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What is celiac disease? How do I live with it?

David, our 38-year-old son with disabilities (mental disability/ ADHD), had over a year of intestinal problems causing him to be hospitalized four times in the emergency room. After a variety of tests, a gastroenterologist finally diagnosed celiac disease. I felt sorry for David. I wanted to scream, "Doesn't he have enough challenges in life?" But I was so grateful that he didn't have cancer or need surgery that my anger was short-lived. I knew what I had to do--find out about celiac disease and what it means to eat gluten-free.

In my search, I found that many children and adults have this disease. Some have written books about celiac disease and gluten-free diets; some started celiac organizations and support groups; others developed gluten-free recipes; and still others developed gluten-free products that are available in stores and online.

I couldn't believe how lucky we were to find this level of support. With all of this information, it was easier to accept the diagnosis. My work was to develop a 100 percent gluten-free diet for David that included fun things he liked to eat--a diet that he would eat the rest of his life.

What is Celiac Disease? (Also known as Celiac Sprue)

Celiac disease is a hereditary, autoimmune disease that causes a sensitivity to gluten, which is a protein found in wheat, rye, and barley. Oats do not have gluten but are usually contaminated, so they can't be eaten either. The key symptoms of celiac disease are diarrhea, constipation, gas, bloating, backaches, stomachaches, nausea, anemia, fatigue, osteoporosis, stunted growth in children, and weight loss. This disease has no typical pattern. Individuals have varying combinations of symptoms, ranging from mild to severe. Celiac disease can be very insidious, gradually getting worse over time.

David's primary symptoms were backaches, stomachaches, nausea, bloating, and intermittent periods of diarrhea and constipation. And, over time, he became anemic.

Often celiac disease is misdiagnosed as some other intestinal problem, such as irritable bowel syndrome, inflammatory bowel syndrome (IBS), spastic colon, colitis, bowel obstruction, diverticulitis as well as many others conditions. There have been reports of individuals living with celiac for years after a misdiagnosis. Once they were eventually diagnosed with celiac disease and went on the gluten-free diet, they reported feeling good again for the first time in years. Celiac disease is thought to be the most prevalent genetic disorder in the world with about one in 150 people having it, yet many go undiagnosed.

When a person with celiac disease eats gluten, it causes an immune reaction. The lining of the small intestine becomes inflamed and swollen. This damages the villi, or small, hair-like projections in the small intestine, that absorb nutrients from food. These hair-like projections become flattened, shrink, and may even disappear. This causes food to slide through the small intestine as if it is an empty tube. The result is that the villi no longer absorb nutrients or not enough nutrients, which causes the person to become anemic.

Celiac disease can occur at any age. Because celiac is genetic, a person carries the genes for this disease from birth. It is not caused by a single gene but is multi-genetic, which means several different types of genes play a role in developing celiac disease.

Usually there is a trigger that activates the disease, such as surgery, an illness, emotional trauma (i.e. divorce, death), or physical injury. However, some people do not have a trigger, and doctors are unsure why the disease begins. We are not aware of any trigger that occurred in David's life prior to the onset of celiac.

First-degree relatives (mother, father, siblings, children) have a one in 20 chance of having celiac disease. It is recommended that all first-degree relatives receive the blood test to screen for celiac disease.

The following conditions do not cause celiac disease but anyone with them is at higher risk of having celiac and should be tested: autoimmune diseases, Addison's disease, chronic active hepatitis, cystic fibrosis, diabetes, Down syndrome, lupus, multiple sclerosis, myasthenia gravis, neurological conditions, primary biliary cirrhosis (PBC), Raynaud's disease, rheumatoid arthritis, scleroderma, Sjogren's syndrome, and thyroid disease.

If a person with celiac fails to eat gluten-free, associated conditions may also occur such as bone pain, chronic fatigue, fibromyalgia, and headaches.

Diagnosis for Celiac Disease

The first tests that are done to identify celiac disease are blood tests, which are considered screening tests. The anti-tissue Transglutaminase (tTG) test is very specific to celiac disease. Positive findings indicate the person is likely to have celiac disease and not another condition. People with celiac disease have higher than normal levels of antibodies to gluten in their blood. It has been reported that this blood test is effective in identifying cases of celiac in 98 percent of the cases.

When a person tests positive for celiac through blood tests, a biopsy is done to make the diagnosis of celiac disease. A biopsy is taken from the small intestine where the tissue is checked microscopically for damaged villi. This is considered the "gold standard" test for identifying celiac. The disease is not confirmed until both tests have been done.

