Gluten allergies must be made up
November 13, 2013 5:52 AM   Subscribe

How do I come to terms with the glaring in-your-face reality that I have a gluten allergy and that it is not going to go away?

I have a "bad stomach" and was diagnosed with IBS about five years ago. Bad stomach cramps, bloating, gas, diarrhea/constipation, etc. were a pretty constant every day thing for me. I was prescribed a few different medications to try to help with my IBS symptoms but none of they worked consistently or well enough to justify the drugged out feeling they gave me. I also was diagnosed with acid reflux and have been on medication for that for years.

About two years ago I noticed that my stomach problems were starting to get worse. My stomach aches were happening much sooner after eating, they were more severe and uncomfortable, and they lasted longer. Foods that used to be "safe" weren't anymore. I was feeling ill after almost every meal and I was getting desperate. I tried cutting out gluten, just out of curiosity after hearing stories of how much better some friends of mine felt when they cut it out of their diet. I figured I had nothing to lose by just giving it a shot. I didn't really expect to feel appreciably different, it sounded like a bunch of woo to me, but my stomach problems improved dramatically.. The change was huge. I stopped feeling sick after every meal, I stopped feeling uncomfortably bloated and nauseated, I had more energy, and pretty much all of my IBS symptoms disappeared. Other physical things that I suffered from that I just took as "normal" (ex. sudden intense pain in my joints, lack of concentration, fatigue, etc.) went away as well, which was totally unexpected. And when I add gluten back in all of those symptoms come back.

I went to my doctor and she tested me for celiac, which came back negative. The problem is that I didn't know I was supposed to be eating gluten prior to the test. I had been gluten free for the better part of a year when I had the blood test so maybe that skewed things...? My doctor said it didn't really matter that it came back negative, I clearly shouldn't be eating gluten. There are a number celiacs in my extended family, this isn't a huge leap. I could get tested again but I am not willing to eat gluten for 2 weeks and be sick that entire time. Plus, since cutting out the gluten I have become much more sensitive to any bits of gluten. I used to be able to get away with small amounts of gluten from time to time (ex. breading on onion rings), but now any gluten sets me off. I'll eat something that I think is safe and that I had no problem with in the past, and then when I get unexpectedly sick I check the package and oh, there is trace amounts of gluten... awesome.

So clearly I have some gluten difficulty, and it is becoming more and more clear that it is not going to go away, which is making me more and more upset. Living this way sucks. I can't enjoy some of my favourite foods. Going out to dinner with my husband becomes a thing because it is hard to find a place where I know I have things I can eat. I'm a hassle to anyone who has me over for dinner, and often even when the host puts in the effort to accommodate me they end up missing something and accidentally including gluten. They then feel really bad for making something I can't eat, and I feel bad for being such a nuisance. Most of all I live with the constant fear of getting gluten'd. I've been accidentally gluten'd twice in the past couple of weeks and it SUCKS. I am very hesitant to eat anything unfamiliar because gluten hides in practically everything.

This whole thing just seems really unfair, and frankly stupid. Gluten? Seriously? I'm allergic to BREAD? That is idiotic. It sounds like such BS. It sounds like something made up. A big part of me really thinks I must be faking, so every so often I "test" it by eating something with gluten (and then of course get really sick). My husband gets irritated with me whenever I test, he doesn't understand why I can't just accept it. He has accepted it, he is fully on board and is doing everything humanly possible to accommodate this and to make it as easy on me as he can. He is better and more careful than I am when it comes to reading ingredients and double checking to make sure things are safe. He makes only gluten free pancakes now, dredges things in gluten free flour, makes gluten free lasagne, and he will always try any gluten free food I make. He frankly has been amazing and has done a huge amount to make this as easy on me as possible. And yet I still can't stop being angry and sad over this. I am angry that everyone has to do so much to accommodate me, I feel like a nuisance and it is embarrassing. I am sure that some people think I am one of those people pretending to be gluten sensitive because it is trendy right now, which makes me angry too.

tldr - I have a long history of stomach problems of increasing severity, and they all went away by cutting out gluten. I tested negative for Ceilac, but I hadn't been eating gluten prior to the test so it possibly wasn't accurate. Despite the huge improvements in how I feel when I'm not eating gluten I am having a lot of difficulty coming to terms with the fact that I have this problem and that it is likely never going to go away. I am angry, sad, embarrassed, and in denial to a degree.

So... what can I do to help speed along my acceptance of this? What can I do to embrace this, instead of doing it grudgingly and grumpily. How do I stop mourning my old life where I didn't have to go through so much effort just to be able to eat? I have been trying to get excited about gluten free cooking at home and trying to focus on how much better I feel, but I am still stuck in this grieving/angry/sad loop, as well as still being partially in denial. I cannot wrap my head around the fact that this is a forever thing, nor can I really accept that this is real.
posted by PuppetMcSockerson to Health & Fitness (29 answers total) 10 users marked this as a favorite
Best answer: I am also gluten intolerant. I discovered it almost by accident, shifting to eating gluten free in solidarity with my son who has celiac. Ironically I'm sitting here typing feeling like crap because there was gluten in my meal last night and I didn't figure it out. Is it a hassle? Yes. Do I feel like a poseur sometimes given the looks one gets in restaurants from servers given how trendy GF is now? Yes. But - I like how much healthier I am without gluten. I like not having migraines all the freaking time. I like having more energy, having lost the extra weight I was unable to lose otherwise. I try to focus on the positives and figure this is easy compared to so many other health issues one might have. I don't think about what I can't eat because it would only make me sad.

