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Separating the wheat

Managing a diet free of gluten is essential for a large number of people

By Cindy Sutter, Camera Staff Writer

January 30, 2006

Julie McGinnis had some disturbing symptoms. Bloating, painful gas, constipation, bleeding gums, sores in her nose. She had a history of anemia as a teenager, migraines, as well as a few instances of a severe red rash on most of her body.

It was a stressful time in her life. She had been laid off a job she'd held for more than five years and long-term relationship had ended. As a registered dietitian with a master's in nutrition, she began to think she might have some sort of food problem.

"I picked some of the main allergenic foods I thought I might have built up a tolerance to," she says. "I cut out eggs. I got off all dairy. I began to do more on a nutrition supplementation level. I increased digestive enzymes. I went on gut-healing herbs. I was trying to fix this problem every day. Nothing was working."

That's because she overlooked one important food in her eliminations diet: wheat. McGinnis has a problem with gluten, the protein found in wheat and several other cereal grains. Known as celiac disease or sprue, and sometimes called gluten intolerance, the disorder is considerably more common that once thought. A February 2003 study of more than 13,000 people found that 1 in 133 participants had the disease.

"I think this has been one of the sleeping giants," McGinnis says. "I think it has really been around, but no one has been able to put their finger on it. The research is starting to come out."

While the disease is evident in all ethnic groups, it is more common among people of northern European descent. The incidence in Ireland, for example, is believed to be about 3 percent of the population. The disease has a strong genetic component. After her own diagnosis, McGinnis urged her mother, who has the inflammatory bowel disorder Crohn's disease, to be tested. She also tested positive. The only treatment is to refrain from eating gluten.

Symptoms and triggers

When a susceptible person eats foods containing gluten, an immune reaction in the small intestine causes damage, often preventing the absorption of vitamins. In the severest cases, the intestinal lining is virtually destroyed, preventing protein and fats from being used by the body, causing weight loss and stunting growth in children.

The damage can manifest in many ways, however. While weight loss and stomach and intestinal problems are the most common symptoms, other problems such as osteoporosis and iron deficiency can sometimes be the only indicator.

Dr. Joel S. Levine, professor of Medicine, division of Gastroenterology, University of Colorado Hospital, explains it this way:

"You have 25 feet of small intestine. In many, the disease is confined to the first part. The rest is normal. The first part is where you absorb calcium, Vitamin D and iron. The rest makes up calorie absorption. (Some patients may) have few gastrointestinal symptoms, but they still get osteoporosis or iron deficiency."

Other complications can be a blistering skin disease called dermatitis herpetiformis and an increased cancer risk, especially for intestinal lymphoma and bowel cancer. In some people, the damage to the intestine from celiac disease can also cause lactose intolerance, meaning that a person is unable to digest dairy products. The disease also is more common among people with autoimmune disorders such as lupus, type 1 diabetes, rheumatoid arthritis and autoimmune thyroid disease.


A greater awareness of the role gluten problems can play in the body has led to more frequent diagnosis of the problem, says Dr. Pierre Brunschwig of Helios Integrated Medicine in Boulder.

"We're diagnosing the mildest cases now," he says. "Before it was the moderate to severe. That's a great benefit to people who have had symptoms, but not classic celiac-sprue symptoms."

Herein lies some differences of opinion and practice. First to terms: Some use the terms celiac and gluten intolerant more or less interchangebly, calling lesser gluten problems gluten sensitivity. Others, such as Levine, defines celiac as an inherited disease associated with damage to the gastrointestinal tract and gluten intolerance as problem digesting gluten that may not be inherited.

Levine relies on two blood tests that show antibodies to diagnose celiac, sometimes also using a biopsy of the intestinal lining that is examined for damage. Brunschwig uses a stool test, which he says picks up antibodies sometimes missed in the blood test, as well as a genetic test that he says indicates whether or not people have genes that predispose them to gluten problems.

"It's tricky," he says. "There are a fair number of people who have the gene for gluten sensitivity or celiac, who have stool antibodies for gluten protein. ... If you look for the same antibodies in the blood, they turn out to be normal. There's still a notion among some GI specialists who say you can't diagnose gluten sensitivity without a biopsy of the gut. While that eliminates the most severe forms of gluten allergy, celiac-sprue, it doesn't eliminate the lesser form."

