After spending nearly two years working for an all-raw completely gluten-free vegan retreat center in Arizona, I had effectively stopped eating all gluten. After a year or so experimenting with eating some gluten since I left the center, I’ve still had a hard time allowing myself to eat gluten when gluten-free options are available. Many health circles promote a gluten-free lifestyle pretty heavily. It’s become trendy to eat gluten-free, and frankly, that concerns me. I have mostly cut gluten from my diet, but there isn’t really research out there effectively showing it’s not suited for the average person. I’ve been wondering: have I decided to eschew gluten without really questioning whether research shows it’s better to go GF without diagnosis of an allergy or celiac?
In the past few weeks, I have been gently coercing myself to try foods containing gluten. A little wheat-containing fake meat here, a little piece of bread at Vedge there. I’ll admit, even dabbling in gluten territory has been kind of tough for me emotionally. It’s been labeled an “unsafe” food by the medical doctor I worked for at the center, and as someone with a history of disordered eating, I’ve worked hard to move beyond labeling foods as “good” and “bad” (purely from a nutritional standpoint. This doesn’t apply to animal products, because I acknowledge that they’re foremost horrible from a cruelty standpoint).
I spent years studying with a doctor who said gluten would eff you up, and I’ve read enough Kris Carr and Mind Body Green blogs to see why it’s just cooler to avoid gluten. But sometimes I take a look at JL Goes Vegan, or a post on Choosing Raw that includes a gluten option, and I am faced with the question: am I really avoiding gluten because I feel kind of icky physically after eating gluten, or is it emotional, or both? I think these are important questions to ask ourselves, regardless of the food items in question. Our emotions are certainly tied to our guts–scientific studies have shown that the bacteria in our guts can influence our emotions in big ways–but there isn’t enough scientific evidence to suggest that those without intolerance to gluten need to forgo it, and it’s so plentiful in many vegan foods, it seems a shame to tell people to avoid it altogether and push them towards gluten-free products, many of which are not vegan.
I’ve noticed many so-called health-oriented vegans moving away from veganism because while being a gluten-free vegan is certainly doable and even easy once you get the hang of it (If you’re a gluten-free vegan, I highly recommend the Manifest Vegan blog!) it adds yet another set of “must-do’s” and may make veganism feel more restrictive to certain folks. High raw seems like a great option for folks who want to eat raw food but don’t want to be all-raw; gluten-free, as in “you must not eat anything with gluten,” may push would-be-vegans off the path. Nutritoinist Ginny Messina discusses the importance of vegans encouraging diverse food choices in their budding vegan friends and loved ones, and I agree with that.
I’ve got one wacky food allergy that I am already aware of (no testing needed)/ I’m the only person I know who gets Angelina Jolie lips and breaks out in hives when I touch or eat mangoes (it’s a shame, I know–they really are delicious). It’s not inconceivable that I’ve got a gluten intolerance given that eating gluten sometimes makes my tummy feel weird, even in small quantities. But, I’m willing to get tested to find out for sure what’s going on. Even if I do choose to avoid gluten after testing negative, that will at least be a more informed choice. While I believe that we should honor how our bodies feel above test results, I really am curious whether my outsized fear of gluten is just that–a fear–or if it really is rooted in a biological issue.
Have you ever considered cutting any vegan foods out of your diet completely, even if you haven’t been diagnosed with an allergy or intolerance? I would really love to hear from you in the comments.
Thank you for reading. Stay tuned for the results of my gluten tests. xo
queerveganfood.com 
I think the best thing is that you have the courage to find out exactly what is indeed happening rather than guessing. Everyone is different! Luckily, you’re an amazing gluten-free chef!
Thanks, Court. Ultimately, I think it is a personal decision and whether or not I stay mostly or all gluten-free, I always think data is a good thing.