I have friends who can't eat all sorts of things, who have serious chronic illnesses that aren't treatable, and loads of people I know with cancer going through awful treatment. So for me, simple gratitude that I can feel better by changing how I eat carries me a long, long way. That may not work for you. It's ok to grieve the loss and to find alternatives. What are the foods you most miss? Many of them can be GF and some things are better GF but have to be made at home or you have to hunt for a place that can accommodate it. Don't know if that helps.
posted by leslies at 6:03 AM on November 13, 2013 [3 favorites]

Best answer: Well, you certainly aren't alone. Neither in the illness nor the difficulties accepting it. It is, in fact, normal to grieve the expectations of a 'normal' simpler life. It is normal to be angry about this all. It is more difficult and can limit you some.

However, it could be a LOT worse. Gluten free foods and awareness of the condition are becoming increasingly common. Some even taste extremely good. So... partly, put your big girl panties on. This IS real. You know it. You HAVE to take care of your self. You DON"T want to live life with the allergy, and I strongly suspect the longer you are off the allergen, the worse your 'tests' will end up for you. I suggest looking yourself in the mirror and admitting The Truth- that yes, I AM allergic, it IS somewhat life changing, but YES, I CAN and WILL deal with this. Silly sounding, but works.

Also partly, you do have my sympathy. I'm watching someone learn about her gluten allergies too. I know how frustrating restaurants and friends and even grocery shopping can be. Having your husband help you take more agency will help. Go to trader joes or whole foods or (Insert hippy grocery store here) and ask a manager for their gluten free foods list. Find some of your favorite foods on there, and have a party. Make your favorite meal, but GF it. Get some GF cupcakes. They are tasty. Bring emergency GF food to events. Awkward, but you wont starve.

Be gentle on yourself! This isn't your fault. It is rough, but you can do it.
posted by Jacen at 6:10 AM on November 13, 2013 [1 favorite]

Best answer: I think the key is making the transition from eating not-gluten - i.e. building a diet around substitutes and compromises and sailing close to the wind on ingredients lists - to one that is wheat-free and not based on the idea of wheat.

Mrs MM doesn't agree with gluten although she isn't intolerant as such. She is also on an 18 month drive to lose weight and get super healthy. Although we have rice pasta from time to time mostly we've switched to a rice diet if we have carbs. Which means, in practice, going out and buying some Japanese and other cookbooks that aren't all about wheat, and learning to get creative with meat, vegetables and rice. It's been fun and positive and emphatically not been about going gluten free, even though that is exactly what has happened. I rationalise it like this: if I'd been born into a culture that wasn't wheat-dependent would I care about gluten?

A second part to this is an almost complete switch away from ready-made and processed foods. I've been surprised at how painless this has been - most meals we cook take under 20 minutes. Now, on the very rare occasions I have a shop-bought ready meal it tastes insipid and unpleasant.

In short: lots of people go down the route of managing gluten intolerance by eliminating it and substituting it out with some method or ingredient that is inferior in taste or texture. Personally I think that just rams it home again and again what you're missing. I think a far better route is to make a virtue of what you can eat and readjust. If possible, drag your other half with you. It's a big gluten-free world. Moving away from processed foods is one part of the battle. Embracing and exploring what you can eat is the second part.
posted by MuffinMan at 6:11 AM on November 13, 2013 [10 favorites]

Make it a baking challenge? You can find some amazing gluten-free brownies. Bake GF bread at home?

Focus on the positive qualities? Keeping your body out of the inflammation zone means better long-term health. Weight loss? If you care about weight loss.

Tibetans have a meditation where they exaggerate the flaws and disgusting aspects of their object of attachment. Picture yeast expanding your stomach and irritating your intestines. Really entrench the cause and effect in your mind so when you see bread you see red! (inflammation)

I have no idea I'm just throwing some ideas out there.
posted by St. Peepsburg at 6:12 AM on November 13, 2013 [1 favorite]

Best answer: Going gluten free is not the end of great food. And it is so much better to enjoy a meal and feel well afterwards than to enjoy a meal and spend the night with cramps and pains. Yes, it might be an adjustment, but it is so worth it for the overall quality of life and your health. And let me tell you, after a while your taste buds forget all about the wheat flavor and gf stuff tastes great.

Fwiw, an intolerance might not show up on tests. Either because the allergen was cut out beforehand or because the test range is too narrow. All kinds of factors, like height, weight, etc. can have an impact on levels of allergens. The important thing is you feel better if you omit gluten - that is all you need to know. Trust yourself.

