I wish I could quit you, Gluten
March 13, 2012 3:51 PM   Subscribe

I'm a bit gluten intolerant. Question: Is it like Lactose intolerance, where if I quit it completely, I may lose the small amount of tolerance I have left? How much can I/should I eat?

So, I know I figure I can't have full-blown celiac, because I had a housemate with that, and he nearly died as a baby from wheat in his baby formula.

However, wheat is apparently not a laxative, except with me (And full of too much pasta hurts, but full of rice is non-nom-full! Took me ages to realise it wasn't just 'eating too much).
I have a family history of similar things on both sides, and my biological father has been told not to eat it by his doctor after 'stomach troubles', and well, he's a meat & 3 veg kinda guy, really not inclined to an 'diets'.

I've been blissfully oblivious, as I just 'accidentally' removed all wheat from my diet. I like asian, & indian kinda food. Rice, potatoes, rice noodles etc rather than bread or pasta. Miso packets and rice noodles instead of 2 minute noodles/ramen etc.
Soup & rice for breakfast, stuff like that...

My housemate with celiac went through my pantry at one point, and looked at me kinda strangely when the only think he could find with any wheat in it was two dusty cans of soup at the back, and tried explaining how odd that was. I had plenty of soup, just not any with wheat in it.

Two questions:
Testing -
I'd like to confirm it for sure, just so I don't feel like a hypochodriac (or even better, I could find out it's something else!) but apparently I'd need to eat at least 2 slices of toast for a month, in order to get a positive result on a blood test. And, ug. I don't want to feel like I've got a stomach bug for a month.
I'm also unaware of anyone doing genetic testing for it in New Zealand. Are there tests I am unaware of?

Losing my tolerance -
Everyone I've ever talked to who quit gluten, waxes rhapsodical, and then mentions that they're way more sensitive to it now, and trace contamination wipes them right out. The fanatical line is no gluten, ever.
But, I clearly do have at least a little of the enzyme that breaks down gluten, if I quit eating it all together, will I lose that? Like how many adults who stop drinking milk will lose their lactose tolerance?

Are there any studies on safe levels of gluten for non-celiac gluten intolerance? Or ones on how much lactose adults have to keep drinking to maintain their tolerance to it, as a kind of comparison?

For my own food, it's fine, but my sister has moved in and is cooking a lot, my new work has shared morning teas, I'm eating out more, and I have no ability to restrain myself from 'free food'.
Bread & pasta, meh. But, the occasional chocolate croissant? Roti Chanai? Banana Cake?!
And in a completely counter-intuitive move, I'm sure I've been eating more gluten since I realised it was a problem. :(

I really, really, really don't want to have to be a 'fussy eater'. It might sound stupid, but it really bothers me.

I'm trying to figure out what the best balance between optimal health, and optimal convenience would be.
posted by Elysum to Health & Fitness (22 answers total) 5 users marked this as a favorite
Best answer: A couple things...

1. You could still be Celiac. You're probably not, but it's possible that you have a mild reaction. I doubt this is the case.

2. No one has really proven that 'gluten insensitivity' is a real thing. I personally think it is, as gluten is well-documented to cause inflammation of the gut, but there is NO test for it. Let me repeat this so we can be totally clear: THERE IS NO TEST FOR GLUTEN INSENSITIVITY. I'm not shouting, I'm just making sure you and everyone else sees this. Any doctor or company that claims to have a test (be it blood or stool or genetic) is full of it or basing their test off of specious or incomplete data. The only way to 'test' for it is a double blind diet trial with a doctor that will measure your blood for levels of inflammatory and stress markers.

For what it's worth, I personally believe, and so do many researchers and clinicians, that the primary reason so many people claim to feel way better after quitting gluten has nothing to do with gluten -- it's because they cut out a lot of refined carbs that your gut flora love to eat and ferment into gases that cause bloating and the dreaded 'shits.'

Also, if you DO decide to give gluten-free a trial, PLEASE don't be that person who buys all the gluten-free products at the supermarket. Those products have highly refined flours that are devoid of nutrients and just all around bad for you. You already enjoy the cuisine of cultures (especially Asian cuisine) that do not use wheat heavily, so that part should be easy for you.

FINALLY, you should listen to this hour long discussion of Celiac and gluten insensitivity, it will answer a lot of your questions: http://thedianerehmshow.org/shows/2012-02-16/gluten-free-craze (Plus, the Diane Rehm show is amazing)
posted by imagineerit at 4:05 PM on March 13, 2012 [8 favorites]

I like asian, & indian kinda food.