Very thoughtful post! I cut out gluten as the result of a diagnosis: candida. Gluten is just one more potential strain on the immune system. Even though I’ve never been formally tested, I have a clear correlation of my own experience: when I used to eat gluten, I would feel really awful (bloated, pain, gas, etc, the whole thing) for a day or two until things subsided. Then again, I suppose the symptoms could have been caused by something else. . . .but at this point, I’m not sure it’s worth it for me to eat gluten again just to find out.
I am one of those people who doesn’t find it difficult to stay away from gluten at all, and all my recipes are gluten-free. I was never a big “bread person,” so I totally don’t miss bread, and pretty much anything else I used to like with gluten (muffins, cookies, pizza, etc), I can now make in a yummy whole-foods, gluten-free version, so I never feel I’m missing out. The only time it’s a drag is when I go out to eat with friends or eat at friends’ places and they don’t have GF options.
Having said all that, i totally agree with you that GF is becoming (or has already become) a fad, and that not everyone needs to follow a gluten-free diet. I believe that gluten-full foods are just fine for people who are not sensitive to gluten, who have healthy digestive systems, etc. Eschewing gluten just because it’s trendy doesn’t make much sense to me, and gluten can be a healthy option (eg, seitan) for vegans.
Thanks for sharing this, Ricki! Yeah, I guess anti-candida is another great reason to eat a GF diet. I don’t miss bread or gluten either–that’s the funny thing. I’m kind of taking on this testing to challenge myself to find out what’s really up with my own body rather than following someone else’s advice, if that makes sense?
Other health conditions like Autism, RA and also people with Lyme disease are told not to eat gluten even though they do not necessarily get gut symptoms. I think there is the link with autoimmune stuff but also that it’s inflammatory and feeds certain yeasts and bacteria.
I am all for testing, though I must warn you that you’ll have to reintroduce a lot more than a nibble here or there for the test to be effective, Sarah! I’m working with a GI doctor right now, and indeed, you must be eating it on the reg for a true biopsy to be accurate.
I think testing is the way to go. When I was truly suffering from my IBS, everyone and their mother tried to convince me that gluten was the issue. I never felt any issues from gluten (indeed, Ezekiel bread was always a guaranteed “no bloat/no pain” food), but then, I knew that one can have an immune response without overt symptoms. So then I cut it out COMPLETELY, as instructed, only to experience no benefit. Finally, I reintroduced it entirely, and got the blood test. The blood test has only about 75% accuracy, but I was inclined to trust it when it came back negative for celiac sprue.
I make nearly all gluten free food for CR, only because I grew exhausted of constantly modifying for those who requested it, and also because I like proving to the world that GF and vegan is more than doable. That said, I do consume barley, occasional sprouted wheat (ehmer wheat if possible, rather than dwarf), wheatberries, and oats that are not certified GF, and I’m glad I don’t have an allergy or intolerance, because I can travel and dine out without worrying about cross contamination or having to find both GF and vegan options: if it’s a vegan hummus panini, great! I also really do prefer whole wheat pastry flour for baking, though I can and do modify.
I don’t believe that gluten is harmful to my health, but I do have strong feelings about dwarf wheat, which I think is a big problem for a lot of people, and I try to avoid that when I can. I recommend avoiding it for IBS management, for sure. But per the example above, if a sandwich is what’s on a vegan menu, then I’m getting a sandwich.
If I were you, I’d want to the scientific facts behind the grounds for your avoiding gluten. Testing is not perfect, but it’s not meaningless, either, and it’s the only true way to figure out how your body responds. So, enjoy some bread, get tested after a while, and see what’s up. I’m all for gluten free eating when it’s necessary, but agree with Ginny that avoidance wholesale is not necessary for a great many people. Knowledge is power.
xo
Gena: “Eating gluten on the reg” – this made me laugh out loud. Thanks for the good advice to dabble in doses larger than nibbles before getting tested. I appreciate you writing all of this and sharing your story. I love this line: “Testing is not perfect, but it’s not meaningless, either, and it’s the only true way to figure out how your body responds.” I think sometimes there’s a tendency to say, well, this test (whatever it is) isn’t a perfect indicator, so let’s not test at all, but I agree with you, there seems to be value in getting tested (which is why I’m going to go for it). I am embarrassed to admit this but I had no idea about dwarf wheat vs. ehmer wheat before you mentioned it. I guess at the Tree they served raw “bread” made from sprouted kamut, and I’m familiar with that, but not these other varieties. I’ll do more research! Thanks for your insights.