There are a lot of resources out there that can ease you into the gluten free lifestyle. It is amazing how many gf products are available these days. Do you have an organic/ health food store in your area? Or some other store that is well stocked with gluten free products? I suggest you take a trip and buy a variety of food items to try. Or look around online. It might be possible to order gf staples via Subscribe & Save on Amazon.

By now, there is nothing I miss from my pre-gf diet. Promise. And I believe you can get there as well.
posted by travelwithcats at 6:18 AM on November 13, 2013 [2 favorites]

Best answer: I could have written your post. I too had a negative celiac test but clearly do much better with no gluten in my life.

Luckily, since it is a trend now, there are plenty of gluten free things for us to eat. Yes they cost the earth, but now I can have a sandwich on wee slices of crumbly bread, which is better now than it ever has been in the past.

I do a lot of cooking at home and I test things. I have a great brownie recipe that uses almond flour. I enjoy the Glutino line of foods, I am eating a bagel with cream cheese as I speak.

It could be worse, I'm also sensitive to eggs and peanuts.

So my mother rolls her eyes. It's fine.

I find that Chinese and Mexican are pretty safe for dining out. And I roll with it when hanging with friends. I may only eat a salad at a party, but that's okay. It's just food. I can eat something when I get home if I'm hungry.

It may take awhile, but it will get better.
posted by Ruthless Bunny at 6:21 AM on November 13, 2013

Best answer: 1) Gluten allergies or sensitivities don't necessarily mean celiac, so it's certainly possible you could not have celiac but still benefit from limiting gluten in your diet.

2) Regardless of your test results, if your body does better without gluten, your body does better without gluten. You don't need a diagnosis to know your body.

3) You don't need to feel bad about what your body needs or needs to avoid. The human body is a delicate machine, and at different stages in our lives, we all find that our bodies need a little TLC to function optimally. For you, at this moment, perhaps removing gluten from your diet is what you need. In ten years, maybe you need statins. In another 30, who knows what. We all need tune ups.

4) Ignoring what your body tells you is not great. I expect that if your doctor told you your child needed a special diet, you'd ensure your child ate what they needed or excluded what was proscribed. You should take your own health as seriously.

Last year, my doc changed my diet based on some blood test results, so I appreciate your situation. There was some amount of "Wah, I eat healthy, why is this happening to me, now I can't eat any of my favorite things, boo hoo." But you just have to do it, or live with the consequences. At the end of the day, I'd rather know I'm doing something good for myself and my family than having an extra cruller or whatever.
posted by Admiral Haddock at 6:31 AM on November 13, 2013

Best answer: My spouse was diagnosed with not only gluten allergy, but also eggs and dairy. The first months was pretty much like you, a combination of "This Sucks" and "WTF can we eat???". Now, 2 years later, we've adapted pretty much to the situation and look on it as an opportunity to try different things. There are a host of cultures where gluten just doesn't show up in the food much, particularly from the tropics and sub-tropics. Corn, rice, tef, quinoa, oats are all grains that are just fine, and thus Central and South America, Africa, and Asian cuisine's open right up to you.

If you're really locked in to the European/North American diet then it's a little harder, but even there when you go out to dinner pretend you're low-carbing it. Ask the waitstaff at your favorite steak restaurant to hold the rolls. Look for dishes that use oats or buckwheat instead of wheat. Ask for your hamburger served low-carb (you'd be surprised how many places will do this and wrap it in lettuce). Have your sub at Subway as a salad. Etc. Heck, we have our weekly planning meeting at Denny's every Saturday morning, so if they can come up with a non-gluten non-dairy non-egg meal you should be able to find something at just about any restaurant.
posted by Runes at 6:31 AM on November 13, 2013 [1 favorite]

Best answer: Aw, this sucks. I'm sorry. There is often an aspect of shame/denial/despair about permanent health conditions, which makes total sense - think about how many people get irritable about having to to take a pill every day for their maintenance conditions, and then think about how much more MASSIVE upending your entire diet is. So I think step one is this: "My emotions regarding this are completely valid". Step two, though, is, "... but my emotions don't have to control me." So feel what you're gonna feel, but WHILE you're feeling it, suck in as much information as possible... learning everything you can about GF cooking, the science behind it, etc. will make you feel empowered, rather than a captive to your condition.

And if you have any questions about GF cooking, there is always AskMe!
posted by julthumbscrew at 6:34 AM on November 13, 2013 [1 favorite]

Best answer: It sounds like you are partially stuck on the negative celiac test. Don't be. The celiac test has a high threshold for showing positives. There are many many people who test negative for celiac but who truly can't tolerate gluten.

People who comment on Ask Metafilter are generally skeptical and very quick to call out woo. If you search previous questions for "celiac" and "gluten" you'll see lots of support for the fact that this is a real condition and that it can exist in the presence of a negative test for celiac.

So that piece, at least, you should be able to get over.
posted by alms at 6:37 AM on November 13, 2013 [2 favorites]

Best answer: I am angry that everyone has to do so much to accommodate me, I feel like a nuisance and it is embarrassing.

