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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.

Testing

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."

Unknowns

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 sutterc@dailycamera.com.

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    • When it's that high, it almost always means Celiac.  Sure, you can have Crohns, too.  Just like you can have Celiac and diabetes, the common cold or a hang nail.  I wouldn't jump to Chrohns.  I don't think the tTg really has anything to do with Chrohns?  Where did you see that?  Sometimes, a slightly elevate tTg can be elevated from other issues, but >100 is not a " slightly elevated" reading
    • Hi! I'm new here, and I'm looking for some information because I'm having a hard time finding it.  Over Labor Day weekend I got some kind of intestinal bug. I didn't think much of it until the D persisted once a day up til now. I tried a priobiotic but that didn't help much. I have bad anxiety and began to think that I was just anxious and stressed. No fever, no pain, all bloodwork is normal, so no infection or anemia. My mother has 5 siblings and 3 have celiac. One other one had a high result on a blood test but was never officially diagnosed and insists she doesn't have it. So I went to my local health fair and got the ttg-iga test, just in case. My result came back at >100. So I have called and scheduled a visit with a GI for next week. Aside from the recent intestinal issues I have never thought that I had any signs of celiac. I do have dermatographism and have had that since I was 20 (I am 28). I have severe anxiety. I had PUPPPS when I was pregnant with my daughter and it was miserable. It looks much like the skin rashes that celiacs have. Again, didn't think much of it. Because of my anxiety I am terrified that this high blood test is from something else, like crohn's. I don't have diabetes, my liver and thyroid numbers are fine. I think it's much more plausible that this is celiac because of my family history. But my anxiety says "what if it's crohns?" Does anyone have any insight? Is it true that the ttg iga can be elevated from crohns and not celiac? Is >100 pretty definitive of celiac? I didn't know if crohns was the cause if the number would be this high.  I'm just freaked out. 
    • This does say it is for NCGS....so not  for Celiacs.  There is a drug being developed that may actually break down the gluten in the stomach before it hits the intestines.  However, that is still in clinical trials.
    • could be from your neck, or it is, literally, in your head. perhaps a scan is needed.
    • The anxiety thing is there I take teas, and supplements along with CBD oil to help with it, and long walks and exercise when I get antsy. As for the human interaction it is a mix of other mental issues, and the way I feel about people who can eat gluten. If they are not eating I have no issue talking with people. I mentioned I have issues accepting them as the same species when I see them eating. My reaction to gluten is so ingrained in me that it is not a food but a poison, that watching others eat it causes a subconscious reaction where I find myself avoiding them and looking down on them like something from another planet. I end up disgusted with them and walking away, I will go out of my way to avoid people and places where foods like this are present. This is my TRAUMA part of the gluten exposure, and one of the big things I am trying to address in my life right now. I know it is irrational to do so but I end up doing it, I have never cared about others race, religion, or looks, but if I see them eating a gluten/poison, it somehow changes how I perceive them and interact with them and I hate this part about me. It is taking a lot of mental effort to try to smile and treat them as a human, and not something to be looked down upon in disgust. I just recall that mental state that gluten puts me in with my mind and body turning against me and not doing what I will it and the fear comes back. This diet is pretty much like mine, I take Doctors best Magnesium powder in a tea that is actually brewed with st johns wort (never thought much of it) , I use Liquid Health Stress & Energy along with the Neurologic Support they have, twice-three times a day for B vitamins(along with a bunch of other supplements) . I can not digest meats or carbs well, meats it is a issue with breaking them down same with egg yolks, I literally just burp up the undigested meats hours later. I have found the only way to eat them is to boil/slow cook them til they melt then blend them into a broth and have it with digestive enzymes so only do it with turkey bacon, longhorn, and salmon in small amounts in soups or for flavoring stock for stir frys.  As for Carbs like rice and potatoes I end up getting really gassy and bloated, same with sugars in any amount greater then like the size of my thumb give or take. Oats I only have gluten-free Harvest in about a tbsp amount when tasting recipes of stuff I sell at farmers markets. So I eat mostly fats and protein from egg whites, nuts, seeds, veggies, and vegan protein powders blends balanced for complete proteins. I have at least 1-2 dried fig, dates, handful of banana chips, or a 1/4 of a small fruit with meals for fruits.  My meals are mostly egg white and veggie omelettes, stir frys, and soups, Always with lots of fats and proteins in each meal. I have found having nutritional yeast to help with my mood and energy levels also and find someway of having it in meals often. I keep my foods on rotation and keep getting updated feed back on ratios with my dietician. I also have a rather odd list of foods I can not eat due to allergies/intolerance.
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