Kamut and spelt are cousins of wheat (not suitable for those with gluten or wheat allergies, but possibly more digestible to those who find the high amount of gluten in dwarf wheat to be indigestible). I really like them both. Emmer (or ehmer) wheat is a variety of wheat that predates dwarf wheat, which was bred to aid in world hunger, because it’s very hardy (the creator got a Nobel prize, which some GF advocates would likely like to retract from him, but then, millions and millions were saved from starvation!). The fact that dwarf wheat is quite a bit more glutenous than regular may be why we’re seeing gluten intolerance creep up in children; that’s one theory, anyway. But the scientific proof remains to be seen. So, as I said, I’m leery of dwarf wheat, but certainly not abstemious.
I agree about testing. Let’s remember that the blood test is about 70-75% accurate; that’s still 3/4 chances that you’ll test correctly! And if you have doubts, you can consider a biopsy. I had zero indication that eating gluten free was aiding my IBS. That, coupled with a negative test, felt solid to me. Had personal experience suggested to me that gluten was the culprit, but the test was negative, I’d have demanded a biopsy. We can use what we observe as a means of judging whether our test is worth doing again.
I think this brings up a lot of interesting stuff about how we conduct science, and now we “know” things. I like the idea of being intuitive, but I think scientific proof is important; after all, as Ginny once pointed out, it’s rather frustrating when ex-vegans claim that they just “felt” better after eating meat again, or that they “knew” they needed it, even if there is no indication of a deficiency. If we toss out the idea that testing matters, aren’t we turning our back on an enormous gift modernity has given us, which is the chance to marry personal intuition with the power of biochemical testing?
Yes, Gena, I love this! Since we’re on this subject: I had my initial consult with my allergy doctor today and she said, “I tried being vegan but I just felt hungry all the time.” The doctor mentioned she’d recently purchased a Blendtec that sits in its box at her house and I asked if she’d be open to me bringing some superfoods for her to try when I return for my follow-up appointment to go over test results. She said she’d be willing to try anything, so I’m going to make a list of things that could help her feel better on a veg diet. She said she wonders if a vegan diet could help her feel more peaceful. I told her I didn’t know but it was worth a shot! I think people, even really smart docs who focus on food sensitivities in their work, tend to overlook the science and give up on veganism prematurely. I agree, testing is a big gift, and I love the idea of this “marriage” you speak of. I know you’ll bring an awareness of the power using testing AND intuition to your clinical practice! Thank you for rocking, as always.
Been there, done that! When I went vegan, my soy consumption spiked and all of a sudden I was getting horrible breakouts and eczema all up my arms and neck. I’ve since cut out soy in all but trace amounts, and my skin cleared up almost immediately. I couldn’t say whether it’s an actual allergy or merely soy’s estrogenic properties getting all up in my hormones (because I did eat small/moderate amounts of soy before with no apparent reaction) but for me, abstinence has always been easier than moderation.
I’ve also been gluten-free for the past month or so, mainly because my mother did some sort of homeopathic cleanse earlier in the year and found that she felt a lot better off gluten (and I seem to have inherited all my allergies/intolerances from her). I’ve been plagued with digestive problems since my early teens, and almost all of them seem to have cleared up since going off gluten. It was rough at first because I went vegan, gluten free, AND soy free within about 2 weeks of each other. There was a week or so in the beginning where I subsisted on beans and rice because it was such a radical shift that I just didn’t know what to feed myself anymore! But I’m slowly learning.