Nope nope nope! Look, I grew up in a household with someone with a wheat allergy (so, less sensitive than celiacs, but similar food; we did have regular bread and flour around) and even as a small child it was pretty simple to keep track of at home or in restaurants. Are there croutons? No croutons! Did they serve a roux? No sauces without double-checking! Did you use the peanut butter knife on regular bread? Get a clean knife to get more peanut butter! Birthday cake? Ice cream cake! (There even a lot of gluten-free bakeries and baked good mixes now, so there are even more options there.)

It's so much better now than it used to be-- the food is better, the alternatives at restaurants are better, the awareness is better. I will second the recommendations for non-European/North American food items; a lot of traditional Mexican, Indian (sans naan), and Thai/Vietnamese dishes don't involve gluten to begin with. (Conversely, rice wraps and rice noodles are easy to swap in for their bready/noodlely counterparts.) So no, don't beat yourself up. It isn't embarrassing. Gluten makes you sick. That's it. Let the anger go.
posted by jetlagaddict at 6:43 AM on November 13, 2013 [1 favorite]

Best answer: Would you be more angry if you had permanent pain and bloating all the time?


You found the thing that fixed you. This is a very big deal. Many people go through life with chronic pain and no hope for a cure. Sorry to be frank, but you are complaining that you feel better but can't have some bread? Move it along. Be happy that you are fixed.

(And in case you think this is insensitive, I had migraines ALL DAY EVERY SINGLE DAY for fifteen years before I quit gluten. I'm thankful every single day for finding the one non-medication, non-surgery, non-expensive thing that fixed me. Doughnuts? Please. Not worth my health or sanity.)

And, PS, this is probably the best time in history to be GF. The stores are packed with (surprisingly) delicious GF foods, restaurants are aware and will help, people see it as a real disease, and a cursory search on the interwebs will bring you tons of recipes. Again, perspective. Imagine doing this in the 1980s or even five years ago (which, as I recall was ok, but not great).
posted by mrfuga0 at 6:56 AM on November 13, 2013 [8 favorites]

It's becoming increasingly popular to be giving up bread anyway, so I think that the awkwardness of having that class of things you can't have is really something that's shared by a lot of people--people with gluten problems, people with low-carb diets, whatever. But you've even got a ton more basic staples you can eat than the low-carb people. Corn. Rice. Potatoes. Start exploring and finding new favorites. Friends who are really friends will not really feel put out by altering some food arrangements when you come over. People who like having people over for meals generally enjoy cooking and are not going to be really freaked out by more cooking. My family routinely makes separate dishes for a family member who just plain doesn't like onions--nobody minds this, it is not a burden!

I think it was Anthony Bourdain had something once about how yes, if you take a lot of chances with food, you're likely to get sick once in awhile. If you're generally healthy, it's not going to kill you, it's just going to make you uncomfortable for a bit, and the food experiences you'll have by taking chances are so much better than what you'll have being 100% safe. Eat defensively, but keep whatever you need on hand to increase your comfort level when your stomach DOES get upset, and accept that it's likely to happen once in awhile. Better once in awhile than all the time. I know someone who is severely lactose intolerant but has a list of "worth it" foods--one particular cheesecake recipe, one particular pizza place--where the occasional indulgence is always followed by an unpleasant night but is still better than a lifetime of only having dairy-free cheesecake. You may want to strategize like that if there are some things you still miss desperately. Just try to make food decisions such that you're not taking risks for boring stuff; take risks for really good food.
posted by Sequence at 7:17 AM on November 13, 2013

I think you need to schedule an endoscopy with a gastroenterologist and get their advice about how much gluten you need to eat in advance to make sure the biopsies can be assessed for celiac disease. Here's why: celiac disease is a real thing, the blood test is not super accurate (especially if your diet was gluten free beforehand), and celiac disease is not just about having GI symptoms -- as you know, because you noted issues like joint pain that have improved on a gluten free diet. Celiac is a full blown autoimmune disorder and if you truly have it, then you need to be on a lifelong strictly gluten free diet. Noncompliance in celiac patients is associated with osteoporosis, anemia, skin conditions, malnutrition, etc. Prolonged noncompliance can lead to refractory disease which means that symptoms persist even on a gluten free diet.

Not trying to scare you, but I think you should be diagnosed. If nothing else it should ease the guilt you're feeling about your diet.
posted by telegraph at 7:34 AM on November 13, 2013 [2 favorites]

Best answer: It's OK to feel like "how can I be allergic to bread? It's the BASIS OF ALL LIFE." I get it. I can't eat gluten either, and I spent time at first wondering if I was going to never see the inside of a restaurant again.

How you start making it feel normal is looking up what places near you have GF menus and are versed in cross contamination protocol. Start exploring new cuisines, read GF blogs, and browse the health food store near you. And take full, full advantage of the foods that are naturally GF (fruits, vegetables, unprocessed meats, dairy products, rice, etc). The more food you make with stuff that is naturally GF is more stuff that you won't feel weird by eating.

