FeaturesJune/July 2014 Issue

10 Celiac and Gluten Myths Busted

We call on the experts to dismantle misinformation about celiac disease and gluten sensitivity.

Whether you’re just starting the gluten-free diet or you’ve been gluten-free for a while, you’ve likely heard a lot about this special diet, not all of it reliable. Questionable posts on the Internet and dubious advice from well-meaning friends aren’t helpful and may even cause harm.

We asked leading experts to refute some of the most prevalent myths out there. We know you’ve heard them. So here’s the truth—the real deal—about going gluten free.

gluten myths

MYTH #1: If you have celiac disease or gluten sensitivity, you have stomach issues.

FACT:Gastrointestinal symptoms are common with these conditions but some people have little or no GI problems—even when there is damage to the lining of their small intestine.

“Typically, digestive issues, such as abdominal pain, diarrhea, constipation and gas, are seen more often in children,” says Lara Field, RD, a pediatric dietary consultant and owner of FEED (Forming Early Eating Decisions) in Chicago. “Adults with celiac disease or gluten sensitivity typically have other symptoms, including iron-deficiency anemia, osteoporosis, infertility or migraines, to name a few.”

MYTH #2: A few crumbs of gluten won’t hurt you.

FACT:For those with celiac disease, even a few crumbs of gluten are harmful, says Tricia Thompson, MS, RD, founder of glutenfreewatchdog.org. For most, a safe level of gluten is under 20 parts per million.

Suzanne Nelson, MD, MPH, a pediatric gastroenterologist in Glenview, Illinois, says that someone with non-celiac gluten sensitivity may be able to tolerate a small amount of gluten. “Celiac disease requires you to be 100 percent gluten-free, so you don’t run the risk of developing serious complications,” she says. “The research is still evolving with gluten sensitivity. You might be able to ingest small amounts of gluten without harming yourself.”

MYTH #3: It’s okay to try the gluten-free diet without doing any diagnostic testing first.

FACT:Doctors recommend that individuals get tested for celiac disease before they begin the gluten-free diet. Once you’ve started the gluten-free diet, a blood test won’t be able to detect celiac antibodies. This means test results aren’t reliable and you won’t know for sure whether or not you have celiac disease.

“It is important to know if you have celiac disease because it affects how strictly you need to be gluten-free,” Nelson says. “And celiac disease can have long-term health implications that are important to be aware of.” Celiac disease increases the risk of other autoimmune conditions, as well as osteoporosis, anemia, infertility, neurological diseases and, in rare cases, malignancy.

MYTH #4: Non-celiac gluten sensitivity is caused—of course—by gluten.

FACT:Experts aren’t sure. The term gluten sensitivity refers to individuals who don’t have celiac disease but whose symptoms improve while on the gluten-free diet, says Nielsen Fernandez-Becker, MD, clinical assistant professor of gastroenterology and hepatology and associate director of the Celiac Management Clinic at Stanford Hospital. But gluten might not be to blame; it could be a different component of wheat.

“Clearly, more research is needed to sort this out,” she says. “The mechanisms by which gluten causes symptoms are not well understood. It’s not even clear whether gluten is the culprit in this condition. Wheat sensitivity may be a more appropriate name.”

MYTH #5: If you take a gluten-digesting aid before a meal, it’s OK for celiacs to eat some gluten.

FACT:Certain supplements—such as GlutenEase, Gluten Digest and Gluten Freeze—contain an enzyme that can aid in digesting gluten but these should only to be used in addition to a strict gluten-free diet. “The only effective therapy for celiac disease is the gluten-free diet,” Fernandez-Becker stresses. “There are some gluten-digesting enzyme products being developed for therapeutic use but these are meant to supplement dietary gluten exclusion.”

MYTH #6: Spelt is an ancient grain that is naturally gluten-free.

FACT:Spelt is a form of wheat and it is not gluten-free. “Well-intentioned store clerks may tell individuals with gluten-related disorders that they can eat spelt but they are wrong,” Thompson says. “In terms of plant taxonomy—think back to high school biology—spelt is a member of the genus Triticum L., which contains 19 species, including common wheat, durum wheat and spelt. It also includes kamut, freekeh and faro. All these grains are closely related and they should not be eaten by anyone who cannot tolerate gluten.”

bread crossbones

Iodrakon | Dreamstime.com

MYTH #7: If you test positive for celiac genes, you have celiac disease.