Levine is skeptical of both the genetic testing and the stool tests.

"I don't think there's scientific evidence that these stool tests are of any utility," he says.

Subtler effects

Brunschwig says some symptoms for gluten problems are atypical, such as hair loss, neurological conditions and autoimmune conditions.

"I'm looking in these places and finding it more," he says.

Chronic fatigue and a metabolic condition that involves the making of blood cells sent Todd Smiedendorf to Brunschwig. He tested positive for gluten sensitivity and has been on a gluten-free diet for about two months, which he believes is helping.

Shelli Dimig has fibromyalgia and had experienced severe problems with bloating that landed her in the hospital. After testing positive for gluten problems, she began a gluten-free diet, which she says has improved her health.

"What I've noticed is, I don't feel like throwing up at night anymore," she says. "I haven't had that really bad stomach bloating problem. Those two things alone are very important. I've been sleeping a lot better. That is huge. I just seem to sleep really well at night again. It's been 16 years since that happened. I think I have a little more energy. (My) mood's just happier."


Although celiac is becoming better known, there are still some big questions about the disease. Some people who test positive for antibodies to gluten never develop symptoms. And, as in McGinnis' case, stress can be a trigger.

When antibodies are present, Brunschwig advises going gluten free.

"We can't tell the likelihood of the disease progressing," he says. "You're playing with fire if you decided to only be partially gluten free, because of the propensity of gluten allergy to trigger autoimmune diseases. Once it's triggered, the genie may be out of the bottle."

He says the range of response to gluten varies widely.

"You can have people who are not very sensitive. They manage to tolerate small amounts. They're not punished severely if they stray. (Then there are) people who can have trace amounts that tip symptoms in a big way. They know clearly they've gotten into something with gluten in it."

Living with gluten problems

The good news for those with gluten problems is that avoiding gluten can pay big dividends. Even people with severe intestinal damage are likely to see healing. Some notice a difference right away when they change diets. Others may not see big results for three to six months.

The biggest drawback is that adhering to the diet is difficult.

In addition to wheat, celiacs must avoid barley, rye, spelt and triticale. Cross-contamination may occur in other grains, especially oats, and many products contain wheat in disguised forms such as hydrolyzed protein. New food labeling laws that went into effect this year should make it easier to find such ingredients, but it's still difficult. Soy sauce, for example, often contains wheat.

Smiedendorf says the most difficult thing is "the mental energy it takes to plan."

That and going to restaurants and meals at friends' houses.

"Socially, it gets tiring to explain it to people," he says. "(They wonder) why can't I just go to their house and eat what they serve."

Dimig's children came out positive on the genetic test, and she's keeping them on a gluten free diet. Last weekend, she went to the store and bought $80 worth of glass containers to freeze meals in advance and pack her son's lunches in.

McGinnis has written a cookbook with gluten-free recipes for traditional Jewish foods. The matzo was particularly difficult, she says. She's currently looking for a publisher.

Going gluten free has gotten easier. Natural foods stores increasingly stock gluten-free breads and pizza crust, and awareness is growing.

McGinnis would like to see restaurants step up and make dining out easier. Locally, Rhumba and Zolo will serve gluten-free dishes on request, she says. And Sunflower Restaurant's staff understands gluten issues.

Although it's been difficult, McGinnis says the gluten-free diet has been worth the effort.

"I had an immediate change," she says. "So did my mother."