Once you learn the simple swaps it all comes second hand. I had tacos last night and just made sure the seasonings were GF and that it was on a GF corn tortilla.
posted by skittlekicks at 7:35 AM on November 13, 2013

Best answer: The same thing happened to me, so I get it. I had gotten to the point where I wouldn't eat on a day when I knew I'd have to be in meetings, because my stomach would rumble so loudly, and so constantly, after every meal, that I was sure it could be heard in SPACE.

Of course, what I was eating was a bagel with cream cheese for breakfast, some kind of soup/salad with rolls for lunch, and then generally something pasta related for dinner.

I thought it might be celiac, and got tested, but it came back negative, so I ruled that out and happily continued eating gluteny things. But when nothing I eliminated ever had any effect, I finally decided to try just ONE DAY without bread, pasta, etc, just to see what happened.

It was miraculous. I couldn't believe it - a totally peaceful stomach all day long. I kept it up for one more day to make sure it wasn't a fluke, and it wasn't. As long as I didn't eat anything with wheat in it, my stomach was fine. No gas pain, no noise, no nothing. After about a week I reintroduced it for a couple of meals just to test - and it all came back.

I've been gluten-free ever since, and my life has been tons better. But take it from me, it is just amazingly easy to avoid the stuff and still be happy. There are a lot of pizza places that do gluten free crusts now; you can order wings with no breading from most places; there's soy sauce with no wheat; and an amazing amount of junk food doesn't have wheat in it (don't ask me how I know. I just DO.)

Plus, unless you live in a rural area, you can probably easily find restaurants with gluten free menus, and then it's not even a thing - you just order off that, and your family can order off the regular one. My personal favorite is a place in town where I can order gluten free pancakes. <3

Most grocery stores now have a gluten free section where you can get bread, cake, muffin, pancake, even biscuit mixes that won't trouble you.

But what I find easiest to do is just a) prepare my own meals, mostly and b) eat mostly whole foods. It's hard to get accidentally glutened when you're the chef, and if you don't plan to rely a lot on sauces, it's really easy to just eat some protein, some vegetables, and a little starch without going near wheat.

The only thing I still find difficult is dealing with work stuff - people bringing in brownies or cupcakes for celebrations and not thinking about whether everyone can eat them, or holiday parties planned at Italian restaurants where the very idea of gluten free is basically a joke. That's kind of a bummer. But you can always find a salad even at those places, so it's just an annoyance, not a real problem.
posted by kythuen at 7:35 AM on November 13, 2013 [1 favorite]

Best answer: And I just want to add, regarding Sequence's post, actually having a diagnosis of celiac is the difference between "worth it" foods once in a while and "NO food is worth risking your health." For patients with celiac, Anthony Bourdain's advice does not apply (and is pretty obnoxious).
posted by telegraph at 7:37 AM on November 13, 2013 [4 favorites]

It sounds like a lot of your problems with accepting this diet stem from how you think other people are going to react to you. Are you by any chance someone like me, whose survival strategy growing up was to be the easy one, the one who never raised a fuss, never caused any problems? That's who my family needed me to be when I was younger, and so that is who I was for a long time (on the outside at least). It can still be intensely uncomfortable to let down my guard and admit that everything is not actually okay, and that is true even among people I love and trust.

I also have a problem with gluten, and I found one of the hardest things at the beginning was the way it forced me to share: it forced me to be honest, and it forced me to admit to random strangers, and people I didn't know very well yet, that I had needs. I was so used to ignoring those needs in favor of making other people more comfortable that I glutened myself a number of times completely knowingly, because I couldn't bear to say, "I'm really sorry, but I can't have a piece of your birthday cake."

The good news is, it gets easier to speak up if you practice. The good news is, it is good to be an advocate for yourself. The good news is (if you're like me, which you may not be), you can learn something important from speaking up, and that is: sometimes you can tie yourself up into unhappy ashamed knots about something that just isn't a big deal to other people. I used to think that making other people deal with my gluten-intolerance was this huge burden, but nobody else seems to consider it one. My friends and family now know what I can eat and what I can't, and if we're going to a restaurant or making dinner together and they have forgotten if it will be okay, they check. That's it. It turns out it is mostly not a big deal, and that the people who care about you care more about you feeling not-sick than they do about getting to serve you their famous cake.

And, a final tip in another direction: I think it does work best to start eating foods and cuisines that are naturally gluten-free, instead of relying totally on bread subsitutes, etc. But I think it also helps to figure out one thing that you are missing horribly and that is making you feel sad and deprived to not have and figure out a good subsitute for that. For me, it's pasta. It turns out I don't miss bread all that much, so I don't bother buying gluten-free bread for a million dollars a loaf, but I really miss pasta if I can't have it. So I splurge and buy good gluten-free pasta, and then it's a lot easier to be happy with the gluten-free business.
posted by colfax at 7:40 AM on November 13, 2013 [5 favorites]

Best answer: Your experience is so closely parallel to my wife's that you could be her. The only differences in her case are that gluten appears to trigger an allergic reaction as well as the GI issues, and she never had the celiac test since she'd already stopped eating gluten. Things like getting much much more sensitive after cutting out gluten are normal and expected. The fact that you re-experience symptoms after you add gluten back in, or can trace "surprise" symptoms back to a specific food you ate by mistake, tells me that you're probably truly having an issue with gluten.