I will probably reintroduce gluten at some point down the road, just to see if it really does make me feel worse. But as it is, I’m enjoying introducing new foods, and I try to view these new restrictions as an exciting culinary challenge. For me, it’s always been more about listening to my body than about getting a piece of paper from a doctor, though I might be able to chalk that up to my profound and abiding distrust of doctors! In general, though, I don’t feel as though I need a third party to validate my subjective experience, especially once I’ve found something that works for me and my body.
“I don’t feel as though I need a third party to validate my subjective experience, especially once I’ve found something that works for me and my body.”
That’s such a good point to all of this. There’s a level where “leaving things alone” is great. If you feel like your diet is working for you on all levels, why mess with it? This is good to keep in mind. I also think you’re right–abstinence can be psychologically and emotionally easier than playing with “how much” you can have. For instance, I know some people who can have small amounts of dairy without discomfort and then in larger doses experiences more symptoms. I cut dairy long ago as a vegan, but I get that it may be easier for some to just go cold tofu.
Thanks for sharing your thoughts, Molly Alice. I appreciate your insights.
Great post, Sarah. As a vegan who has cut out gluten (due to very painful GI distress after consuming almost any amount) I find that I do not miss anything with gluten in it. Ok, I wish I could still have a chewy bagel every now and then, but for the most part I never have cravings for it and when I see gluten foods they looks very unappealing. Probably because they make me so sick. I really want to get tested for celiac so I can know for sure. I’ve put it off because like Gena said, I’ll have to eat it for a while in order to have a reaction for the test. This means being sick again. But the reason I really want the test is because if it comes back negative I’d like to experiment with some sprouted grains. But because I’ve also had other auto-immune issues I know it’s best not to mess with gluten if I am indeed celiac.
Good luck with your test experience. I’d love to hear about it if you feel like sharing afterwards.
Also: “cold tofu” haha!
Hey Nikki, I’ll definitely keep you updated! Thanks for this post. I completely understand your not wanting to have to eat gluten to get the test. I’ve been adding it back slowly and my doctor’s appointment today confirmed what Gena mentioned, which is you have to eat more than a few bites of bread now and then to have the test be really accurate. I’ve found it weird to add back gluten after 2+ years pretty much avoiding it, but also oddly healing if that makes any sense? Not healing in that I feel especially superb eating wheat, but in that it feels like an empowering move to give my body a chance to allow the test to show more accurate results that ultimately will help me have the info I’m looking for. I hope not to go the biopsy route unless my doctor really recommends it. I’m also going to be tested for things like b-12, hemoglobin, vitamin D, and other things it’s great for vegans (and vegetarians) to check up on every few years. Yay SCIENCE 😉
I’ve been meaning to reply to this for awhile and finally am getting a chance to sit down and say everything coherently (or so I hope). I was diagnosed celiac before I was vegan. So my perspective is a little different. However I was vegetarian before that and probably eating a lot of wheat because I was very young and unable to get the proper support for my diet and back then “whole wheat” was all the rage. I had wheat at every meal, and for dessert!
I have a few thoughts that popped up right away, first, is that the girl that was diagnosed with celiac was so resistant and upset by the lack of foods available to her that my gut reaction is, “Why would anyone want to give up gluten if they didn’t have to?”. But now that I have had other foods that I am just sensitive to and have to avoid other than gluten (hopefully not life-long) I get it a little more. However the celiac diagnosis is different than just your tummy feeling ill after you eat wheat. Celiac means you have an autoimmune condition, and that’s important to know because other autoimmune conditions can come along with it or crop up if you are untreated. Also, celiac means you must be very strict about gluten, not have it here or there and try to not get your food contaminated.
I agree with Gena that you cannot just take the test or biopsy without eating gluten on the regular. I took the test again after many years of being gluten-free just to see and I appeared “normal”. My gut biopsy was normal too. (Yay, it’s healed!). So I really doubt it would work to not eat gluten then get tested. You could ask the doctor if eating spelt for awhile would be enough for the test. It’s lower in gluten so might not make you feel as awful as whole wheat, but might be enough to form the celiac test. Or perhaps barley, which is lower in gluten but not as much gluten.