I don't want to burst your Gluten Free bubble, and I don't know if this is an answer to your question at all. But... Indian and other Asian cuisines are fricken FULL of wheat. The region of India where most Indian food in Western restaurants comes from is, like, one of the world's great wheat producers. This is like saying, "I've cut out all corn from my diet by only eating Mexican food." The vast majority of all Asian noodles, too, are wheat-based.

Just because the stereotype is that Asia = rice does not mean that the Asian food you're eating can't possibly be wheat based. Even huge chunks of China are wheat-dominant rather than rice-dominant.

To answer your question more: it's my understanding that gluten intolerance is basically an allergy. Either it makes you sick or it doesn't. If you are really gluten-intolerant, wheat-based food, whether in bread form or jiaozi form, will make you sick. I don't think that exposing yourself to X amount of wheat is going to "preserve" your tolerance for it, or make you more tolerant of it, or whatever. If it makes you feel sick, don't eat it.
posted by Sara C. at 4:17 PM on March 13, 2012 [3 favorites]

Thai and Vietnamese food don't use a lot of wheat. Cut out the naan and there is a lot of Indian food that is gluten free and delicious as well.

Asians use a TON of rice. I don't know where Sara C. got that Asian cuisines are full of wheat. Some dishes use wheat, but tons - I'm inclined to think most, but I don't have anything to back it up - use rice, even for noodles.
posted by imagineerit at 4:31 PM on March 13, 2012

It is possible to have Celiac and not react in a big way to wheat - my brother in law was diagnosed because of persistent anemia rather than big gastro symptoms. My son on the other hand has big gut misery when he eats wheat - and he also has Celiac - it varies a lot. You are correct that you have to be consuming gluten to have a meaningful blood test for Celiac since your body will not be producing the antibodies they test for if you're not eating wheat. As imagineerit said, there is no test for gluten sensitivity.

That said, I stopped eating wheat a year ago after reading more and living in an essentially gluten free household and my migraines stopped. When I have (inadvertently) consumed wheat I have had migraines - twice in a year after weekly migraines for more than 30 years. So for me that's pretty convincing and it was a very small quantity of wheat. I didn't bother getting tested for Celiac before stopping eating gluten - we knew it ran in my husband's family and like you I had gradually stopped without it being a big plan. I don't eat many processed foods and didn't before I stopped gluten either.

I know other people who are gluten intolerant who vary in how they react if they consume gluten. One friend will choose to suffer for something irresistible and will feel lousy for a day. Another chooses to never consume gluten and when she has been glutened feels very ill for many days.
posted by leslies at 4:41 PM on March 13, 2012 [2 favorites]

I'm not saying all Asian dishes are full of wheat, but that just because a cuisine is Asian in origin doesn't mean it uses rice rather than wheat for starch items. Enjoying Asian food more than, I dunno, French food or whatever doesn't mean that you are avoiding gluten. Most Asian noodles that aren't explicitly called rice noodles are made from wheat. Dumplings? Typically wheat-based. Aside from maybe dosa, the vast majority of Indian breads are wheat-based. Flour might be used to thicken sauces, especially in Western restaurants. Etc. It's relatively likely that if you order something like tandoori chicken it will be naturally gluten free, but the same would be true of American barbecue chicken.
posted by Sara C. at 4:45 PM on March 13, 2012 [1 favorite]

I would investigate a concept called FODMAPs, which stands for Fermentable, Oligo-, Di- and Mono-saccharides and Polyols. It's basically the idea that a lot of people with various bowel issues have various forms of carbohydrate malabsorption. I did an elimination diet based on the concept and I was lucky enough to have a BF at the time who is a scientist and we did a hydrogen breath test for fructans, which seemed like the likeliest candidate. Turns out, I produce quite a bit of hydrogen from it, so staying away from fructans has been a great thing for me. My diet these days is kind of a "paleo" diet, with rice and a little low-lactose dairy.

The good news is that FODMAPs concept was developed in Australia, so there might be a GI doc near you who is willing to work with you on it.

But it's vitally important to rule out celiac, since untreated, it can cause serious problems later in life. There is a blood test that misses some cases, so a biopsy is often the gold standard if that is negative. The genetic test isn't terribly accurate.

Not all celiacs have strong reactions to wheat and they may even have less of a reaction than people like me who get bloating/gas/diarrhea immediately. There are many people who don't even know they have the disease until they are elderly because it manifests weirdly in things like skin reactions instead of GI problems. Celiac means you have to be very very very strict. FODMAPs intolerance is more forgiving. For example, I eat Thai Food often and Sushi. Yes, a lot of sauces (most soy sauce) have wheat, but since it's the fructans in wheat that bother me and I know that, I know soy sauce has little to know fructans and it's OK.