It is recommended that follow-up antibody screening be done annually to ensure that the diet has been 100 percent gluten-free. We requested follow-up testing to monitor how gluten-free David's diet had been. He lives in a group home and is home with us often, and together we work on making his diet 100 percent gluten-free.

Celiac disease can't be cured, but eating a gluten-free diet can make the symptoms go away and stop the damage occurring in the small intestine. If the person stays on a gluten-free diet, healing begins as soon as the diet begins. The small intestine will repair itself but takes several months to two or three years to heal completely. People with celiac must adhere to a gluten-free diet and never intentionally eat foods with gluten.

Dermatitis Herpetiformis

For some people, celiac disease manifests itself in small, itchy blisters called dermatitis herpetiformis (DH). After a week to 10 days, the blisters stop burning and itching and crust over. Sometimes DH is referred to as the celiac disease of the skin. All people with DH have celiac disease, but all people with celiac do not have DH.

A New Way of Eating--the Gluten-Free Diet

Individuals with celiac disease must have a 100 percent gluten-free diet for life.

A gluten-free diet means you can't eat wheat, rye, barley or oats. This can be a challenge as these flours are in most bread, crackers, baked goods, cereals, and pasta. They are also found as thickening agents in many foods like soups and packaged foods.

Reading labels is of utmost importance to determine if products contain gluten. As of January 1, 2007, the new rules from the Food Allergen Labeling and Consumer Protection Act (FALCPA) went into effect. This act states that "wheat" has to be identified on food labels; however, the new law does not pertain to barley and rye. Identifying wheat has been the biggest problem because often it has been hidden in foods and not listed on labels. With the new rulings, that won't happen, which will allow people to know if wheat is, in fact, contained in the food they purchase. It is advised that individuals with celiac never eat meals or foods if they don't know what's in them. It simply is not worth the risk.

The Gluten-Free Product Listing manual (listed in the Resources box accompanying this article) is a MUST for those trying to live gluten-free. This resource provides a glossary of terms found on labels. It also lists hundreds of products that are gluten-free and stores where products can be purchased. The Celiac Sprue Association updates this listing of products every year.

In a gluten-free diet, a person can eat meat, fish, poultry, plain fruits, vegetables, spices, herbs, beans, nuts, legumes, eggs, milk, butter, real cheese, oils, and many grains. What gets you in trouble are marinates, sauces, breading, and how the food is prepared.

There are many flours that are gluten-free such as rice flour, tapioca flour, and potato starch. These flours can be purchased at large supermarkets and at health food stores. There are also gluten-free cake, cookie, muffin, and bread mixes that have been made with alternative flours. We have tried many, and most are very good. Packaged gluten-free foods are easier and quicker to prepare and sometimes cheaper than buying a number of expensive ingredients to cook from scratch.

However, there are many wonderful recipe books for gluten-free cooking. It just takes time to experiment with recipes and find ones you love. Likewise, it takes time to buy foods and locate ones that become your favorites. The books and Web sites (listed in the Resources box accompanying this article) provide a wealth of information on identifying gluten-free foods, locating products, and cooking/baking gluten-free. The information that is available will make life easier for anyone who needs to eat gluten-free.

We have found eating gluten-free very manageable. Often, I use old favorite recipes and substitute gluten-free flour mix (found in most gluten-free cookbooks) for regular flour. Most of my recipes come out just fine. When David is staying with us, I cook gluten-free for all of us. I bake treats (cookies, cupcakes, etc.) that he takes back to his group home.

I enjoy trying recipes from my new collection of gluten-free cookbooks and have had good luck finding delicious foods that David can eat. Each time, I say a silent prayer of thanks to the wonderful people who have spent so much time developing tasty, gluten-free recipes.

Medications often use wheat as a binder, which helps hold the pills together. It's important to ask your pharmacist to check medications to make sure they are also gluten-free. David's meds were free of gluten so we did not have to make medication changes.

Preparing to Eat Gluten-Free

When David began the gluten-free diet, I explained to him, "We are going to try lots of new foods and recipes. Some will be good and some may not. If you don't like something or if a recipe is gross, you never have to eat it again. We will find tasty foods that you like!!" Over time, we have thrown out entire recipes as well as food that we purchased. However, in the process, we discovered many foods that taste good and that David likes-even homemade gluten-free pizza!

David has a mental disability, but he understands that eating foods with gluten is what made him sick. He doesn't want to get sick again. We have been very lucky because David will usually ask if he is not sure he should eat something. That is not to say we haven't had times that he went ahead and ate something with gluten. But it has been infrequent.