I appreciate your not wanting to jump on the bandwagon and the thoughts about gluten-free be trendy. I have mixed feelings about this because it’s actually been so helpful to have more awareness and have people understand what I mean when I say gluten-free. Even if I can’t eat all the GF products out there, there are more available and the quality has improved as well as labeling on all products. However if a lot of people are avoiding gluten for non-celiac reasons, they may not be as sensitive as celiacs and this becomes a problem because someone might say something is gluten-free, like for example the Domino’s GF pizza, but since it’s cooked in the same oven with gluten pizzas a celiac should not eat it. (Not that I would eat it anyways from Dominos being non vegan but it’s just an example.)
As far as if I feel gluten is something everyone should avoid, I don’t think so. However I do think some people don’t feel so good eating a lot of it even if they are not intolerant. My husband does not eat gluten in the house, for my sake, but when he goes out he can eat it. However he noticed if he eats tons of bread he doesn’t feel so good. He has been tested and is not celiac. I think other people notice this too. Same with sugar. It’s just one of those foods that’s not good for anyone to rely too heavily on.
I am glad you are approaching this scientifically and I think in the end you seem like you want to really know if it’s celiac or not. But I guess you have to decide if some of the pain is worth it. I know from my experience that the longer I stay off gluten the more sensitive I become to it, so much as a crumb can make me ill. So I don’t blame you for being hesitant!
Hey Bitt, the points you raise are really helpful for me. I hadn’t even considered the double-edged sword of layperson (aka non-celiac) gluten-free awareness. Your point about the dangers of less strict gluten-free product labeling is a really important one. When I was living in LA I once called a local Whole Foods and asked them to make gluten-free vegan cupcakes for a friend’s birthday, and they refused–they said even though they had gluten-free flour and ingredients, because they weren’t a certified GF bakery, it wasn’t in integrity for them to call anything GF even if I wasn’t particularly worried about slight cross-contamination. Now I’m glad they did that after reading your point, good for them! (The solution: I trekked over to Babycakes NYC in Larchmont, they did a superb job!).
I thank you so much for your insightful, truly helpful comment. xoxo Sarah
I completely cut out gluten for 2 years, because after getting a parasite from overseas and getting leaky gut syndrome, I got a gluten intolerance. After I stopped eating gluten and dairy, I lost heaps of weight and started feeling heaps better.
However I spent 6 mths in Italy & travelled through Europe this year and found it impossible to go without gluten. I was able to remain dairy free. I found by reintroducing the gluten that I felt good and did not put on any weight.
Now that I’m back home I try to only eat wholegrain gluten and make sure I eat a variety of grains. I still do not have any symptons of gluten intolerances and I now have a mostly vegan diet.
I think this is because when I originally did the blood test, the gluten intolerance was only mild. The information that came with the test results stated I could reintroduce it, after 3 months, but for dairy it was too high an intolerance, so I should avoid it for life.
My doctor originally told me to not reintroduce, in case of getting an intolerance again, but his colleague told me it was ok, but I should stick with wholegrains. She told me that in Australia we have many people getting gluten intolerance because our wheat only uses one species of grain. Rather in Europe, they use a variety, so they don’t have so many people having these intolerances.
I don’t regret reintroducing gluten. In fact its makes life a lot easier as a vegan, when I eat out. So many gluten free options in my city are not dairy free. Plus I do like bread and pasta. I still opt for gluten free bread for breakfast and eat gluten free grains, which allows me to eat gluten foods less often.
I believe people should listen to their bodies and variety is key. From what I’ve read we get intolerances from consuming too much of one food. That’s why gluten, dairy and eggs seem to be more prominent intolerances. In Australia you can’t find many process goods without these things. So reducing process foods seems to be important in maintain healthy stomach and makes you less likely to get an intolerance.