Also, gluten sensitivity is a REAL THING. Just because they don't know the exact etiology and there isn't a diagnostic test doesn't mean it doesn't exist. Then that would mean all kinds of things like IBS and fibromyalgia doesn't exist. There are now dozens of scientific
posted by melissam at 4:56 PM on March 13, 2012 [3 favorites]

Grain of salt that this is not my personal experience: I had a close friend who had a form of gluten intolerance, who was only able to really bring his symptoms under control after conducting a stringent diet test. As melissam says, it is very possible that you have some sort of particular sensitivity to something in wheat instead of a full-blown reaction to celiac. I'd strongly recommend at least talking to a doctor to see if there's some sort of elimination process to identify the source of your reactions.

And with the Asian food: just because a cuisine and/or a dish uses rice doesn't mean it doesn't have wheat. Chinese and Japanese cuisines use lots of rice, sure: but miso soup can contain gluten; Kikkoman soy sauce definitely contains wheat; as do some forms of oyster sauce. And on a broader sense, northern Chinese cuisines are almost entirely based on wheat with dumplings, noodles, mantou, etc. Lots of rice =/= no wheat. We'd never get off making broad blanket statements about "European" or "African" cuisine so I don't see why we do with "Asian" cuisines.
posted by andrewesque at 5:23 PM on March 13, 2012

My personal experience is that gluten tolerance is similar to lactose intolerance in its outward effects; that is, if I don't eat any for a long period of time, my tolerance for it goes dramatically down. However, if I eat a little each day, it doesn't bother me at all.

I've never had problems eating wheat but over the last year I've been eating mostly meats & veggies (paleo style, but with cheese). I find if I haven't had any wheat for 2+ weeks, eating something like a bowl of pasta makes me feel ill. My diet has become a bit more extreme (raw, but with meat.. cooked meat!), so I counteract the effects with awesome carb treats. For example, today I had a red velvet cupcake.

Of course, this is all anecdotal, and YMMV.
posted by valoius at 7:23 PM on March 13, 2012

Mod note: Please do not turn this into a debate about cuisines, folks. Thanks.
posted by restless_nomad (staff) at 7:40 PM on March 13, 2012

I blood-tested positive for wheat (& soy & peanut) in January. I was told to take it out of my diet completly for 3 months, to see what happens, then put it back in and see what happens then. I can't ell you (yet) what happens when you put it back in, but I do find it interesting that you are "unable to resist" the tea snacks: wheat was the first one I removed, and by week 3, that relentless drive to the snacks vanished. Your lack of willpower and the rise of wheat in your diet may, in fact, be a symptom.
posted by Ys at 8:04 PM on March 13, 2012

Not that this necessarily discounts the validity of the manuscript, but one of the ones linked to by melissam seems to have been at least partially funded by a manufacturer of gluten-free products.
posted by gubenuj at 8:15 PM on March 13, 2012 [1 favorite]

Response by poster: Sorry to cause a cuisine debate, but -
I wasn't trying to say that the entire asian subcontinent is wheat free!
When I said asian, & indian **kinda** food, I meant the style of my cooking is asian/indian *inspired*.
I cook my own food. I buy barely any premixed food because I've usually been on a budget, so it's pretty obvious that I'm not getting any flour.
I eat stir-fry's with rice noodles, dhal curries with rice, stews with potatoes, sushi, nacho's, etc etc. And this is the way I have been eating for over a decade. And not on purpose. I just liked it better (and in retrospect, something is not a nice comfort food if it gives me mild indigestion soon after).
So yes, the asian inspired food, in amongst the other food I eat, is entirely wheat free.

And I do find it pretty easy to eat food from my local malaysian, thai, vietnamese, taiwanese, *insert region of india here*, without it being bread or pasta based, even when eating out. Except for the eternal problem of treats like, what about Garlic Naan? Naaaaan???

On tolerance versus allergy:
It isn't an allergy, an allergy is an immune system response.
It's an intolerance, like lactose intolerance. Most (western) people have enzymes that break down gluten and lactose (kind of snip it up, like scissors).
Other people don't break them down (that's the 'intolerant' part).
If you don't break down lactose, instead you get bacteria breaking down the lactose sugars, and you get a gut full of bacteria and air, which isn't so good, but isn't that bad.
For gluten, if you don't break it down, the little strings of gluten can literally wrap themselves around your villi in your intestines, and shear them off, as well as doing a bunch of other stuff that I can't quite remember how it is related... Oh yeah, stuff like gluten then entering your blood stream, and other side effects, like your immune system starting to react against gluten, but your thyroid looks really similar to gluten, so can be involved in immune reactions against your thyroid, etc etc (I have a strong family history there, so I get tested regularly but other than a few high TSH blips, it's staying normal).