There IS a medical basis for this, but like with ADHD, fibromyalgia, and many other "diagnoses du jour" it is trendy to avoid gluten, or to diagnose yourself with a gluten intolerance when you don't have one. This can be a double-edged sword. On the one hand it's made many restaurants and food manufacturers much more aware of the issue and willing to provide gluten free offerings. On the other hand some food vendors are very lax with cross-contamination or sourcing their ingredients, and many of the "posers" wouldn't be able to tell the difference. A lot of people are led to believe that all gluten problems are made up because of this, but don't let them influence your thinking. You have every reason to believe this is real for you.

There are three things that can cause a problem with gluten. One is celiac, one is an intolerance (lacking the enzyme to digest gluten), and the other is an allergy. Testing for celiac only addresses one of these possibilities, so the test means very little in terms of what you can eat. If you DO have celiac, there are some additional things that can be done to help repair the damage to your digestive system, so it's nice to know whether or not you have it.

We've dealt with people who think that because there's no flour that their food is gluten free, or who have no notion of cross-contamination. Often when going to restaurants we've had to not just accept the answer that something is GF at face value; we've had to "read" the person and judge how much they seem to know what they're talking about. I'm sure on the other side there are lots of people trying to judge whether my wife has a "real" gluten allergy or not. That's unfortunate, and my wife often feels the need to slip into conversation things about how she'll be sick for days if she eats this or that just to let people know that she's serious.

The region of the country you're in can make a lot of difference. While in Florida we'd all but given up on eating out at more than a couple places. Here in Washington there are restaurants all over the place at which she can eat without worry.

I know this seems like a lot of hassle right now, but after you get used to the tweaks in your daily routine it becomes a lot easier.

A few tips we've picked up along the way:

The price markup of a food product is proportional to the size of the letters that proclaim it "GLUTEN FREE!". It's best to stick with naturally GF foods, but if you need a GF substitute try to find a quiet one rather than one that screams it at you.

iPhone apps "InRFood" and "ShopWell" are incredibly valuable - you can scan a barcode or search for an item, and configure it to show you an alert if the item contains gluten. Scan EVERYTHING for a while; some of the things that contain gluten could surprise you.

Things to look for on product labels: there are a million things, but some of the more tricky ones include maltodextrin and vinegar. Both of these can be from a gluten or non-gluten source. When in doubt, avoid.

Shredded cheese often has flour added to keep it from sticking together.

Pills and makeup can be a source of gluten. My wife has to have the name brand advil, because the generics use a filler that contains gluten.

Beware of cross contamination. We've designated one cabinet in the kitchen for all the gluten-containing foods, adopted a clean-as-you-go policy in the kitchen, and do our best. My wife carries baby wipes with her, and will often wipe down the steering wheel when I've been eating in the car, or the doorknobs after I handle the cat food and go outside to feed the cats.
posted by tkolstee at 7:55 AM on November 13, 2013 [6 favorites]

Best answer: I've been gluten-free for nearly 12 years now, and it's so much easier than even five years ago! It -is- really hard at first; one of my stumbling blocks was expecting the substitute GF food to taste like "real" food. Big mistake. You have to let go of those expectations and just let the GF food be its own thing, if that makes sense. It can still be good without tasting exactly like it's gluten-full counterpart.

At this point, there isn't anything I miss from my old diet. In my experience, it's true that "you crave what you eat." YMMV, of course.

In the end, despite the PITA it can be sometimes, I'm overwhelmingly grateful to know what to avoid. It's so much better than being constantly sick and not knowing why or how to make it stop. You'll get there... it just takes a little time. Be patient with yourself, and try to find a bakery that makes amazing GF cupcakes. :)
posted by ebee at 8:29 AM on November 13, 2013 [1 favorite]

My partner has been gluten free for years now. I just picked up the cookbook Gluten-Free Girl and the Chef, after relying on her blog for baking resources, and that book is doing exactly what it's supposed to. It's a love story with recipes, intended to make people who can't eat gluten fall in love with food (for the first time or again). I still eat bread, and it makes me excited about food. I think reading it might help your approach - instead of "can't" and a feeling of shame or avoidance, it's about embracing what can be eaten.

I wish you luck on this, and congratulations on figuring out the source of so much pain and strife.
posted by linettasky at 9:14 AM on November 13, 2013

Best answer: Since you mentioned restaurants, I just wanted to add that you should definitely tell your server that you're gluten-free specifically, and that it's an allergy and not just a dieting method. Sometimes there are foods that are fine if you hold one or two ingredients, but there is a huge chance of cross-contamination with gluten (that as a customer you wouldn't really have a way to foresee) if the server isn't able to warn the kitchen ahead of time.

