A couple of weeks ago, I was interviewed for an article in Allergic Living magazine. The story will be published in the summer — and when it’s out, I’ll let you know — but some of the questions got me thinking. The reporter was well-educated about research into celiac disease and about the work that some pharmaceutical firms are doing to develop a pill that would allow a celiac to eat gluten again.
“How do you feel about that?” she asked me. I told her the truth: I find the research intriguing, but I’m not interested in taking a pill that would let me eat gluten.
She was surprised. She rephrased the question. I asked her if she was gluten-intolerant and she said that she wasn’t. I explained that many people have said to me, in the six years since I was diagnosed with celiac disease, how terrible it must be to be on a gluten-free diet. But none of those people were actually on a gluten-free diet themselves.
I actually love the gluten-free diet. I don’t cheat on it. I don’t go to dinner with gluten-eating friends and wish that I could eat what they’re eating. And I don’t miss wheat or the other things I can’t have (seriously, has anyone in the world ever missed eating rye?). It’s true that the gluten-free diet solved many of my health problems, but it did more for me than that. It forced me to reconsider everything I’d been putting in my mouth. Before my diagnosis, I never read a food label. Suddenly I had to, and I discovered that there were a lot of things in processed foods that I didn’t want to put in my body. That’s not to say that I don’t have my indulgences. My favorite food groups are cheese, chocolate, and wine. But most of my meals are made from healthful, unprocessed ingredients.
It’s great news that pharmaceutical firms are taking notice of celiac disease, and there are some clinical trials — like the possible celiac vaccine — that I’m watching with great interest. While I’m certainly in favor of pharmaceutical firms doing research into a pill that would let celiacs eat gluten, I’m not interested in taking it myself. Part of that is simple suspicion: I like to know what the long-term effects of taking any medication are. But part is an unwillingness to go back to the days when I had medications for migraines, mouth ulcers, and other health problems. I love that the gluten-free diet cleared up these problems, and I’m not interested in relying on a prescription medication if I don’t have to.
I’m curious how other gluten-intolerant people feel about this. Are you eagerly awaiting results from the clinical trials? Or would you stick with a gluten-free diet, even if there were a prescription that would let you eat wheat?
Great article, Hilary. Something tells me that we’ll see a pill before too long and a huge portion of those with Celiac will take it without question. I’m with you. I’m feeling well through natural means now, not chemical. I don’t know that any pill can replace that.
Beautiful post, Hilary. I couldn’t agree with you more and it’s my mission to teach folks it doeesn’t have to be hard at all … just different. There’s only one reason I do (mostly) want to see a pill and/or vaccine become available. The reason is that medications and pharmaceutical involvement are the only way I see the diagnosis rate of celiac greatly improving and eventual widespread acknowledgment of non-celiac gluten intolerance and sensitivity. It will be the reps that educate the doctors and the patients (e.g., through commercials). Then, hopefully, many of those folks will say, “hey, you mean I can avoid taking this drug by going gluten free?” Then they’ll opt to just eat gluten free and much healthier. So, maybe it will come full circle, but with the majority of the folks finally knowing they have celiac/gluten intolerance/gluten sensitivity.
Shirley
Interesting to hear there is work being done on a pill and vaccine. I need more time to consider whether I would take either. But am thrilled for the option to be there for parents of children who are celiac.
I am not gluten intolerant, but the other half is, and we’ve had this same discussion. His interest in a pill or heck a vaccine would only be to feel more comfortable in a restaurant, or friends and relatives. The fear of well meaning but uneducated folks accidentally dosing him would be reduced. He would not go back to a gluten filled diet though, while he misses some things what those things have been replaced by are things like home baked bread from scratch…which can’t be beat. I agree long term studies would be great for medications. Sadly the pharma companies are cheap and don’t like forking over the money for them.
This was a refreshingly stated and exactly how I feel as I would not want to take a pill to be able to eat processed food again. And no, I don’t miss rye either
. No, I don’t cheat, nor do I miss much of anything except sponteneity. I always ate well and now I am eating RIGHT for me! I do feel much better. My intention everyday is to eat meals that are healthy and 100% gluten free. I couldn’t be happier! Thank you again for this writing.