On Miso & soy:
My miso isn't wheat based, and I have never had problems with soya sauce, so I figured it must just be low enough to not affect me. And sure enough, on googling, it's such a small amount that under many food safety codes, it would count as gluten free - http://surefoodsliving.com/2007/05/kikkoman-soy-sauce-claims-its-ok/

imagineerit : On gluten-free stuff at the supermarket:
I am not going to buy gluten-free anything (oh, except for the chocolate cake at this cafe I go to that I bought anyway!). I'm fine at home, I just need to figure out how to have the willpower when I'm out, or increase my tolerance somehow.

Actually, could I have accidentally provoked myself into gluten intolerance by eating so little of it?

I'll eat any free food. Less of the bready-stuff, but, how am I supposed to pass up free food? Usually I go for the fruit & salami & cheese.

The thing I find so frustrating is that I find diet fanaticism really creepy, and the gluten-free thing is the latest fad in that streak, which is why I feel so annoyed that I'm... stuck in it somehow.

Many gluten free websites make it out like gluten is fundamentally evil to everyone, rather than just people who can't break it down, and I don't trust them. Or, they're worried about what looks to be *homeopathic* levels of contamination, especially when they've never even been diagnosed with something as severe as celiac.
I don't know how to get out of the bermuda triangle of crazy, or where to find advice that cuts out all the bullcrap.
This is the whining of a basically healthy person who is suffering from a minor, in the grand scheme of things, condition, and woe, the suffering which it induces. I'd play a tiny violin, but that would sound even worse.

I have a couple of resolutions:

I don't want to cut out gluten entirely, so like valoius discusses, I going to give myself a break from wheat/gluten etc for a week or two, until my insides go back to normal, then slowly start at just a regular cracker a day, and see if I can keep something like that up without feeling awful.

And I'll take some single servings of packet cooked rice when I go out to dinner at friends.
I've taken that with me a couple of times, so that if I'm at someone house I can just swap out pasta for rice, so maybe I should just carry them with me always.
And rice crackers in packets hidden in the staff kitchen, so I can have things dips & stuff, without the bread.
posted by Elysum at 8:56 PM on March 13, 2012 [1 favorite]

If you do test positive to the hydrogen breath test or end up figuring out you have a minor sensitivity/intolerance, I use a supplement called Glutenease that seems to work pretty well. I use it maybe every two weeks for a treat and it seems to prevent the gas/bloating/diarrhea.

I'm very much not in the gluten is teh evil school of Wheat Belly and other scare-mongering books. However, it's always something to consider when having digestive issues, though not the only thing. I personally react just as badly to quinoa and broccoli, which I never would have discovered if I had stuck with the mindset of "get rid of gluten and it's like magic!" That's why I like the FODMAPs approach the best. Some people don't even notice I'm eating differently. I stick with the cheese and fruit at parties, frequent curry and sushi places when I go out, and every so often I take some gluten-ease and enjoy something really really worth it like a beer. I guess pizza is my kyptonite, but I don't encounter it as much now that I'm older.

The tolerance vs. allergy thing is more complicated for gluten though. Celiac is not like a peanut allergy where you swell up and having problems immediately, it's a chronic autoimmune condition. Celiac is way worse than an intolerance, so it's important to rule it out. Intolerance is a nuisance, Celiac is a disease.
posted by melissam at 9:21 PM on March 13, 2012

In my own personal experience, food sensitivities like this can come and go, so what works now might not work later, and probably no one can really understand or explain the "why" part on an individual basis--you may be exposing yourself to things that exacerbate or ameliorate your symptoms in any one situation, and really only you can figure that out. It doesn't seem like there is a consensus answer on whether you'll make your intolerance worse by totally avoiding it, and though I'm by no means an expert on this, it also seems like there's not really strong evidence that you'll harm yourself by basically experimenting on yourself the way you describe.

On preview, like I think melissam is saying, I think your approach is really sensible--in the end, it kind of doesn't matter what the tests or studies say about this, if avoiding gluten makes you feel better, then avoiding it is the right thing to do.
posted by gubenuj at 9:32 PM on March 13, 2012

I don't really know how bad your intolerance is but I'm WHEAT intolerant and it's exactly like lactose intolerance, with everything that implies. I can eat gluten, just not wheat gluten.