FACT:The genes HLA-DQ2 and HLA-DQ8 appear to be necessary to develop celiac disease. However, these genes are present in about 30 to 40 percent of the general population and only a small fraction develops celiac. “The bottom line is that having these genes doesn’t necessarily mean you have the disease. It just says you are at risk for developing it,” Fernandez-Becker says.

MYTH #8: The gluten-free diet helps you lose weight.

FACT:Many gluten-free processed foods (cookies, muffins and other treats) are made with rice flour, tapioca starch and potato starch, which are low in vitamins, minerals and fiber. “These refined carbohydrates break down quickly and you soon get hungry again,” Field says. “This lack of fiber may lead to overconsumption of refined starches and, likely, weight gain.” In addition, many gluten-free packaged items contain more calories per serving than their wheat-filled counterparts.

MYTH #9: You can’t have celiac disease if you are overweight.

FACT:Underweight, overweight, anyone can have celiac. “People with celiac disease come in all shapes and sizes. It is possible for an overweight or even an obese person to develop celiac disease,” Fernandez-Becker says.

MYTH #10: Gluten can be absorbed through the skin.

FACT:“There is no evidence that this is the case. In order for gluten to trigger inflammation, it has to be ingested,” says Fernandez-Becker. Items like lipstick, lip gloss and chap stick should be gluten free—but don’t toss out your other beauty products yet. Topical products containing gluten, such as shampoo, should be safe, as long as they are not ingested. That being said, some individuals with celiac disease or gluten sensitivity are sensitive to topical gluten and develop a skin or scalp rash or inflammation upon contact. These people should avoid personal care products that contain gluten.

Comments (16)

I too, agree that Myth #1 is not a Myth! I am 52, have had severe constipation, bloating, diarrhea, and nausea for years, starting after I had my gall bladder removed at age 27. Did the gall bladder surgery cause my gluten sensitivity, dairy allergy, egg allergy, and yeast sensitivity? - maybe. Or maybe it's genetic - other family members are the same. If I cheat and have gluten or dairy I get painful flare-ups of these symptoms. Before I was diagnosed 5 years ago by a wonderful west-coast treatment center I lost 60 pounds being sick all the time. Then I discovered GF baked goods and gained 80 pounds! I am now forgoing rice, tapioca, and potato flour, and eating mostly fruits, vegetables, and protein. I have lost 30 pounds so far in the last 5 months. I hope the medical community will start listening to us so that we can be heard. And Living Without? - Please stop featuring baked goods so prominently!!!

Posted by: EllyBelly | November 14, 2014 6:38 PM    Report this comment


Posted by: morningglory | November 12, 2014 10:29 PM    Report this comment

I had suffered for at least 10 years with gastro-intestinal issues, including extreme pain and bloating. Doctors told me it was all in my head and I needed to be less stressed!
Finally, after a night of being awake all night in agony, I went to a walk-in clinic and the doctor there told me he would start me on a series of tests. I had migraines, was anemic (borderline), except after giving birth and of course had serious bloating, gas and a lot of pain. With this doctor, who believed I had a physical issue, I was diagnosed with Celiac disease. That was 18 years ago, and he is still my GP! He was my savior! I gained a fair amount of weight once I began eating gluten free, as you stated, gf foods are composed of rice flour and used a lot more fats and eggs to result in a nicer texture. I have also had people comment that people like me are supposed to be skinny! I was underweight before I was diagnosed. Often I hear people who state that they eat gluten-free and have lost weight....I am sure they are eating white carb free, as I also lost weight by cutting out all starches. Now, however, I am living healthy by eating more veggies, fruits, protein and smaller amounts of the high sugar/fat-filled gf foods. Regular exercise has also become part of my healthy life-style.

Posted by: LindaD24 | November 12, 2014 5:08 PM    Report this comment

the #1 Myth is not a myth in my case. I am 75 years old and found out a couple of years ago that if I cut out wheat in my diet, my really soft stools and constant gas for ten years and now my my bloating stomach with pain, goes away. Symptoms or not seems to vary from person to person. In my case the symptoms apparently increase with time. especially when I went to whole wheat instead of white bread it seems. Now I am gluten free and all of those symptoms are GONE, unless of course i eat a particular food that may cause gas for a few hours only.

