate wheat
Things to consider (further):
• This may be more than celiac; your gut flora/fauna may still be out of whack, and probiotics may still be worthwhile
• Eliminating most dairy except for yogurt (I have developed a fondness for Greek plain, but some may say the sourness just fits my temperment!)
• Eliminate vegetables likely to promote gas/bloating: most legumes, broccoli/cauliflower/etc.
Granted, with a near-vegan diet, that doesn’t leave you with much but rice, yogurt and greens, but maybe that is worth a try.
Hi Dad, just seconding the comment below about how awesome you are. I’m so glad I had you and Mom to count on while I was going through all of this. 🙂
I’ve been noticing cabbage, cauliflower, and even my beloved chickpea flour and popcorn seem to exacerbate the bloating, but since I usually eat those at dinner time I don’t care that much about being bloated afterwards because I can just go to bed, ha! I’ve been trying to eat more yogurt but I don’t like it that much. It’s just so yogurty.
Hi Molly, I love your blog. I have celiac too and a whole host of other problems because it went undiagnosed for so longer (thyroid, liver, heart, and colon autoimmune disorders) I have made such huge shifts based on elimination protocols to fund out what I am sensitive to, and the bloat is gone. I do this for work (I am a psychotherapist and holistic nutrition coach specializing in food intolerances and gluten problems) and do with my clients what I did for myself. For 30 days, I took out the most common offenders, and then reintroduced slowly to see what was causing pain and bloating. The most common offenders are grains, dairy, soy, corn, sugar, caffeine, eggs, and FODMAPS foods. Avoiding FODMAPS alone made a HUGE difference for me. Here is a good link for that: http://www.eat-real-food-paleodietitian.com/paleo-diet-and-fodmap.html
Feel free to email if you have any questions!
Ali
Hi Ali, thanks for commenting! I’m actually quite familiar with FODMAPs. Back before I got diagnosed with celiac, I tried a low-FODMAP diet and saw results at first, but then I added back in some things and felt worse immediately…and after that, even when I went back on the very strict diet, I never felt better again—though in retrospect part of that must have been because I was still eating Cheerios, which are okay from a FODMAPs perspective but bad from a gluten-free perspective. And I also work on books about the low-FODMAP diet during my “day job.” So it’s really funny you brought it up!
I’ve thought about going low-FODMAP again, and if my symptoms persist for too much longer, I’ll probably try either that or the “gluten contamination elimination diet.” The thing is, I’d like to stay vegetarian, and both of those diets are a lot harder (though not impossible) for vegetarians. Plus, so many of my favorite foods are high-FODMAP that I just hate the idea of giving them up! For now I’m going with keeping my fingers crossed that I’m just a slow healer…and putting up with the bloating in the meantime.
I’m so glad to know that there are nutrition coaches out there who are counseling their patients on FODMAPs, though. Even though I’m dragging my feet on doing it myself, I see it as a really important step forward in IBS treatment and I hope that the people who need it will discover it from people like you!
Thank goodness I’m not alone with this!! Right now, I’m the skinniest I’ve ever been, and not in a good way. I weigh about 87 lbs at 5’3″ because of continual stomach problems from celiac disease. No matter how skinny I am though, my stomach still looks bloated to me. Other people say they don’t notice, but I hate looking down and seeing a big stomach with chicken legs and arms. So glad to know that others are suffering from the same bloating and I hope that we all figure out a cure soon!
Yes!! I actually gained a couple pounds and feel a little better about the proportionality thing now, but back then I was really freaked about it. (Way more freaked than I should have been…I think it really is true we notice it more than others do. If that statistic about how many people experience bloating is true, and if it were super visible, we would see bloated-looking people around us all the time! But actually it’s rather rare that I look at someone who seems average or slim bit bloated. And even when I do spot someone where I think I notice it, usually I still think that person looks good and feel encouraged by it.) Good luck working it out though–and everything else–because it’s a huge pain.
I haven’t really had problems with bloating in the past, but I’ve noticed it more lately. I need to start a food journal. As of right now, based upon the past few weeks, I’m wondering if mine is from consuming gluten-free oats. I’m going to stay off of them a few weeks, then try them again. I’ve always been pretty sporadic about consuming gluten-free oats, so I’ve never looked for or noticed a pattern. Last weekend, after making oatmeal cookies, I had several days of abdominal discomfort and bloating. Anyways, I’ll let you know if I figure out mine.
Figuring out our bodies is so exhausting. I wish there was a way to plug our body in and get a print-out/read-out of exactly what it wrong!
I’ll be curious to hear what you figure out vis a vis oats. I’m still avoiding them myself because I don’t consider my GI symptoms to have completely resolved. I miss them though! Oatmeal scotchies were my favorite cookies…will have to try them with quinoa flakes sometimes. Good luck targeting the source! Bloating is the worst.
Oh and YES to wishing for a print-out. I would love that, even if mine would probably just read like a long line of error messages.
Yes! Me too. I am always bloated. I do feel a lot better without gluten, but I still look bloated (pregnant)! It’s so infuriating. I am also thin and fit, so it is really noticeable, leaving me embarrassed and with low self esteem. It affects my confidence and energy levels. I’m on a mission now to finally really figure it out–chronicling it in my new blog “My Modern Gut”
Thanks for sharing your blog (which I’ve been checking out) and your story! Hope you figure it out, and me too! UGH, bodies suck.
Hi Molly, The bloating can be a real nuisance. I have been pregnant 5 times and at times I bloat and end up looking exactly like I do when I am 4 to 5 months pregnant!!
My worst culprits are GF grains, especially quinoa. I’ve noticed things have gotten markedly better since I cut out almost all processed foods and grains. But, as you’ve probably already picked up on, it seems that all of us with Celiac Disease have very individual responses and reactions to other foods. There is a ton of trial and error during the first few years (and in my case first 3.5 years!)
I haven’t been able to commit fully to FODMAPs because I feel like my diet is already too restrictive and I love too many of the fruits and veggies that are no-nos on it. But, I have a dear friend with IBS and this diet has been a lifesaver for her.
Jess
I’ve noticed quinoa too! I think this is the first time I’ve ever heard someone else say it bothers them. Do you have any idea what it would be in quinoa that does it?
Since I don’t have coeliac, and am just sensitive to gluten, I’m sure my experience is very different. I cut out lactose too and found that fixed everything right up for me. I am truly thankful for the choices I do have regarding food. It does seem that if you FODMAP and are veggie that’s very tricky indeed. Even though I didn’t have to do it, I was preparing to eliminate foods up and until I worked out the cause of my problems. In the meantime, can I just say, how awesome is your dad?!
I say it all the time, so why shouldn’t you? 🙂
I tried lactose-free at the beginning of GF and have been slipping back into eating it (actually, considering how much ice cream I consumed this summer, I’d say I’ve officially slipped). I didn’t notice cutting it out helped much, but I’m sure eating it doesn’t help either. Sigh. At least they make vegan/lactose-free ice cream!
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