In larger kitchens they probably have a "gluten free" kit, with cutting utensils, a cutting board, special spoons, etc, that are kept separate from all the other cooking tools to keep them from being contaminated. In smaller kitchens, they might not have that, and they might actually only have say, one fryer, so literally anything fried is going to have some gluten on it even if the dish isn't purposefully made with gluten. You want to make sure that everyone knows cross-contamination is an issue. For most people that are on more casual diets, maybe as a version of low-carb, they really couldn't care less about the kitchen using an ice cream scoop that is sure never to have touched gluten, etc, and those casual dieters honestly most of the people requesting gluten free -- so make sure that you tell the server/kitchen that it's a serious health issue. A lot of servers now will ask, but some will forget, some are new on the job, some haven't had a lot of gluten free customers, etc.

Also, since other people's reactions seem to get to you -- don't worry about any waitstaff giving you a "look." If they're like me, they're probably thinking, "oh no, what is she going to eat?!" It's not that they are judging *you,* they just know how difficult eating gluten free in a restaurant can be. They don't want you to have a horrible time or to pick at the one item on the menu that doesn't have gluten, both because a miserable table is a difficult table to serve and because they're human and don't want to serve you up a night of misery on a plate. The best way to make sure all goes well with them is probably to tell them right up front that you have an allergy and to be as cheerful/matter-of-fact about it as possible. Not that it's your job to make a server comfortable about doing her job, but that could set the tone and make *you* feel more comfortable.
posted by rue72 at 9:51 AM on November 13, 2013 [1 favorite]

Best answer: This is tough. Personally, I think you should proceed as if you have celiac disease. Everything about your symptoms and family history screams celiac. The negative blood test is kind of red herring given that you weren't eating gluten at the time. The blood tests are useless if you're on a gluten-free diet. Absolutely, irrevocably useless! (That part is *science.*)

It's totally normal to grieve and be frustrated and screw up when you go gluten-free. I've heard some people say that the learning curve on eating truly gluten-free takes about a year. When I went gluten-free, I was grateful to be feeling so much better (I seriously felt like I was given a second chance at life) but there were plenty of days towards the beginning where I left the grocery store choking back tears or was hungrily getting ready to cook and I'd discover a key ingredient wasn't gluten free and end up literally throwing things around the kitchen in frustration and anger. Not to mention the time I realized I'd never eat my mom's cinnamon rolls again. I sobbed a bit over that one.

There is a lot of good advice in this thread: gratitude, being wary of cross-contamination, letting friends help you, eating ahead of time, always having snacks on you and so on.

I wanted to add that it is wonderful that you have such a supportive husband. So many people don't have supportive relatives. Go on to any celiac/gf forum and you'll find stories of women whose husbands refuse to eat GF food and respond by just ordering in pizza for themselves every night or something similarly callous. You'll get through this together.
posted by purple_bird at 10:24 AM on November 13, 2013 [1 favorite]

Best answer: It gets better!

I have a story very similar to yours, the only slight difference being that I actually did come back with gluten antibodies, but they were just under the minimum to "qualify" for celiac. And like you, I too had stopped eating gluten for a while before the test, not realizing how it worked. Going gluten-free made such a huge difference, I never looked back. It was indeed a pain the first year, but it does get better.

I deal by bringing my own GF snacks, ooh-ing and aaah-ing over gluten-containing treats that colleagues bring and then not touching them. They all know I'm gluten-free due to an intolerance, but like a lot of people, the whole "allergy to fundamental ingredient in favorite foods" just doesn't click. You learn to live with it. Complimenting foods you can't eat helps with that. As for restaurants, if there's a naturally gluten-free cuisine you already like, such as Japanese, Chinese, Thai, Mexican (tho it has a bit more wheat), then those can become preferred options. In time, close friends start to "get" it too. I haven't had to deal with showing up at a restaurant only to discover it serves nothing but pasta and having to be Debbie No-Pasta-For-Me Downer in years. You mainly have to be careful with over-eager people who don't quite get it. For instance, one new acquaintance happily suggested an Italian restaurant only to say "don't worry, all their pasta is gluten-free!" When I asked what kind of flour they used, he nodded and said, "like I said, no worries! It's not gluten, it's wheat!" Sigh :) On the flip side, you occasionally get "gotcha" people who are all, "corn has gluten in it. Rice has gluten in it. You're full of it." Shrug, say their chemical composition is different if they insist, move on.

The hardest part is always the first time you tell people. I always get, "what does it do to you?" and unfortunately, saying, "well, the description isn't very pretty" does not work. I've learned to shortcut to "it can contribute to developing colon cancer due to the damage it does internally". Works better than anything else. There are some people who, if you tell them it causes pain, chronic fatigue, and discomfort, will have no compunction about telling you to just deal with it. "It's not that bad. Not like you're going to DIE or anything." Cancer, though, that's convincing. Sigh.

