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Everything You Ever Wanted To Know About Gluten Intolerance But Were Too Ashamed to Ask, Part One

Filed under: Disease Food

I’m not even confident on which end that came out of. –Melissa McCarthy as Megan in Bridesmaids

Hello! And welcome to the first post in a little series about gluten-free, vegan living. This is for everyone, and most especialiest vegans, going gluten-free for the first time and all those who could possibly benefit from reading about my experience of doing the same in the last three years.

I’ve learned from desperate private browsing sessions that there is verrry little information out there for people who might have celiac disease or, more amorphously, a gluten intolerance, or, even more amorphously, unexplained “stomach issues.” At the risk of sharing too much information with people who know me and read this blog, I will describe — in the least disgusting way possible! — my experience of discovering that gluten doesn’t agree with me (it’s a long story, actually! and interesting, I swear.), how I removed gluten from my already vegan diet, and what the consequences and rewards have been. Less in spite and more because of how embarrassing it is to talk about some of this stuff, I hope I can answer questions people only want to ask their very close friend, the internet.

Know that I’m using the Q-and-A format so that people can easily find this; I am not actually conducting sad, lonely interviews with myself.

How did you find out you have celiac disease?

Let me begin by saying I haven’t officially earned my celiac disease badge, and I’m just now sewing my gluten-intolerant patch on my vest (which is otherwise occupied by a great big vegan! patch). But more on the official status of my relationship to wheat later.

Early in the summer of 2009 — May, I think — I started to notice I was bloated, all the time, even when I woke up, having eaten a very early dinner the previous day. My high-waisted skirts suffocated me at the diaphragm, most of all after eating, when the bloating was quite visible, like a high-seated pregnancy in its fifth month. As proof, I wore a lot of tops from Anthropologie that summer. Following the bloating were other GI problems — food moving through my system at an uncomfortably slow pace, a constant feeling of fullness and hunger at the same time, frequent nausea — and general exhaustion (which could have been a result of feeling sick or more directly a result of the gluten itself). That Melissa McCarthy quote kind of sums up my GI state at the time at its worst.

To avoid doctors and invasive tests for as long as possible, I decided to try an elimination diet, removing foods from my meal plan for two weeks at a time to see if I felt better. Already vegan, I knew that several common allergens — lactose, dairy, and eggs — were not the problem. So I began with the foods I was most willing to give up: nuts and yeast. First I excluded nuts. No difference. Then yeast. This was harder because yeast is in bread, and I loved bread. I loved it so much I wrote blog posts about me dreaming of bagels. But there are a few good yeast-free breads out there, as it turns out, so I survived. I was especially hopeful about the yeast because I thought it might help eliminate some really uncomfortable yeast infections. (See, I told you this was embarrassing! Hi, Mom!) Two weeks later, no improvement stomach-wise or yeast-wise.

I had to move on to the foods that I was less willing to give up: legumes, fructose, sucrose, and (AHHH!) gluten. No change with legumes. The sugars were really, really hard to exclude; I can only compare it to becoming vegan and not even knowing what I shouldn’t be eating. Plus, no fruit, man! Sucrose was a little easier as I have lived without cookies for most of the days of my life. But neither exclusion made a difference.

And then, bread! One very large, Jewish part of me (my nose?) hoped I’d feel no change by avoiding bread so that I might continue to enjoy my morning bagel until I could no longer chew solid food. But the other part of me, a small 51 percent majority, wanted me to feel good again and, frankly, was starting to forget what it felt like to be anything other than stuffed up and tired. Losing bread was tough even so: emotionally because I was worn down from having tried every other potential allergen I could think of, and technically because I didn’t have a replacement for my main food group. I didn’t know that bread could exist without gluten. This was before gluten-free really took off as the fad allergy/cult it is today, before there was an entire section in Whole Foods or a full aisle (!!) in Fairway devoted to gluten-free foods.

In short, I did it — I lived a whole two weeks without my friends at The Bagel Store. This is already July ’09. And at the end of those two weeks, I observed a few changes: food was moving through my system a little better, and my painful cystic acne was lessening, a huge unexpected perk. I know, I know — you can’t remember me having bad acne, if you’ve known me for a few years. My skin never looked too affected because cystic acne isn’t all that visible; it’s mostly beneath the skin’s surface. But it’s painful and hot to the touch and often leaves scars regular zits don’t. My still-reddened chin bears evidence of this.

So this is how I began to learn that my body revolts against wheat proteins. Stay tuned to find out how I make it better, and then worse, and then better again.

8 Comments

  1. Comment by

    Rhea

    on #

    I went gluten-free about a year and a half ago, not because of celiac disease but to help my autoimmune disorders. Dr. Joel Fuhrman recommends that. I did have a lot of the symptoms you mentioned and if I ever cheat, I pay for it. Going GF has helped so much, I’d never go back.

    At first it was a bit tough, learning all the new “no-no”s on top of being vegan but it got easier as time went on. Now most of the recipes on my blog, The “V” Word, are gluten free and vegan. I have even learned to make gf ciabatta, french bread, pizza and most recently, Hamantaschen for Purim.

    There is so much controversy about GF diets, whether it’s just a trend, etc. but my experience says it’s life-changing and very doable once you learn and get the hang of it. Thank you for tackling this issue. Looking forward to reading more!

  2. Comment by

    Richard Morris

    on #

    Well. I’m Jewish of Eastern European descent, which also seems to be a factor. I’m hearing you loud and clear. After a lifetime of stomach issues (in my family it’s called a “nervous stomach) I finally quit gluten and noticed results in only 48 hours. Within two weeks my stools were gorgeous, no bloating, no gas, no heart burn and amazingly no fatigue and more energy than my 48 year old body and soul knew what to do with. That was four months ago and I am scheduled for a blood test in about two weeks. Even if nothing comes back conclusive, I will definitely stay off gluten. On two occasions when I had just a sliver of pie (I live in Holland, pie is a way of life here!), the next day I saw notable changes in my stool and had a “nervous stomach.” So that’s my experience. Oh, and I’ve been an ovo-lacto vegetarian for 22 years. Thanks for sharing, I’ll look forward to reading more.

  3. Comment by

    Stacy Malinow

    on #

    Please support my petition for the Girl Scouts to sell a gluten free and allergen free cookie. http://www.change.org/petitions/encourage-the-girl-scouts-to-sell-an-allergen-free-cookie

  4. Comment by

    Roseann Marulli Rodriguez

    on #

    Thanks, Sam! I’m just at the beginning of my gluten-free journey, so I’m looking forward to reading more from you and to finding my own way through this. Thanks for posting!

  5. Comment by

    Charly

    on #

    Would like to offer the UK’s Gluten free/Coeliac community FREE tickets to the UK’s leading Allergy Event http://www.allergyshow.co.uk/go/supervegan

  6. Comment by

    megan rascal

    on #

    This is everything I wanted to know! Thanks!

  7. Comment by

    Sam

    on #

    Rhea — I’m with you! Going gluten-free has changed the way I feel in an essential way. It’s not a fad for some of us.

    Richard — I didn’t know being Jewish/Eastern European was a factor. Hm.

    Stacy — THIN MINTS FOR THE LOVE OF GOD.

    Megan — I’m sorry. This is probably more than you ever wanted to know about me. From now on, I’m going to disclaim this at the beginning of all additional posts about my GI problems.

  8. Comment by

    Mike Lyons

    on #

    Thanks for sharing this story. I’m really enjoying your blog and I’ll add it to my reader. :)

    Mike

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