Thanks for posting this. I’m actually shocked that I am the only that responded saying that I would definitly take a pill to enjoy a meal and not have to ask a million questions about what is in it and how it was prepared. I’m in my late 20′s and having celiac has really taken a toll on my social life. I attend meetings and events almost every night for work and am not able to eat anything. Food is the center of our social get togethers and it really sucks to “be different”. Even when I do go out to dinner, while everyone else is enjoying warm French bread, I have to sit there and watch. When I go out with family and friends we can only honour where I cam eat and I hate putting that burden on everyone else. Yes the diet can be a healthier choice but i would trade in the diet for a “normal” diet that can still be healthy.
If I had been asked 9 months ago when I was first diagnosed with celiac, the answer would be YES! And HURRY!
Now? I’m not so sure. Being able to once in a while have the option to eat “normally” when out with friends and family would be nice (and I’ll admit – as yet I’ve not found a “real” pasta that tastes right to me. There are days when I could, well, not kill for a slice of lasagna… but smack an evil dictator? That I could do.) but the changes in both MY health and my non-celiac but gf husband (I love that man so much – he’s gf at home to keep me healthy, his idea) health are enough to make me pause. I LIKE knowing what is in my food. I’m not so sure I could go back, even if given the choice.
If something existed for gluten like Lactaid for lactose intolerance, I might take it every once in a while for a special treat. I’d much rather just skip the gluten than be tied to some daily prescription medication, though.
I agree with You, Hilary. I wouldn’t take that pill. The diet is not a problem for me, I am celiac for 23 years (I am 25), i don’t even know the taste of “normal” bread, etc.
My reason for not taking the pill is my nerves: ) It is so fixed in my mind that I am not allowed to eat anything ( in my childhood I had very memoriable symptoms that took away my mood of cheating for a life), that I show the symptoms because of my nervousness if there is a chance I ate something wrong before.
This 23 years were enough to get used to it. I would not be able to change
Absolutely not. There is nothing I miss, nothing I would cheat for, not even if I had a pill that assured me I would have no reaction. I would, however, take a pill when I eat out to avoid worrying about cross contamination. But there is nothing with gluten that I’ve not been able to create GF, even to the satisfaction of my non-GF friends.
I do agree with the comment that a pill would ensure more people were diagnosed with CD. Awareness would increase, since our medical system is totally based on money. But I don’t think it is likely these newly diagnosed people would choose GF if they can take a pill and keep eating their same diet. People don’t like change. Unfortunately, I know people with CD who won’t eat GF because they don’t want to change their diet. It’s unbelievable to me, but it happens.
Why can’t they make a pill that stops the IGE reaction to dairy? If there was a pill that would allow me to eat dairy without a reaction, I’d totally be up for that! I miss cheese more than I have ever missed any gluten containing food.
VERY VERY EXCITED!!! i cry at the thought of being to eat all my favorite foods again
Being diagnosed with Celiac Disease for only a month now, I would say no to the pill, too. I do understand Jeri’s point about the “being different” factor, though. Just in this short amount of time, I’ve had to get used to not being able to eat out as much and deal with lots of ignorant people on the subject of gluten (I can’t tell you how many people have never heard of Celiac Disease!). And I’ve about gone cross-eyed reading labels on food items and products. However I don’t like the idea of being a guinea pig for some new drug, nor do I like the idea of putting more money in pharmaceutical company’s pockets. We have no idea what side effects there could be and probably would not know for many years (maybe after the damage has been done). I’d rather stick to what is safe and continue to explore and create fabulous gluten-free recipes!
I think I would take a pill, one like a beano pill, on rare occasions. I have to agree with most of the posts that gluten intolerance has led me to a much cleaner and reasoned diet. I didn’t realize the lack of focus on my diet led to a lifestyle that was to geared towards convenience foods. No wonder I felt like garbage so often.
I think I would save a gluten tolerance pill for the occasional birthday cake and possibly eating out every now and then.
