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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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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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    • Good advice Ennis!  I would add baking and freezing some gluten-free cupcakes to have on hand, so that she is never left out.  Be sure to read our Newbie 101 tips under the coping section of the forum.  Cross contamination is a big issue,  If the house is not gluten free, make sure everyone is in board with kitchen procedures.   Hopefully, your GI talked about the fact that this AI issue is genetic.   Get tested (and your TD1 child).  TD1 is strongly linked to celiac disease.  About 10% of TD1's develop celiac disease and vice versa.  Get tested even if you do not display any symptoms.    http://www.cureceliacdisease.org/screening/ https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/
    • What does weak mean?  Like you squat down and and you can not get back up?  Or are you fatigued?  When you said blood panel, was your thyroid tested?  Antibodies for thyroid should be checked if you have celiac.  So many of us have thyroid issues.  
    • We are not doctors, but based on the results you provided, you tested negative on the celiac screening test.  You could ask for the entire celiac blood panel to help rule out celiac disease.  The other IgA that was high?  It normally is given as a control test for the TTG IgA test (meaning if the celiac test results are valid).  In your case, the TTG IgA test works.  Outside of celiac disease, you might have some infection.  Discuss this with your doctor as he has access to your entire medical file.  I would not worry about it though over the weekend!  
    • See: http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/ Take a copy of that with you or mail it to the doc. How many endoscopic biopsies did they take? Those with dh tend to have patchier damage than "normal" celiacs.
    • Ironictruth, I think that is a very insightful thought. since different antibodies present for different body systems all the ways gluten affects the body is still not well understood. Here is a case of presumably someone who had the gut damage of a celiac but also had neurological damage. http://www.nature.com/nrneurol/journal/v3/n10/full/ncpneuro0631.html entitled "A case of celiac disease mimicking amyotrophic lateral sclerosis" so it has happened in the literal but since this is not well understood people don't make the connection today. I would also point you to this hindawi article on the "Lesson's learned from Pellagra" but I am afraid we haven' learn't yet. https://www.hindawi.com/journals/cggr/2012/302875/ notice specially the 2.1 section clinical feature of pellagra and all the neurological symptom's once associated with a Pellagra patient. quoting "The neurological manifestation did not stop there because other degenerative conditions, such as an amyotrophic lateral sclerosis-like picture, were described, with fasciculation of the tongue and upper and lower motor neuron signs. Cerebellar syndromes occurred and vertigo was frequent. Headaches, sensory and pain syndromes, epilepsy, and involuntary movements were noted as well as sleep disturbances. Cord lesions were also seen, as was optic atrophy, so there were multiple sclerosis (MS), like variants." which tells me doctor's don't recognize pellagra today when they see it because they haven't seen it in 75+ years. ***this is not medical advice but read the hindawi journal on lesson's learned and I think you will see yourself in their many descriptions of all the way Pellagra presents itself to doctor's and patients still suffering today and you can see why it (like celiac) is hard to pin down today because it presents in so many ways it can be soo overwhelming and since vitamins are not a focus anymore today (especially b-vitamins) that today I believe we are doomed to repeat history's lessons unless the current generation learns again all the ways pellagra presents itself today. good luck on your continued journey. posterboy by the grace of God,  
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