The Curious Coconut / TheCuriousCoconut.com

My experience with gluten sensitivity

I have had a number of readers reach out to me with questions about wheat and gluten. Because of their questions, I have made it a priority to research the scientific literature for some articles for my site. I've been hard at work at that, and am very close to finishing the first article. But first, I wanted to share my own experience with cutting out wheat and gluten, so that my readers understand why it is such an important topic to me.

Discovering My Gluten Sensitivity

If you have read my What I Eat post, then you know I think it's a good idea for just about everyone to try a gluten elimination/re-introduction trial over about 2-6 weeks. I hint at my own experience with doing such a trial as having been pretty horrible. Let me tell you just how horrible.

When I first went Primal, my goal was follow it as close to 100% as possible for 7 weeks. Everything was great for the first 3 days, but then travel forced me to fall off the wagon. I was gone for 5 days, and when I was back home I still couldn't go all in for a couple of days longer, because I had to wait for the weekend farmer's market to stock up on good meats & veggies. Once I was back on the Primal wagon, everything was going wonderfully -- the bloating was gone in my belly, no more heartburn, tons of energy, sleeping better. Then, 4 days into this effort, I stupidly cheated on fried battered conchs and fresh made bread slathered in herbed butter at a restaurant. This was 15 days after first cutting out gluten, but I had had small amounts while traveling (which made me feel sluggish and icky, but didn't make me sick).

After that cheat meal, I felt absolutely HORRIBLE. Lethargic, major brain fog, grumpy, splitting headache. I woke up in the night with terrible diarrhea, and the next morning, I had what felt like a migraine. My head hurt so badly that I didn't want to move, and I was extremely sensitive to light. My stomach also felt turbulent, and I continued to have diarrhea throughout the day. I was so sick that I had to miss work that day. From that point on, I was committed to NOT let myself eat wheat anymore.

But, the problem was, I craved it. Big time. I had dreams about eating wheat, for goodness sake! I think the cravings actually got worse when I realized that I couldn't cheat on wheat. It was simply not an option. I was able to abstain for the remainder of my strict 7-week trial period. But, eventually, I caved. More than once. Over the next 6 or 8 months, I experimented several times with various things. Bagels, croissants, cookies, pizza, beer. Each of those experiments ended in me vomiting within 30 minutes of ingestion and with diarrhea for 24-48 hours afterwards. Plus, the horrible headache, grumpiness, lethargy, and brain fog. And if all that wasn't enough, I got a bonus acne breakout on my face each time, too. 

The last time I intentionally ate gluten, the mental/cognitive effects were so profound that I couldn't speak. I tried, but couldn't. It was one of the scariest experiences of my life. And I was so completely lethargic, just zapped of all my energy, that I had trouble holding myself up. I just wanted to lie limp on the floor (or actually, on the toilet, since I was vomiting). My husband almost rushed me to the emergency room, because here I am, limp as a wet noodle over the toilet, vomiting, unable to tell him what's going on.....he thought I had been poisoned or something! Thankfully, it was only that severe for a brief time, maybe 10-15 minutes, but I still suffered the rest of the day (and into the next day) with all of the symptoms I listed above. 

I've been strictly gluten-free now for about 2 years (I forget the exact month of my last experience). It's astounding to me to look back and see just how strong of a hold wheat held over me. Even though I knew eating it would make me incredibly ill and ruin my day, or possibly ruin two days, I still kept testing it. Sounds kind of like an addiction, huh? That's exactly what it felt like. And, to be honest, it was more painful, stressful, and difficult for me to stop eating wheat than it was for me to quit smoking. I'm not exaggerating. 

Gluten-Free in the Media

In these past 2 years, gluten has been getting a LOT more attention in the media. On the Internet, in books, from doctors, in magazine articles, on talk shows. Most alternative medicine websites will have information about gluten sensitivity. Heck, even Dr. Oz is talking about it. But one of the loudest voices has been Dr. William Davis, author of Wheat Belly, published in August 2011. A lot of the information you can find online now about wheat and gluten is just reworded and repackaged from what is said in that book. There are examples of this all over the place online.

I was really excited to see people with credentials writing about wheat and gluten sensitivity. And I was excited to see that they were backing up statements with references to the literature. But, silly me, I never really cross-checked those references thoroughly to make sure they were valid. Now I have, though, and I have seen something very upsetting: many of the claims being made aren't supported by the scientific evidence. I've seen papers used as citations for articles, and upon reading the cited papers, I found that they have NOTHING to do with what is said in the article! 

I'm going to be really careful with what I say on this matter. I do not want to try to discredit anyone. The book Wheat Belly and Dr. Davis's blog both have some very good information, but they also have some misleading or incorrect information regarding the hard science on how and why eating wheat can negatively impact health. In my articles, I'm going to make sure I give a fair description of the current state of knowledge based on the literature, and not make exaggerated claims or misleading statements.

Misleading claim #1: wheat is addictive in the same way as heroin

I just told you how my own experience with going gluten-free was like breaking an addiction. In fact, it was worse than quitting smoking. How gratifying, then, to see various articles popping up claiming that wheat is addictive in the same way as heroin. Of course I wanted to believe it! Is it really true, though? Does it have any basis in scientific fact? Read my analysis of this notion in this post. Spoiler alert: it's not.

Before I go, I want to say that I don't want anybody to get the wrong idea that gluten-free eating is just some kind of fad that isn't justified by the scientific evidence. That's not the case at all. I want to very briefly discuss some recent literature that I think validates trying a gluten elimination/reintroduction experiment.


Non-Celiac Gluten/Wheat Sensitivity

Very recently, non-celiac gluten/wheat sensitivity has been accepted as a distinct clinical condition, separate from wheat allergy and celiac disease. A study from Dec 2012 estimates that 1/3 of people suffering from irritable bowel syndrome (IBS) may actually just simply be undiagnosed non-celiac wheat sensitive individuals (source). A study from June 2012 estimates that 10% of the population may suffer negative health effects as a consequence of gluten consumption, either due to wheat allergy, celiac disease, or non-celiac gluten sensitivity. The same study also estimates that of the people who report suffering from gastrointestinal symptoms after eating gluten-containing grains (wheat, barley, rye), only 17% have celiac disease, 20% have an allergy to one or all of those grains, and that a whopping 63% may actually be non-celiac gluten sensitive individuals (source). What is really incredible about that last statistic is that up until only very recently, if you went to the doctor complaining of IBS-like symptoms and then got a workup to test for celiac disease that came back negative, the doctor would tell you you had no reason to avoid gluten, to go ahead and keep eating it. This was because people used to think it was a bunch of hooey that gluten could be damaging to non-celiac (or non-allergic) individuals. It's really staggering to think about all the needless suffering this advice probably caused. 

Here's the thing about non-celiac gluten/wheat sensitivity: the only way to find out if you have it is to do a gluten elimination and reintroduction trial. If you have alleviation of symptoms during the elimination phase, that's a pretty good indication that gluten was the culprit. But, if upon reintroduction of gluten, you have reemergence of the symptoms, that's concrete evidence that it's gluten's fault. Or, actually, a more accurate way to word it is to say that you've got concrete evidence that something in wheat, barley or rye is at fault --- not necessarily gluten. The Dec 2012 study I cited above calls it non-celiac wheat sensitivity, instead of gluten sensitivity, since it has yet to be proven that it is specifically the gluten in the grains that causes problems in non-celiac patients.

Have you already tried a gluten elimination/reintroduction experiment? Are you interested in trying one? Let me know what you think in the comments, and thanks for reading!

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