Being diagnosed with Celiac Disease for only a month now, I would say no to the pill, too. I do understand Jeri’s point about the “being different” factor, though. Just in this short amount of time, I’ve had to get used to not being able to eat out as much and deal with lots of ignorant people on the subject of gluten (I can’t tell you how many people have never heard of Celiac Disease!). And I’ve about gone cross-eyed reading labels on food items and products. However I don’t like the idea of being a guinea pig for some new drug, nor do I like the idea of putting more money in pharmaceutical company’s pockets. We have no idea what side effects there could be and probably would not know for many years (maybe after the damage has been done). I’d rather stick to what is safe and continue to explore and create fabulous gluten-free recipes!
i have been diagnosed for 3 years, and would LOVE to be able to pop a pill! the first two years, i was fine! but recently all i want is something that could cure me! even though i see that some people don’t think its difficult, i do! i can’t go to parties were everyone is drinking beer, i can’t go out to the local pizza parlor with my friends, i feel rude not being able to eat any of the dinners when i go to my friends houses when there parents make things, it makes everything so uncomfortable! my school has nothing i can eat, i can’t wait till my mom doesn’t have to make 2 dinners!
i got goose bumps of excitement even thinking that there may be hope!
I would take the pill. Absolutely.
Reintroducing gluten into my diet wouldn’t necessarily mean eating more processed, less healthful foods.
Eating gluten free has made me more aware of what I’m eating. And of course I’m healthier now, not only because I can’t eat out as much, can’t eat a lot of fried foods, or baked goods, or processed food, but also because I’ve healed and can now absorb all the nutrients I need from the food I do eat.
If a pill were developed that allowed me to eat gluten without compromising my digestive system, I don’t see why any of that would change.
On the other hand, I would want to absolutely know that the pill would do me no harm.
Sounds crazy to me. I would take anything, and then eat bread, muesli, pizza and beer every day.
I agree with Hilary and everyone else that agrees with her. If I’m not meant to eat bread, then so be it. At least I know it saves me from quickly digesting empty calorie pastries, bagels and other easy “on the run” food when I’m hungry. I’m 100% sure I’d be 20+ pounds heavier if I didn’t have Celiac and who know what other problems that might cause. I am interested in a celiac pill for when I go on vacation and am not sure of what’s in the food. Other than that, gluten-free is the way to go for me!
I would take the pill. Absolutely.
Reintroducing gluten into my diet wouldn’t necessarily mean eating more processed, less healthful foods.
Eating gluten free has made me more aware of what I’m eating. And of course I’m healthier now, not only because I can’t eat out as much, can’t eat a lot of fried foods, or baked goods, or processed food, but also because I’ve healed and can now absorb all the nutrients I need from the food I do eat.
If a pill were developed that allowed me to eat gluten without compromising my digestive system, I don’t see why any of that would change.
On the other hand, I would want to absolutely know that the pill would do me no harm.
Absolutely not. There is nothing I miss, nothing I would cheat for, not even if I had a pill that assured me I would have no reaction. I would, however, take a pill when I eat out to avoid worrying about cross contamination. But there is nothing with gluten that I’ve not been able to create GF, even to the satisfaction of my non-GF friends.
I do agree with the comment that a pill would ensure more people were diagnosed with CD. Awareness would increase, since our medical system is totally based on money. But I don’t think it is likely these newly diagnosed people would choose GF if they can take a pill and keep eating their same diet. People don’t like change. Unfortunately, I know people with CD who won’t eat GF because they don’t want to change their diet. It’s unbelievable to me, but it happens.
Why can’t they make a pill that stops the IGE reaction to dairy? If there was a pill that would allow me to eat dairy without a reaction, I’d totally be up for that! I miss cheese more than I have ever missed any gluten containing food.
I think I would take a pill, one like a beano pill, on rare occasions. I have to agree with most of the posts that gluten intolerance has led me to a much cleaner and reasoned diet. I didn’t realize the lack of focus on my diet led to a lifestyle that was to geared towards convenience foods. No wonder I felt like garbage so often.
I think I would save a gluten tolerance pill for the occasional birthday cake and possibly eating out every now and then.
