Treatment of Celiac Disease and Gluten-Related Disorders Gluten-Free Lifestyle
How is Celiac Disease Treated?
1. Confirmed diagnosis.
2. Treatment begins. Treatment is a prescription - lifelong elimination of "gluten".
You are going to be healthier.
No surgery is required. No medication is required.
The only known treatment for celiac disease to date is a gluten-free diet.
Begins with a commitment to wellness through a gluten-free diet and lifestyle. Join the Celiac Support Association.
What is Gluten?
The term "gluten" is a generic term for the storage proteins found in many grains. In reality, each grain storage protein has its own name. Gliadin and glutenin are found in wheat, hordein in barley, secalin in rye, avenin in oats, zein in corn and oryzenin in rice.
Storage proteins are not all the same. The "gluten" in wheat, barley, rye, contain particular amino acid sequences harmful to persons with celiac disease. Gluten in oats* , corn and rice are less likely to cause harm to those with celiac disease. (Note: In order to avoid confusion, the term "gluten" used in this web site refers to gluten found in WBR their crosses and derivatives and not oats, corn and rice.)
* Inconclusive information exists concerning the inclusion of oats in the gluten-free diet. Some clinical studies indicate that uncontaminated oats may be tolerated by some people with celiac disease. Other studies indicate that some people with celiac disease have an immune response to oats (avenin). Currently, there is no way to identify which people with celiac disease may tolerate oats. Therefore caution is advised when considering the use of uncontaminated oats in a gluten-free diet. Current recommendations delay addition of oats for about a year after diagnosis.
Arentz-Hansen et al., The molecular basis for oat intolerance in patients with celiac disease, PLoS Med, Oct 1(1):el, Epub, Oct 19, 2004.
Lundin et al., Oats induced villous atrophy in celiac disease, Gut, Nov; 52(11):1649-52, 2004.
Silano et al., In vitro tests indicate that certain varieties of oats may be harmful to patients with celiac disease, Journal of Gastroenterology and Hepatology, 22:528-531, 2007.
Where is Gluten Found?
Breads, pastas, cookies are obvious grain products. Gluten is also "hidden" in many processed foods such as coating of frozen French fried potatoes, soy sauce and rice cereal as malt. Even many non-food items like cosmetics, and household cleansers may contain gluten. Any product that is made with WBRO or any of their derivatives will contain varying amounts of gluten. Refer to the grains and flours glossary for a list of gluten-free and gluten-containing grains. The medically required gluten-free diet also recommends the elimination of gluten cross contamination or contact with gluten-containing items. Traces of wheat/barley/rye will affect all persons with celiac disease. The US Grain Standards cover commodity grains. A percentage of "other" from cross-contamination is present even when a grain is labeled "pure." Storage and preparation areas in the home present cross-contamination risks.
Since the term "gluten" is rarely used on ingredient labels, it is imperative that a person on a gluten-free diet identify the typical places gluten hides. (See, also, The CSA Gluten-Free Product Listing for more information and a listing of commercial products that are gluten-free.) Habitual ingredient label reading builds the confidence leading to informed choices.
Meaningful, Verifiable and Consistent
For over 30 years, Celiac Support Association members have worked to require product labeling that is Meaningful, Verifiable and Consistent. The work continues today, CSA representatives work with both the government and the manufacturing industry - for Source of ingredient labeling. It provides essential information for people with celiac disease to be healthy. Detailed labels provide information to make accurate decisions. Learn more about gluten-free labeling.
Getting Started on the Gluten-Free Diet
A well planned gluten-free diet promotes good health. Gluten, as a protein fraction, is not essential for human health and its amino acid components are replaced many times over in other foods. For a person with celiac disease, living gluten-free can only result in improved health and well being!
A lifestyle change takes patience and understanding. The support of loved ones and friends is an important part of treatment. The positive attitudes and growing understanding of those around each of us makes the dietary transition easier.
Experienced gluten-free people and advocates included physicians, dietitians, home economists, and Celiac Support Association members have much to share.
A huge variety of foods available in every market. Most "regular" recipes can be converted to gluten-free - even Aunt Lydia 's spaghetti and meatballs or Grandma's Thanksgiving pumpkin pies.
For more information on the gluten-free diet see:
- Basic Diet Choices
- Grains and Flours Glossary
- Local Support to find someone near you who can help.
Contact Celiac Support Association for more information on or to order one or more of the gluten-free cookbooks available at a minimal cost.
The CSA Gluten-Free Product Listing is also a valuable 400 plus page resource to transition to shopping "gluten-free."
Establishing a Support System
All celiacs have an autoimmune reaction to the storage proteins in wheat, barley and rye (crosses and derivatives). Many celiacs also react to oats. Yet; each person is very different in dozens of ways which only the individual and his/her medical advisor(s) will know. Changing long established habits - for the rest of your life - can seem like a daunting task. It need not be faced alone. Membership in CSA provides information, encouragement, and support. Others share your journey. CSA members are ready to help the transition go more smoothly. Refer to the Local Support page to find a chapter or resource unit in your area. Working with a knowledgable dietitian or nutrition professional will also aid in learning to shop, cook and eat gluten-free. There is no "typical celiac." Not only do the symptoms vary widely, so do the related medical conditions. Diet and treatment needs are unique to each individual. What may work for one may be totally inappropriate and/or damaging for another. Therefore, establish a working relationship with a physician who is willing to become increasingly knowledgeable about celiac disease. Partnering with a doctor will help an individual make the most appropriate decisions regarding any on going deficiencies and supplementation.
