NCA HOUSTON CELIAC SUPPORT GROUP



WHAT IS CELIAC DISEASE?

Celiac Disease (CD) {also called non-tropical sprue, celiac sprue, gluten sensitive enteropathy, non-celiac sensitivity or autoimmune malabsorption syndrome} is a chronic digestive disorder affecting genetically susceptible individuals igluten intolerancen which the surface of the small intestine is damaged by eating gluten-containing grains such as wheat, barley, rye and oats. Oats are generally contaminated with wheat. Triticale, spelt, kamut, and malt (barley) contain gluten as well.

There are over 200 symptoms of CD and they vary so widely that there is no such thing as a typical case. The symptoms of celiac disease are as varied as the nutritional deficiencies caused by the lack of absorption. However, the most common symptoms are chronic diarrhea, or constipation, pale and bulky stools, abdominal cramping, intestinal gas, distention and bloating, anemia, fatigue, weakness, lack of energy, weight loss, depression, and irritability. Now the most typical symptoms tend to be outside the digestive tract, (e.g., brain fog, constipation, dental abnormalities, electrolyte imbalance, elevated liver enzymes, headaches, focus problems, ataxia, infertility/miscarriages, pain in bones and/or joints, Osteopenia/osteoporosis; and the skin presentation Dermatitis Herpetiformis).

Prevalence of CD in the U.S. is now thought to be at least 1 in 133, or higher, from a 3-year study by the Center for Celiac Disease. The percentage is 1% world wide.

A related skin condition known as dermatitis herpetiformis (DH) can also occur. DH causes intense itchy, blistering outbreaks usually on the elbows, knees and feet. CD and DH are so closely linked that 80% of DH patients have the same bowel sensitivity to gluten as CD patients.

DIAGNOSIS

The most definitive test to confirm CD is a small bowel biopsy. The biopsy involves the insertion of a small, flexible tube down the throat and on to the small intestine to retrieve tissue samples. Although this procedure won't make most people's list of favorite things to do, it is relatively quick and painless.

There is a special panel of 4 or 5 antibody tests that may be done as screening tests before the endoscope procedure. One must be eating gluten for all of these tests to be as accurate as possible.

TREATMENT

Unfortunately, there are no pills, shots or operations to cure celiac disease. The only known treatment is complete, lifelong avoidance of all products containing gluten. After beginning the gluten-free diet, you should notice improvement within a few days to a few weeks, depending on the degree of sensitivity and the severity of the damage, but healing might not take place for up to a year.

THE GLUTEN-FREE DIET

The gluten-free (GF) diet is not as simple as it may seem. You will be surprised to learn that gluten is hidden in many food products, like soups, salad dressings, medicines, vitamins, vinegars and ice cream. It can even be in the glue on stamps and envelopes.

Further complicating matters is the fact that food labeling laws are not precise enough, although they are much better. Prescription medications as well as over-the-counter medications generally do not test for or label for wheat or gluten. Many CD patients have other food allergies, such as to dairy, soy or MSG.

So it's more than a matter of simply not eating bread, pasta, regular oatmeal and breaded fried foods. But it may be as easy as choosing a different brand. Read all food labels every time! Cross contamination is a problem at home and when you go out to eat. Beware of toasters, food preparation surfaces, pasta cooking water, and spreads, shared utensils, colander/strainers, fryolater and deep fryers.

SO ... WHAT CAN I EAT?

Cheer up! You don't have to live on bananas and boiled rice. You can eat any food that doesn't contain wheat, barley, rye or regular oats in any form. Acceptable foods include fresh meats, fish, salads (be careful of salad dressings), vegetables and fruit.

GOOD NEWS!

The good news is that you don't have a disease requiring hospitalization, constant medication or long-term suffering -- at least not if you follow a strict gluten-free diet.

If you change your eating habits, you can eliminate the symptoms of CD and live a normal life. Constant scrutiny and control of food intake is the only defense a person with celiac disease and/or DH has against gliadin-induced illness. Thousands of others around the world have done it and so can you.