At a wedding reception this summer, David could eat most of the dinner meal, so there wasn't a problem. However, he could not have any wedding cake. What a disappointment for him! We made a deal with David that on the way home we would stop for his favorite Dairy Queen treat in place of eating any cake. Later, I heard him tell the waitress that he didn't want any cake!

If you or a family member have unexplained symptoms like those listed in this article, be checked for celiac disease. If your physician is unfamiliar with celiac, provide a copy of this article. For more complete information, go to any of the Web sites or resources that are provided with this article. We are no longer upset that David has to eat gluten-free. Instead, we rejoice that a special diet has relieved him of his symptoms and made him well again and that we can still go on vacations, eat at restaurants, and enjoy birthday cake together!
Gluten-free Peanut Butter Cookies

1 c. nutty peanut butter

1 c. sugar

1 egg

Mix--drop by teaspoonfuls

Optional--decorate with tiny
M&Ms or mini chocolate chips

Bake 350 degrees for 10 to 12
minutes


ORGANIZATIONS

The Web sites of these organizations provide helpful information on celiac disease and on living gluten-free. Additional information is available with a membership.

Canadian Celiac Association

5170 Dixie Road, Suite 204, Mississauga, ON L4W 1E3

Toll Free: 800-363-7296; Email: celiac@look.ca

www.celiac.ca

Celiac Disease Foundation

13251 Ventura Blvd. #1, Studio City, CA 91604-1838

Tele: 818-990-2354; Email: cdf@celiac.org

www.celiac.org

Celiac Sprue Association/

United States of America, Inc. (CSA)

PO Box 31700, Omaha, NE 68131-0700

Toll Free: 1-877-CSA-4CSA

Email: Celiacs@csaceliacs.org www.csaceliacs.org

Members receive Lifeline, a quarterly magazine. Annually publishes the

Gluten-Free Product Listing.

Gluten Intolerance Group

15110-10th Ave. SW, Suite A, Seattle, WA 98166

www.gluten.net; Telephone: 206-246-6652

MAGAZINES, NEWSLETTERS, & CELIAC ASSOCIATIONS

Living Without--a magazine published quarterly that includes people living with gluten free diets.

Gluten-free Living--a magazine published quarterly.

Celiac Sprue Association/USA, Newsletter--Lifeline, published quarterly

Canadian Celiac Association

Celiac Sprue Association/USA

RESOURCES

Celiac Disease and Gluten Free Living

Blumenfield, S. Susan's Story: A Mother's Struggle to Find the True Cause of Her Daughter's Illness. Healthlink--The University of Chicago Hospitals.

Celiac Sprue Association, (2006). The CSA Gluten-Free Product Listing (10th ed). Omaha, NE: Celiac Sprue Association/USA, Inc.

Dennis, M., & Case, S. (2004). Going Gluten-Free: A Primer for Clinicians. Practical Gastroenterology, Nutrition Issues in Gastroenterology, Series #16.

Goulart, Y.M., & Randall, C. (1997). CSA Recipe Collection. Omaha, NE: Celiac Sprue Association/USA, Inc.

Guandalini, S. & Melin-Rogovin, M. (2002). Celiac Disease: Myths and Facts. Gastroenterology, University of Chicago Medical Center.

Hagman, Bette. (2000). Living Well, Without Wheat: The Gluten-Free Gourmet (2nd ed). New York: Henry Holt.

King, John, (Ed.). (2004). Mayo Clinic on Digestive Health, (2nd ed.). Rochester MN: Mayo Clinic.

Korn, Danna (2001). Kids with Celiac Disease: A Family Guide to Happy, Healthy, Gluten-Free Children. Bethesda, MD: Woodbine House.

Korn, Danna. (2002). The Art of Happy, Healthy Gluten-Free Living. California: Hay House, Inc.

Sanderson, S.L. (2002). Gluten-Free Food for Kids. Bethesda, MD: Woodbine House.

Sarros, Connie. (2004). Wheat-Free, Gluten-Free: Cookbook for Kids and Busy Adults. New York: Contemporary Books.

Do not go on a gluten-free diet before being tested for celiac as this will change the outcome of the test. The results may be negative when in fact the person has celiac disease.

Joan Blaska, Ph.D. is professor emeritus at St. Cloud State University in Minnesota. She is currently an education consultant and author of the second edition of her book: Using Children's Literature to Learn About Disabilities and Illness. She and her husband are legal guardians of David, their son with disabilities and celiac disease. Dr. Blaska can be reached at jkblaska@stcloudstate.edu.
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Title Annotation:GENETIC DISORDERS
Author:Blaska, Joan
Publication:The Exceptional Parent
Geographic Code:1USA
Date:Aug 1, 2007
Words:2447
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