Posted by: lonnie39 | November 12, 2014 12:00 AM    Report this comment

the #1 Myth is not a myth in my case. I am 75 years old and found out a couple of years ago that if I cut out wheat in my diet, my really soft stools and constant gas for ten years and now my my bloating stomach with pain, goes away. Symptoms or not seems to vary from person to person. In my case the symptoms apparently increase with time. especially when I went to whole wheat instead of white bread it seems. Now I am gluten free and all of those symptoms are GONE, unless of course i eat a particular food that may cause gas for a few hours only.

Posted by: lonnie39 | November 12, 2014 12:00 AM    Report this comment

The Editors of Gluten Free & More seem to have touched a nerve with the image attached to this article of the young woman with a measuring tape around her waist. If you actually read the article, it states that the MYTH associated with the GF diet is that it's for weight loss but that for a variety of reasons, it may actually cause weight gain. The image was supposed to be representative of the myth, not the reality. Unfortunately, it appears that a number of people are viewing the image and assuming that we are advocating gluten-free as a fad diet . . . Nothing could be further from the truth. As such, we have removed the image from the article as it seems to give the wrong impression. - Moderator

Posted by: LW Moderator | November 11, 2014 9:30 PM    Report this comment

Pame, Betteernow and SJR, did you read the full article? What about #8 and #9?

Posted by: GFLife | November 11, 2014 1:38 PM    Report this comment

I too find it distressing that a magazine that is for celiac etc doesn't seem to get it. I have had people say well you can't have celiac because you aren't skinny and only skinny people have that. Or even family that think well you can have a little bit of wheat right?And just to point out one other thing. I really hate the name Living Without, it is a downer rather than uplifting. How about Living Gluten Free, there are so many other names that don't say you can't have this. I stopped getting your magazine even though I liked it because it was a montly reminder in bold print and I just couldn't take seeing it anymore. I don't think I am alone on that

Posted by: Pame | November 11, 2014 1:02 PM    Report this comment

Hi, I am fairly new at this problem. My doctor sent me for a scope at both ends!! to find out what my stomach issue is, as this has been a long time issue. I am 60 and started with issues when I was pregnant with my first child at 20 years old. I have not had a doctor that has been able to help me with these issues. I have tried many diets for ulcers, which is what I have been told more than once that I have. They never seem to help much. This past year the problem has increased. Constipation was a big problem, because I take a lot of pain medication. I have Degenerative Disk Disease in my neck and upper spine as well as osteoporosis. I have a thyroid problem, and 50% of my carotid artery is block, so I take a cholesterol pill as well. Now the doctor says I am suffering from mal-nutrition as I have mal absorption syndrome also. So when I went back to the doctor to get the results from the test, he told me to go on a diet, no wheat, corn, soy, dairy, and no GMO products. Well, I was in shock. This was beginning of summer and what was I going to eat?? We camp a lot in the summer and have a lot of hotdogs etc. Well, I changed my diet....lost about 20 lbs., had already lost 10 lbs over last winter...just not feeling good. So I did the diet for the 8 - 10 weeks I told him I would.....WOW, I really did feel better. So when I went back to see him, I looked right at his face and asked if I had Celiac Disease. He said we don't like to call it that anymore. You have a wheat allergy. I can tell you, I have far more that a wheat allergy. I went back to the doc about 6 weeks ago and asked why my nails were not growing and were brittle, this is when he told me I was suffering from mal nutrition, so along with one hand full of pills, come another handful. I now do my own reading and looking or recipe's and don't seem to have as many problems. I still have some issues with what I eat but I am narrowing down the list slowly. I find if I eat something that I should not have, I suffer for at least a week. But reading these posts, I am having the new fad diet thing throw at me by my own family. My brother thinks its all in my head! I told him, then he should be the living with a neverending stomach ache. I feel like a real pain in the but when asked to some ones house for dinner and have to ask what they are having.