You learn new habits, discover new foods, and no worries, eventually you stop craving wheat. I live next to a bakery in France (yes!!) and the smell of their fresh-baked bread is like, meh. I remember I used to love it. Now I love the smell of gluten-free home-baked bread and find it irresistible. Hang in there!
posted by fraula at 10:49 AM on November 13, 2013

Best answer: Have you read How To Be Sick? I have ulcerative colitis which appears to be exacerbated by gluten and am in the same boat as you -- not willing to eat gluten in order to get the definitive test. I did, however, have the genetic testing, and I have one of the two mutations that can cause celiac, and I have a niece who is full on celiac, so I just am going with the idea of not eating gluten.

Anyway, the book. I've found that her perspectives are very helpful. I can't say that I live each day content to have a chronic illness, but I'm getting there. I'm lucky to live in SF where everyone thinks they're gluten sensitive (or that gluten is bad for everyone) so while it's embarrassing to seem to be jumping on the gluten bandwagon, at least it's relatively simple. But like others have said, I tend to shy away from gluten free substitutes for foods that would usually have gluten, and instead I focus on foods that are naturally gluten free.

Take good care, and please feel free to memail me if you ever want to vent.
posted by janey47 at 11:07 AM on November 13, 2013

Best answer: I know exactly what you're saying. It feels so ridiculously trendy to actually have the issue with gluten when it's such a poseur "allergy" to have. But you have something, and you feel better when you don't eat it, so stick with it.

My story: a few years ago I was finally full-doctor-tested for Celiac and yes, I have it. I felt the same as you. Kind of stupid but also I wanted my goddamned croissants. And nobody took it seriously and I got cross-contaminated SO often and I hate that I have to eat before social events, etc. I hated it, seriously, same as you.

And then about a year ago out of the blue I was diagnosed with ovarian cancer.

And suddenly I wanted to kick scream at myself...for acting like such an absolute baby over Celiac. "Wah, Poor Kinetic was HUNGRY and missing her bagel?"

I'm through treatment and better now.

My point is that perspective can change in a second. Try to frame it to yourself that thank heaven it's only gluten, considering the alternatives.
posted by kinetic at 11:50 AM on November 13, 2013 [1 favorite]

Best answer: I'm gluten-intolerant too, (self-diagnosed and tested negative for celiac disease, like you) and I've recently decided to change my mindset in a small way to see if it makes me less resentful. So far, I think it's working.

I actively smell delicious gluteny foods. My kids love Vegemite on toast, and after I went gluten-free I used to feel annoyed that I couldn't sneak a bite between the kitchen and the table (as I had done since they were babies, jokingly declaring that I had to check it wasn't poisoned).

So now, when I prepare or serve any gluteny foods to my kids, or if we're eating out, I anticipate the smell instead of the taste. I open the bag of fresh bread that I can't eat and take a moment to savour the smell. And then I close the bag and leave it for my kids to eat. I don't seem to... yearn to slather Vegemite on it and scoff it anymore.

I guess I'm trying to reset my senses to make the smell as important as the taste. So far, so good.
posted by malibustacey9999 at 5:03 PM on November 13, 2013

In the last year I've also discovered a food allergy and I totally get the grieving that you're talking about. The hardest parts for me have been around the social rituals of food. My friends and family and I are all very foody and I miss sharing food experiences with them. I also feel a strangely large amount of stress and anxiety around eating foods that I haven't prepared. To help with the feelings of loss around these social occasions and hopefully alleviate this stress, here's some practices I've adopted:
  • I've found a few restaurants near me that I know work for me, so when I go out with friends, I'll suggest one of these restaurants. My friends are usually really happy to choose from my "approved list" and The Allergy isn't an issue for more than a second. We still get to share our fun going out for food experience and I don't have the stress of feeling like I might accidentally be dosed.
  • My partner and I cook at home a lot more, including bringing our own lunches to work, which has tons of side benefits in addition to avoiding the allergen.
  • I've started hosting a lot more dinner parties at my house. If I'm cooking I can choose a menu to suit me and I know exactly what's in the food! Also, it's been great to create an intimate space where we all get to share food together that's different to things we used to do together pre-allergy. Most people never even really notice that it's an allergy avoidance crafted meal, they just see home cooked food shared with friends and so there's no awkwardness.
  • When I go to a big city, I make it a point to research restaurants that will cater to me and then totally indulge.
  • If I go to someone else's house, I definitely eat before and definitely bring some snacks I know I can eat. Most people are totally gracious about this.
  • If I have to go somewhere I don't know, I will absolutely call ahead and talk to a manager. I try to call at a non-peak time and ask for someone who knows about food allergies and their menu items and I will try to determine at least one dish that I am confident is safe. This makes it a lot easier at ordering time on the day.
  • I always have my next meal in mind: either a firm plan in place or a snack on hand. This prevents the over-hungry panic and meltdown.
On a final note, now that I have this, I've started to notice all the other people I know with allergies or sensitivities. I have a fair few friends, co-workers, acquaintances, etc with food problems. There are lots of us out there and we tend to be sympathetic to each other. Once you start to notice this, hopefully you'll start feeling like less of an outcast.
posted by mosessis at 1:35 AM on November 15, 2013

You'll probably be able to relate to this comment from a previous question.
posted by alms at 7:02 PM on November 23, 2013

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