The notion of going gluten-free in the absence of celiac disease is controversial. I posted a letter to the New York Times editor on our Facebook page last week, and it stimulated a number of passionate responses (I love passionate fans!).
On the one hand, there seems to be a growing number of people who have tested negative for celiac disease, but have experienced amazing health benefits by going gluten free. I am constantly hearing from people, including two of my own family members, who have tested negative for celiac disease, but swear by the gluten-free diet. Although it hasn’t been well studied, gluten intolerance is a valid phenomenon that occurs when a person tests negative for celiac disease but experiences a variety of negative symptoms after eating gluten. To me, the solution seems quite straightforward. We live in a free country where there are a lot of food options and a lot of wonderful nutrition advice. So, naysayers be damned: If eating gluten-free makes you feel better, why the heck wouldn’t you do it?
On the other hand, there are people who regard the gluten-free diet as a fad weight-loss mechanism. Recently, the Glamour Magazine online blog posted a reflection on the gluten-free fad, and many of their readers left comments about starting the gluten-free diet in order to lose weight and feel good. Stars like Gwyneth Paltrow have popularized the gluten-free diet in the absence of a medical diagnosis, and a lot of people have jumped on the bandwagon. This has had some good and some bad effects.
First, the good: companies small and large have perceived the increased demand for gluten free products, and they have responded! We now have gluten-free Chex, Betty Crocker mixes, and Yoplait yogurt thanks, in part, to the fact that so many people are going gluten-free. While these products may not be organic or uber-healthy, it is nice to see some mainstream options that we can depend on finding just about anywhere. The gluten-free section in my local supermarket has dramatically increased in size. What used to be one small shelf is now an entire aisle! My local food co-op puts special labels on everything in the store that’s gluten free. In addition, the people in my life hear about the gluten-free diet more frequently, and they say things like, “Hey, Crystal, did you know that Starbucks now has gluten-free chips?” (Thanks for the tip, Laura! The sweet potato variety is delicious.) In my view, this is all very positive and directly attributable to all the buzz surrounding the gluten-free diet. Even the Elisabeth Hasselbeck book drama served to increase gluten-free awareness, but more on that elsewhere…
Now, the bad: the gluten-free fad has led some people, including doctors and chefs, to take celiac disease less seriously. I have spoken to restaurant chefs that believe that the gluten-free diet just isn’t a “big deal.” The fad followers order gluten-free salad, but want a little of the glutenous salad dressing on the side (come on, it just tastes better!). When this happens time and again, the kitchen and wait staff begin to think that a little gluten is ok. I once had a waiter bring me a salad with a big hunk of Italian bread sitting right on top. When I reminded him that I needed a gluten-free salad, he quickly scooped up the bread and put it in his pocket. Then, I had the opportunity to educate the waiter on what gluten-free really means. (No crumbs, please!) But seriously, this is a very real problem. An archived newsletter from the National Foundation for Celiac Awareness describes an incident where a woman went to her physician complaining of celiac symptoms, and her physician refused to do the test and told her that the gluten-free diet was nothing more than a fad. Luckily, the patient had done her research and convinced the doctor to do the test, but the research shows that the majority of people with cealic disease have never been tested.
Taken together, these findings leave me feeling ambivalent. The gluten-free fad has affected those of us with celiac disease, but it hasn’t been all good or all bad. I can’t even argue that the bad (people taking us less seriously) outweighs the good (increased awareness, more gluten-free options, and increased detection).
However, I can say one thing for certain: if following a gluten-free diet makes you feel good, then welcome to our blog! I’m glad you’re here.
Photo credit: Whatsername?
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{ 7 comments }
I don’t have a problem with the non diagnosed eating gluten free. I do have a problem when they lie and tell everyone they have celiac disease. I suffered terribly from celiac disease and to me it seems almost disrespectful to claim you are sick from a disease you don’t have. I do think some of the non celiac gluten intolerants are probably undiagnosed pre diabetics and maybe even full fledged diabetic. That would explain why they feel so much better when they cut out certain carbs.
I don’t have celiac disease but my daughter does. However, I do follow a GF diet because it helps to control my hypoglycemia and yes, it does make me feel better. I don’t “think” I feel better. I do feel better, and I don’t have to carry emergency supplies with me in case I have a hypoglycemic episode while I’m away from home.
I am very unhappy with the attitude of doctors toward celiac disease. If you have been through the torment, like my daughter, of trusting in a doctor and being constantly misdiagnosed then you know that it is very difficult for them to see beyond anything that isn’t printed in a medical journal. The reason most doctors are so behind in understanding celiac disease is because clinical studies are performed by pharmaceutical companies in order to get a drug in the market. No pharmaceutical company is going to pay for a study on a disease that only requires a change of diet and no drugs. As far as doctors are concerned, no data…no disease.