Being diagnosed less than 1 month ago, I would definately take a pill. I have always enjoyed healthy eating, so that’s not a problem for me.
However, the inconvenience of being gluten-free is completely frustrating. Having a busy schedule and not being able to just grab something to eat wherever I may be… can’t eat at social gatherings, personal or business… it is truly a challenge & one that I am still learning. I think if a pill does become available, I wouldn’t give up a gluten-free diet, but would definitely take advantage of the benefits for eating out on occasion and any event I may otherwise be starving at!
I would, in a heartbeat. For so many reasons. I miss rye, a lot. It’s my favorite bread-love reubens! I live in Seattle, and there’s this bakery down by the waterfront that has the best sourdough in the world. $2 for a 1lb loaf, still hot from the oven. My daughters and I would buy one, grab a little paper cup with whipped butter in it, and wander around the piers tearing pieces of it off munching it. You can’t replace memories like that by going to a gf bakery. It is not the same. But then, it would have been easier for me to give up meat than wheat.
Also, I’m a foodie and worked in the industry for 25 years-decorating wedding cakes, the whole nine yards. To not be able to go out to eat has crippled my social life, and I’m sick of the 3 restaurants I can count on-so are my kids.
And the expense!!! Having to buy certain brands of everything has almost doubled my grocery bill. I already ate very healthy, if anything I consume more processed foods now with the replacement gf stuff. I always read labels. I think some just adopt the “I do this because I want to” stuff and I for one just don’t buy it.
To each their own, but sign me up for the pill!
I am both gluten- and lactose-intolerant. (There are other restrictions I have too.) When I go out to eat, I like knowing that I can order a dish that has very little dairy in it and pop a lactaid pill to counteract what little may be in the dish (butter that sautéed onions, for example). The lactaid only partially works for me, so I have only ever had a large dose of dairy once since being diagnosed with IBS. What it does do, though, is it opens up more on the menu for me, more options.
If a pill were made to help with gluten-intolerance, even if only partially, like the lactaid does for me (and the article seems to imply this pill might work similarly in efficacy), I would love to keep it in my purse, to have for those times when I am stuck unexpectedly out and have to survive on apples from a corner store (or something as satisfying).
I doubt I would eat a gluten-filled diet with the pill, but I would enjoy being social once again a little more, as food and sociality are hugely connected. Just not having to worry about stocks, sauces, or gravies would be terrific and I would like to find myself at a party unexpectedly and be able to have a beer with everyone else or not question a friend of a friend at a dinner party as to exactly what is in that soup? Or simply refuse someone who doesn’t speak my language when they offer me food.
I don’t understand why anyone who is gluten-intolerant would be against using it completely (if fully researched and proven safe). To me, the emergency flexibility would reassure me before leaving my house: knowing I can stay the night at a friend’s house, knowing if something happens, I can figure out a hunger solution. I worried when the snow piled up and I thought I was going to lose electricity permanently: would an emergency location I went to with a generator have food that I could even eat?
I suppose an analogy is this: I carry my inhaler with me everywhere, if I leave the house without it, I think about it and it stresses me out, even as I very very rarely use that little blue pump.
If not taking the pill is about eating healthy, the argument confuses me because eating healthy means what to people exactly? If it is about eating less processed foods, than yes and no: if I’m in a pinch, stuck out of the house and needs to eat, I’ll order my highest calorie meal I can to keep me going: french fries and a coke. Not exactly good for you or low on processing, but oddly enough contains the most digestible calories I can find on the menu, even if ordering this twice in a day might cause cramping.
Being gluten-free does lead one to read the labels and think about what you eat, so I can understand that argument, but only partially: this can be done with gluten as well.
I don’t want to ‘cheat’ on my diet, but I would love to be able to be flexible, to find a meal when I desperately need one, to be able to not ask what was put in a meal, to not have to refuse someone offering me a dish they made to thank me for work I did for them, etc… I think I would be more social knowing I had this flexibility in my life and I think I would be healthier as well, being able to eat full, substantial meals when I’m running low on energy/calories and not able to get home.