Contact Camera Staff Writer Cindy Sutter at (303) 473-1335 or


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    • I have the same symptoms.  These symptoms have overlapped other issues that I have and have been left untreated for far too long. Now the pain has gotten worst. My GP believes it's my hiatal hernia.  I have pain below my breastbone, pressure pushing up my chest/throat, dizziness and nausea. 
    • Usually I'm using apps to tell me what celiacs have thought about the restaurants in the area and repeatedly eating at a few different places I haven't gotten sick. Now that I think about it, gluten was a definite possibility. I ,however, just got all negative results from all the following tests so I'm guessing I'm doing ok on that front. -Basic metabolic panel -Liver enzyme panel -CBC -Serum IgA -Tissue transglutaminase(tTG), IgA -Tissue transglutaminase(tTG), IgG -Thyroxine(T4), free direct serum -Thyroid stimulating hormone I thought the same thing about positive antibodies and non-celiac sensitivity reading this; l'm seeing his nurse practioner in two weeks so I'm going to take this and basically argue with what he said and see how that goes haha. I'm gonna guess not real well. I'm going to push being tested for other autoimmune diseases in addition.  
    • I was dx with duoedenitis end of August. No mention of a stomach, esophagus or duoendal ulcer. Just a small hernia. Less then 2cm. But I have a LOT of pain right below the breast bone and I jumped when it was recently touched on exam. I can even feel a small bump in the area. I feel so dizzy and unwell, like some kind of bacteria is invading my brain and am very queasy still.  My heart still feels weird too.  Bloodwork normal, a bit low on protein which is unreal because I get a ton of it but it is always is low if I have not eaten. Mildly elevated myeloycytes and basophils. My GI will probably not see me for a week or two, my primary care put me on sucralfate.  As soon as the food hits my digestive system I feel really weird all over, stomach, chest, throat, head. Just feel like I have this horrible thing infecting my body.  Did anyone feel ulcer pain and have it NOT be an ulcer? I suppose one could have developed since August. 
    • Hi AWOL, Since you weren't able to complete the 2 weeks gluten challenge for the endoscopy the results are not necessarily reliable.   So to be err on the side of caution I think you should assume you have celiac disease.  Your doctor should not assume you don't have it either since the challenge was not completed.  He has no proof that you don't have celiac disease.  He does have evidence that you have negative reactions to eating gluten though.
    • Hi Ironic Truth, Thanks for Replying. Wow I get bad joint pain too. So my opinion especially if he is eating gluten is to get him tested. I wish I had been tested when I was eating gluten 8 years ago .  I had tried 8 years ago initially to figure out what the heck was going on with me and my immune system. I started with a GP, went to Allergist/Immunologist etc. I gave up 4 doctors later when nothing seem to be found and you sense they start thinking lady you're a nut job . My cousin a diagnosed Celiac took over 2 years to be diagnosed and she is a nurse. My husband said for years "I think bread is bad for you" and in a desperate attempt to help myself -I gave up wheat after 2 weeks felt better 2 months later I went total gluten-free and felt very much better that was 4 years ago. So I have suspected NCGS or Celiac for a few years now. However getting someone to test you for it when you were classified IBS 20 years prior-well as is chronically heard on the forums here is perhaps the biggest challenge of all. One then just finally says ok I will just try this gluten-free thing myself. I was gluten-free for 3 1/2 years and improving. Then  I got gluten-ed in March of 2016 and I had worse symptoms then ever the joint pain arrived. I went to a new allergist who refereed me to another Allergist/Immunologist who deals with Celiacs and Food Intolerances. I did see a Rheumotologist in July 2016 since the muscle and joint pain was still lingering, who tested me and reported no antibodies. Back to the specialist who did more test and suggested the gluten challenge. It's likely me failing to complete 2 weeks caused it but the symptoms got real bad and I thought I'm going to have worse issues if I don't stop this.  Today my fingers are just starting to heal they were peeling during the gluten challenge among all the other symptoms I get, which I attribute to dehydration. The dry peeling fingers did not improve until I got the IV the day of the scope. Bizarrely I was looking forward to the scope hoping I'd get an IV with Meds and fluids becaus eI felt I needed it. I did see one abstract, I can't get my hands on the full article as you stated their is a link: Dig Dis Sci. 2005 Jan;50(1):126-9. Celiac disease and intestinal metaplasia of the esophagus (Barrett's esophagus). Maieron R1, Elli L, Marino M, Floriani I, Minerva F, Avellini C, Falconieri G, Pizzolitto S, Zilli M So I will pursue the path of monitoring the  Barrett's. Despite no official diagnosis for me, you are right Gluten is bad for me, I should avoid it, I will, and I'll stay on the forums. Good luck with you Boyfriend he is lucky to have you looking out for him.
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