It may not be easy. You won't be able to go to your favorite burger place any more, or to that wonderful pizza parlor you love so much. But it will be a small price to pay for good health. As soon as you eliminate all sources of gluten from your diet, your overall health will improve. The NCA Houston Celiac Support Group has investigated many restaurant for you (over 100 pages).

With appropriate substitutions, the diet can be quite acceptable. Combinations of rice, corn, soy, potato starch, bean and tapioca flours are used to make gourmet breads, cakes, cookies, pastas and pizzas.

Your doctor and dietitian don't have to live with these dietary restrictions every day and can't keep up with the multitude of product changes. From here on, YOU are responsible for your own healing.

It is important to fully educate yourself about CD. You will become an expert in what is allowable and what is not. If you are not sure about a food item, you may contact the manufacturer and your local support group.

It may take you a while to get used to your new lifestyle. And because you will not be eating the same as everybody else, you may be perceived as "different". By preparing your own meals, "brown bagging" at work, and calling ahead when you go to restaurants, you can be a part of the group and fit in just like everybody else. It will just take a little more work than before.

We are lucky that there are many GF specialty food vendors who produce good GF flour mixes and food products for those who cannot eat wheat/gluten. Therefore, you can easily add more variety into your GF diet. We suggest you start with GF mixes (e.g., GF brownie mixes, cookie mixes, GF bars, etc.) rather than buy a lot of different flours. More information is available from your support group, NCA, and the many good GF cookbooks.

Support groups play the important role of helping identify what foods are free from gluten, how to adjust recipes, and give updates on where to locate foods that are free from the offending grains. These resource groups provide continuing education on CD, encouragement, and practical help in coping with this often frustrating condition in order to contribute to your continued health and well-being.

THE CHALLENGE OF CD

Grains are so prevalent in our modern culture that it is difficult to get away from them. Wheat, at least, seems to be everywhere. You will be surprised to learn just how many places grains can turn up. They sneak their way into foods that on the surface seem completely harmless for celiacs. You have to read labels, check menus, call restaurants, question cooks and do anything it takes to be doubly sure you are not eating any offending grain products.

HELP IS HERE

You may think you are the only person in the world with this unusual condition. However, there are actually thousands of people in the U.S. with celiac disease. These fellow celiacs are members of support groups all across the country and those sponsored by the National Celiac Association. The support groups meet regularly to discuss issues related to celiac disease and dermatitis herpetiformis.

NCA publishes the GLUTEN-FREE NATION magazine for subscribers. Remember that product ingredients and sources may change at any time. Continue to be vigilant and use common sense.

NCA e-mails to subscribers a monthly e-newsletter including “ASK THE DIETITIAN Q&A COLUMN".

NCA holds an annual national conference in partnership with the Harvard Medical School Celiac Research Program. NCA is proud of its longstanding partnership with the following Celiac Centers:

• MASSACHUSETTS GENERAL HOSPITAL

• BETH ISRAEL DEACONESS MEDICAL CENTER

• BOSTON CHILDREN’S HOSPITAL

• THE HARVARD MEDIAL SCHOOL CELIAC RESEARCH PROGRAM

• UNIVERSITY OF CHICAGO CELIAC CENTER

DISCLAIMER

The information, including opinions and recommendations, contained in this website is for educational purposes only. Such information is not intended to be a substitute for professional medical advice, diagnosis or treatment. No one should act upon any information provided in this website without first seeking medical advice from a qualified medical physician. Food manufacturer's products are subject to formula change at any time, changes that may or may not be reflected on labels. No liability is assumed by the NCA Houston Celiac Support Group or any of its members.

NATIONAL CELIAC ASSOCIATION 20 Pickering Street Needham, MA 02492 1-888-4-CELIAC (1-888-423-5422) Website: http://www.nationalceliac.org/ E-mail: info@nationalceliac.org CELIACS HELPING CELIACS



Updated 6August2019