Supplementing the Gluten-Free Diet
Active celiac disease prevents the body from absorbing nutrients properly. There are no longer as many functioning "holes in the sieve" for nutrients to get through to the blood stream. Even after the villi in the small intestine are described as being "back to normal," there remains the potential of some nutrients being absorbed at lower levels. Because of this, the monitoring physician may recommend a blood test analysis to learn if selected vitamins or nutrients are being absorbed at adequate levels. Supplements are not always required.
This recommendation may include selected intake of iron and folate and, in a few cases, one of the B vitamins. Occasionally there is a need for replacement of fluids and electrolytes, including calcium, potassium and magnesium. Both men and women with low bone density may require vitamin D replacement. If there are associated conditions, such as lactose intolerance or diabetes, a series of additional treatment elements may apply.
The immune system of a person with celiac disease is svery sensitive. Stamina and resilience may not be at the level they once were. Most vitamins, food supplements and over-the-counter medications are based on and measured for persons at full-functioning, full-absorbing levels. Again, working with a monitoring physician who will determine the appropriate supplemental product and strength. If symptoms persist after adopting a gluten-free diet, further refinement may be necessary.
Additional Sensitivities May Be Present
Even after the gluten-free diet is well established, some symptoms may persist. Consult with the monitoring physician since additional food sensitivities or health considerations may be involved.
When gluten is removed from the diet, most of the damage that was done to the small intestine (the jejunum) is repaired. It takes only three to six days for the intestinal lining (the mucosa) to show improvement. Within three to six months, most symptoms subside as the mucosa returns to its normal (or nearly normal) state.
If, after six months on the GF diet, symptoms still persist, the following need to be considered:
- Has gluten been removed from every area of your diet and life? Reevaluate and refine as necessary. (See How is Celiac Disease Treated? for information on where gluten can "hide" in food and other products.)
- Do unrelated conditions exist that are causing the continued discomfort? (See How is Celiac Disease Treated? for information on additional conditions that may be present.)
Lactose Intolerance One generally transient condition that is common in those with celiac disease is lactose intolerance. Lactase is produced in the tips of the villi. If lactase is not present to facilitate digestion of the milk sugar, lactose, the body reacts with symptoms such as bloating, gas and/or diarrhea. A simple test for lactose intolerance can be administered during a routine physician visit. Other carbohydrate intolerances may be present for a while after diagnosis.
Molds Also common for newly diagnosed patients is sensitivity to food and air-borne molds. This is likely to include such common foods as mold-based cheeses, mushrooms, yeast and yeast products. Xanthan, which may be used as a binder in some gluten-free breads is from corn.
Food Allergies A lesser number of celiacs report that one or more food allergies also affect them. Approximately 90% of food-based allergies in the U.S. are linked to eight major categories: milk, soy, eggs, fish, Crustacean shellfish, tree nuts, peanuts and wheat. It is important to note that one can have an allergy to wheat and not have celiac disease.
For each of these conditions, appropriate dietary changes and related adjustments will need to be made with the help of the monitoring physician. However, for the majority of celiac patients, the gluten-free diet is the entire treatment. If symptoms continue to persist after adopting a GF diet and checking for additional sensitivities, further refinement may be necessary.
For the patient who may have had active, untreated celiac disease for a number of months or even years, there may be associated immune-related conditions. There is an established association between celiac disease and insulin-dependent diabetes mellitus and with thyroid disease. Not so common, but occasionally found in patients with celiac disease are hyposplenism, splenic atrophy and selected neurological disorders. It must be emphasized, however, that none of these conditions is specific for celiac disease.
The conditions of osteoporosis and osteopenia (a loss of bone mineral density) are serious complications for persons with celiac disease. Most authors report the incidence to be about ten times higher among celiac patients than is found in the general population. It is likely that about 4 out of 10 celiac patients will need aggressive treatment for low bone mineral density-related problems. While it can be a problem for both men and women, it affects post-menopausal women at a higher level. Diagnosis of this complication can now be made using bone densitometry. Treatment typically includes calcium supplement intake along with estrogen replacement. Any pattern of treatment must be based on individual evaluation and physician recommendation.
A link has also been discovered between untreated celiac disease and enteropathy-associated T-cell lymphoma. This is true also for patients with dermatitis herpetiformis. Studies have shown, however, that the risk of contracting this condition is reduced when the gluten-free diet is strictly maintained. It has also been found that bowel adenocarcinoma may develop when celiac disease is untreated for a long period of time.
Maximizing One's Health
Be proactive! In order to allow for accurate and timely assessments, the monitoring physician needs to know when health screenings and evaluations are made in the following areas:
- up-to-date flu shots and pneumovax 23, the vaccine for pneumonia
- bone mineral density
- GI malignancies, colon cancer and hemo cell
- Iga levels in patients with recurring infections
- glandular function (thyroid)
When might there be an FDA approved supplemental therapeutic treatment or related prescription drug available in the future for those with celiac disease or gluten-related disorders?
Learn more about the process at the FDA for new therapeutic treatments and drugs:
- Explanation of FDA drug review process
- Visual of FDA Drug Approval process
Living life on the gluten-free diet may seem like quite an adventure, but the health and well being that will be experienced will far out-weigh any inconvenience it may cause. Working closely with a knowledgeable physician and practicing wise self-management skills will help a person with celiac disease live life to the fullest!
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