Lately I have been feeling rather put off with the surge of nutritionists claiming that a gluten free diet is unhealthy when most people in this country eat an unhealthy diet regardless of the type of food they eat (Nutritionists are the ones that feed hotdogs, pizza and ice cream to our school children). Some people seem to think wheat is the king of all food and without it you are doomed to poor health. Wheat is just another grain and if you look at the nutritional data on it, it’s really not that good for us. In fact, if you look at the stats on teff or amaranth, quinoa or buckwheat, wheat just doesn’t stand up to the comparison at all. I know that the concern is that people are eating too many of the products made with rice and tapioca flour which are low quality foods. Well, processed food is unhealthy for us whether it contains wheat or not. Pop tarts are not health food just because the main ingredient is wheat. Wonder bread is just wallpaper paste with a few added vitamins. Have you looked at the label on it? 100% Stone Ground Whole Wheat bread has 2 grams of fiber and 3 grams of protein per slice. You’d have to eat an entire loaf a day to get what you needed of just those two nutrients but then, calorie-wise, you wouldn’t be able to eat much of anything else. They have to enrich bread because wheat loses most of it’s value 10 days after being ground. Few people go to the trouble of making their own freshly ground whole wheat bread, so you would be better off by taking a multi vitamin and getting your fiber by eating an apple or a few extra fresh veggies. And there isn’t enough quality protein in wheat to sustain life so regardless of how much wheat you ate, you would still not be getting all the required amino acids that your body needs. Quinoa, Amaranth, Buckwheat, soy all have higher amounts of protein than wheat and they all are complete proteins. I regularly make buckwheat or quinoa pilaf as a side dish. It tastes great and is truly a dish with high quality nutrition. Nutritionists need to get off the wheat band-wagon and start promoting whole food to all dietary groups. The worst thing the USDA ever did to us was turn the food pyramid upside-down. High grain diets regardless of the type of grain, but especially wheat, are making us fat and sickly and the myth that wheat is good for us is just marketing by one of the largest food conglomerates in existence.
I didn’t have any trouble being diagnosed. I was so sick. I weighed 78lbs, had cholesterol of 96, malnutrition and vitamin deficiencies. My small bowel biopsy was positive. I spent 2 weeks in the hospital being treated. That many doctors can’t be all that ignorant. Most know what they’re doing. More than likely if your doctor says you don’t have celiac..then you definately don’t have it. So many of the people who claim to have celiac don’t even have the genes to ever develop it! LOL!
Any diet can be unhealthy if you make poor food choices! The gluten free diet is no exception! It is more difficult to get fiber and the gf products aren’t fortified with vitamins. I know..I lost part of my colon to diverticulitis. More than 20 years of fiberless food!
If hypoglycemia improves with gf then it’s because you cut down on carbs. That’s all! Don’t feel bad. Diabetes is at least as serious and probably more so. It’s also underdiagnosed!
Right on, the increased publicity seems to be both a blessing and a curse.
Crystal, this is really interesting insight. I work with Organic Bistro which makes frozen GF meals, so I have been following this “trend” closely. While I know how much it has gained momentum, this other side of the coin was one I have not encountered much. I can’t believe that woman’s doctor wouldn’t test her!
You’re very lucky Elizabeth that you went to the right doctors. According to the University of Chicago Center for Celiac Disease, the average time for someone to be diagnosed is four years. That’s not from onset of symptoms. That’s after they start looking for an explanation of the symptoms when the prescribed medicines don’t have any effect. I’m not saying it’s the doctors fault. Not too long ago they were told in medical school that Celiac disease was extremely rare and only affected 1 out of every 2000 (or so) people. It takes time for medical opinion to change and it’s all the publicity that CD is getting (good and bad) that is causing the change. From what I’ve read, most people who are diagnosed early have done their own research and suggest the possibility of Celiac disease to their doctors. There are probably thousands of people out there who were told by their doctors that they couldn’t have Celiac disease because it was so rare. I have read countless articles written by people who thought they were dying because of the vomiting and diarrhea and weight loss which disappeared when they went on a gluten free diet. And others whose doctors still told them, without testing, that they didn’t believe it was the GF diet that cured them. And still others who, after they cured themselves, then the doctor wanted to test them but they had to go back on a guten diet, and of course, they refused. I can’t blame them for that. I don’t understand what kind of diet you were on that you blame for your diverticulitis. 20 grams of fiber a day is all that’s recommended. One cup of lima beans has 11 grams of fiber in it, a pear has 8 grams. No one should rely on grains alone of any kind to supply them with their daily intake of fiber or vitamins.
As for the hypoglycemia, I would agree with you if I hadn’t tested the theory myself.
I blame my diverticulitis on a low fiber diet. Plain and simple. I’ve been gluten free for 22 years now. Surprise ..surprise…doctors knew what celiac was back then. I didn’t suggest it to them..they suggested it to me after they did the biopsy for it. It took them about 3 weeks and 2 separate hospital stays for them to get down to business and find it. Yes..they had to stop and think about it for a bit…. but they found it. If they had not have….I think I would have died. I have a classic case of celiac.
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