Posted by: Muriel M | November 11, 2014 12:28 PM    Report this comment

I am 57 and been GF for 5 years. I had the gastro issues and it was like a knife in me with the pain. I had the testing for Celiac, endoscopy, colonoscopy etc and nothing was found. But since going GF I do not cough my head off, have pain, or the mucus that chokes me each time I eat wheat or any form of it. I did lose weight and went anemic on the GF diet, now I try to pack on the pounds by eating other things, and take iron supplements. It isn't a weight loss I want at all. So to say it helps you lose weight is wrong, this is not a diet for that..it's for us to be healthy. And it's a fallacy to say you pack on more weight, each body is different in how it reacts to being GF. I lost weight that I need, I am not wanting it to lose weight as I need to put weight on. I only absorb 1/3 of my nutrients too, so I eat constantly. This article is wrong on many issues and as others have posted using a measuring tape and a young girl is wrong. We are doing this diet for survival.

Posted by: Debra57 | November 11, 2014 12:27 PM    Report this comment

Myth 1 I am 67 and have celiac sprue and all the symtoms the article refers to for children plus the adult problems....and I am in the process of tests for intestinal problems now....I'm extremely careful with products I buy, places I eat, and products I use every day for cleaning , bathing etc. Within 20 min. of eating or exposure to something I shouldn't have causes abdominal pain, diarrhea, constipation....the works!! Sometime the result of a restaurant staff member that doesn't realize the importance of special care with cooking for gluten free ...or a waitress that makes the salad...puts on croutons....then removes them from the salad and returns it to the table....something that small can set off symptoms.
I'm thankful that "Gluten Free" has become important to more products on the grocery shelf..like Betty Crocker and General Mills.....I have no problems so far....but I still continue to check labels on everything. Gluten free prices are coming down and it makes it easier to find products ready to use.....Thanks to Bobs Red Mill for flour and oats that I can use .....so far successfully !! There are many more brands out there that are doing a great job ....Thanks to all ....and all of you at Gluten Free & More...for getting the information out there....I learn with every article !!!

Posted by: trosenut | November 11, 2014 12:04 PM    Report this comment

In regards to Myth #1, I am 54 years old and still have gastrointestinal problems when ingesting grains. One of my biggest allergic reactions was in 1987 which landed me in the ER. I finally figured it out. It was my shampoo. Back then it was a wheat and barley allergy, Celiacs Disease wasn't diagnosed yet. FYI: you need a proof-reader.

Posted by: cranberrymary | November 11, 2014 10:51 AM    Report this comment

I am also surprised to see a young woman, happily measuring her waist. Really? This is exactly what the current crop of Hollywood celebs is pushing....another fad diet! Go gluten free and lose weight! It's hard enough to try to socialize around food when you have to put up with some who make snide remarks about "fad diets" and as I heard one evening recently, "that food allergy crap". Give us a break and forget about promoting weight loss. Shame on you! This is serious business!

Posted by: Betternow | November 11, 2014 8:34 AM    Report this comment

I am very disappointed with your choice of photo (woman with a measuring tape around her waist) for this story as it perpetuates that gluten-free is a "diet" that people use to get skinny. Celiacs observe a gluten free lifestyle to have a life. I really expected that your publication would understand that.

Posted by: sjr | November 11, 2014 7:41 AM    Report this comment

Myth #10: I have celiac disease and can not have any form of gluten/wheat germ, etc.touch my skin. I have both internal & external reactions. Most people are not even aware of wheat germ being a problem, but people who are diagnosed with celiac disease should avoid it just as a precaution.

Posted by: CindyHaan | November 11, 2014 7:24 AM    Report this comment

Lack of evidence for something does not make the opposite a fact; it makes it unknown. Myth #10 that gluten is absorbed through the skin, may indeed be a myth, but that doesn't mean your conclusion that topical products that don't cause skin rashes should be fine.

FACT: Many celiacs DO react internally to shampoo and other topical products. Many theorize that what touches your hands or rinses down your face can very easily touch your lips and be ingested. Misguided advice like this is what caused me to spend months looking for cross contamination in my kitchen, stop going out to eat entirely, and live in frustrated, isolated misery for a couple months, when it was my shampoo that was making me sick. I have repeatedly gotten sick (not with skin rashes, but with GI and neurological symptoms) off of shampoos, conditioners, lotions, and other topical products that contain gluten. This is (sadly, stubbornly) a tested, repeatable, proven fact in my life. If I'm having demonstrable symptoms, what's to say others are not having internal damage even if they don't overtly react?

Posted by: sunshinen | May 13, 2014 12:55 PM    Report this comment

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