I have family that's lactose intolerant, from "shouldn't eat cheese or drink milk because it's makes me gassy" to "must avoid all dairy including milk chocolate or suffer terrible debilitating cramps". Depending on where you are on the spectrum you might just need to cut down to 2 or 3 times a week or completely avoid it because if you don't you have intestinal bleeding from everything just going right through you without stopping.

If it's an intolerance, your body will ultimately let you know in a very obvious way where your limits are, either by sending you to the ER or the doctor because of the symptoms or you just being gassy all the time.

I'm a 2-3 times a month sort of person and I've found that some foods are best avoided: pasta (it's just too gluten-y) and store bought bread (it just doesn't taste good enough to blow a monthly wheat allotment on) in particular.
posted by fiercekitten at 9:34 PM on March 13, 2012

The whole gluten thing is really annoying. I wish people who aren’t bothered by gluten would just not worry about it and keep their opinions to themselves.

Gluten totally screws up my digestive system. I suffered for years with heartburn, constipation, headaches, and general indigestion. Someone suggested I try cutting out gluten. I thought it was a pretty ridiculous idea, but tried it anyway. Within a week or two I felt great, and never have any of those problems anymore unless I accidentally eat gluten. I suspect I may have had anemia, but I need to go to a doctor to check it out.

Food is just food. Giving up gluten is no big deal. Being sick all the time is.
posted by bongo_x at 9:35 PM on March 13, 2012 [5 favorites]

You can have Celiac disease and be asymptomatic. That's my daughter. She has Down syndrome and there's a fairly high incidence of Celiac with the tripled 21 chromosome. I attended a talk about updated health care standards for kids with trisomy 21 and the doctor presenting it recommended screening for Celiac (among other things). We did and we asked why we hadn't been seeing issues and her pediatrician said that people can be asymptomatic for years.
posted by plinth at 3:26 AM on March 14, 2012

I was in the same boat as you, after it finally dawning on me that gluten might be my problem I went 100% gluten-free for about 6 months and felt a million times better when I did. I didn't get any official testing, because what's the point? The "cure" is just to stop eating it.

However, I recently decided to start experimenting to see what I can eat that won't upset me--I'm a vegetarian and it's already sometimes difficult eating out as it is. I don't eat gluten-type things on a regular basis--maybe once every two weeks. I'm slowly learning what will upset my system and what doesn't. Luckily pizza and pancakes are still on the menu for me!

Anyways, just wanted to throw in my anecdote and say that, for me, it's mostly just experimentation.

I'm still too scared to try beer again, though.
posted by Zoyashka at 10:03 AM on March 14, 2012

I didn't get any official testing, because what's the point? The "cure" is just to stop eating it.

Yes, my health insurance is so expensive that I can’t afford to go to the doctor for things like this.

However, I recently decided to start experimenting to see what I can eat that won't upset me--I'm a vegetarian and it's already sometimes difficult eating out as it is. I don't eat gluten-type things on a regular basis--maybe once every two weeks. I'm slowly learning what will upset my system and what doesn't. Luckily pizza and pancakes are still on the menu for me!

I’ve eaten very little meat for years, but I’ve had to up it a little lately. It’s pretty hard to find things if you’re not eating meat or gluten. I also think this contributed to my suspected anemia. I may have to break down and go to the doctor for that.

Pizza and pancakes?!?
posted by bongo_x at 10:29 AM on March 14, 2012

Best answer: You may not have issues with gluten at all, but may be allergic to a different protein in wheat entirely. That is my situation.

It's good because I can still eat barley and spelt! It's annoying because YUMMY YUMMY WHEAT.

In any case, eating foods that make you ill is counterproductive. Don't do it. It's not like you're building resistance by doing it--the more that adults eat foods they're allergic to, the more they become sensitized to those foods.
posted by Sidhedevil at 11:37 AM on March 14, 2012

Best answer: On tolerance versus allergy:
It isn't an allergy, an allergy is an immune system response.

The symptoms of wheat allergy are very similar to what you describe, is the thing. Many people have primarily digestive symptoms, rather than hives, etc. You won't know without a diagnosis which process is going on for you.

Skin testing for allergies to specific wheat proteins are considered fairly informative, though the gold standard of testing remains "avoidance and challenge" tests.
posted by Sidhedevil at 11:43 AM on March 14, 2012

You can put your faith in a doctor's test, and/or you can do empirical research. Keep a food and health diary for a month (what did I eat, how did I feel) Stop eating anything with wheat/gluten for a realistic period of time, probably not less than 60 days. Keep up the food/health diary. Assess the results.

An awful lot of people seem to be getting good results from eliminating gluten/wheat from the diet. I'm considering it. That Diane Rehm show looks interesting.
posted by theora55 at 7:09 AM on March 15, 2012

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