How is Celiac Disease Treated?
Once the diagnosis of Celiac Disease (CD) has been confirmed, treatment can begin immediately. Celiac treatment does not require surgery or an unending dependence on medication, nor does require repeat visits to the doctor’s office.
Although a few medications are currently being tested to treat the symptoms of Celiac Disease, currently the best and only known treatment for Celiac Disease is simply a lifelong elimination of “gluten” from your diet (gluten free diet).
Living Life Gluten Free
Before adopting a gluten free lifestyle, it is important to first understand what gluten is and all of the places where it can be found.
What is Gluten?
The term “gluten” is, in a sense, a generic term for the storage proteins that are found in grains. In reality, each type of protein – gliadin in wheat, hordein in barley, secalin in rye, avenin in oats, zein in corn and oryzenin in rice – is slightly different from the others. The “gluten” in wheat, barley, rye, and a much lower amount in oats* (WBRO), contain particular amino acid sequences that are harmful to persons with a gluten intolerance or celiac disease.
It is important to note that the gluten found in corn and rice does not cause harm to those with Celiac Disease.
Note: 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.
Where is Gluten Found?
While one would expect to find gluten in places like breads, pastas, cookies and other obvious grain products, gluten is also “hidden” in many processed foods such as frozen fried potatoes, soy sauce and even in rice cereals. Even many non-food items like cosmetics, and household cleansers contain gluten.
In addition to avoiding gluten in foods and non-food products, a strict gluten free diet also requires you to avoid foods that have been cross contaminated or come into contact with gluten-containing items.
Learning to Read Labels
Since the term “gluten” is rarely used on product labels, it is imperative that a person on a gluten free diet learn the typical places that gluten can hide. Label reading must become a habit in order for the gluten free consumer to have the confidence to make informed choices.
Many gluten free products these days are labeled gluten free to help the consumer easily indentify their products. However, there are still a large number of products which aren’t clearly labeled as gluten free. To date, many Celiac Disease and food allergy organizations have been working with the Food and Drug Administration (FDA) to improve the labeling of these products. Things have drastically improved over the past few years, but there is still a lot of room for improvement.
Getting Started on the Gluten Free Diet
The move to gluten free living brings a number of important changes to life. The return to health and well-being is the greatest among them. The disease can be “controlled” simply by a change in one’s diet – no risky surgeries, no life-long dependence on expensive medication. And, best of all, the gluten free diet is a risk-free diet! Gluten, as a protein, is not essential to the diet and its amino acid components are replaced many times over by other foods. For a person with Celiac Disease, living gluten free can only result in improved health and well-being!
It is important when adopting a life-style change to be patient and understanding, both with one’s self and with others. Educating loved ones and friends is an important part of treatment. The positive attitudes and understanding of the people closest to the patient make the dietary transition easier.
Gathering information from physicians, dietitians, home economists, and celiac organizations is essential. The internet is a wonderful place as well, so use it! Some resources we recommend include:
- Celiac Disease – Recommended resource for Celiac Disease news and resources.
- Gluten Free Recipes – Find gluten free recipes that will allow you to make a gluten free version of your favorite foods!
- Gluten Free Restaurants – Website that includes information about different restaurants and their gluten free menus.
Establishing a Support System
Changing lifelong habits – for the rest of your life – can seem like a daunting task in the beginning; however, it need not be faced alone. Membership in a Celiac organization can provide information, encouragement, and support that will help the transition go more smoothly. You’ll also want to seek out and join a local Celiac support group in your area. Working with a dietitian or nutrition professional will also aid in learning to shop, cook and eat gluten free.
It is important to remember that there is no such thing as a “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. All celiacs are alike in that they have an immune reaction to the storage protein in W-BRO, yet; each is very different in dozens of ways which only the individual and his/her medical advisor(s) will know.
Therefore, it is absolutely VITAL that a relationship is established with a gastroenterologist or other physician who is knowledgeable in the diagnosis and care of Celiac Disease. Partnering with a doctor will help an individual make the most appropriate decisions regarding the gluten free diet and any supplementation that may be necessary.
Supplementing the Gluten Free Diet
Celiac disease prevents the body from absorbing nutrients properly. As a result, 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.
Once a determination is made, supplementation of the gluten free diet may be advised. This recommendation may include selected intake of iron and folate and, in a few cases, one of the B vitamins. Occasionally there is 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.
It is important to remember that the immune system of a person with celiac disease is weak. The auto-immune system functions at a lower-than-normal level. Infections may not be handled as well as in other people. 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. A person with Celiac Disease may need less or perhaps more of a particular vitamin, mineral or medication. Again, working with a monitoring physician will help determine what and how much is the appropriate allowance of a particular medical or supplemental product.
If symptoms persist after adopting a gluten free diet, consult your doctor, as further refinement may be necessary.
Additional Sensitivities May Be Present
Even after the gluten free diet is well established, one or more of the original symptoms may persist. If this occurs, it is important to again consult the monitoring physician as there may be additional food sensitivities or other health considerations involved. It can be something as simple as removing an additional food or a few foods from your diet.
One generally transient condition that is common in those with Celiac Disease is lactose intolerance. 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.
Also common for newly diagnosed Celiac Disease 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 and xanthan, which may be used as a binder in some gluten free breads.
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 gluten free 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)
One of the best ways to thrive on a gluten free diet is to find others following the diet. Celiac support groups are wonderful and there are a variety of celiac organizations and celiac centers out there which provide information, resources, and other types of support.
- American Celiac Disease Alliance (ACDA)
- Celiac Disease Foundation (CDF)
- Celiac Sprue Association(CSA)
- Gluten Intolerance Group of North America (GIG)
- National Foundation For Celiac Awareness (NFCA)
- Canadian Celiac Association (CCA)
- Ottawa Chapter
- Toronto Celiac
- Association of European Coeliac Societies (AOECS)
- Celiac Youth Of Europe (CYE)
- Slovenia Celiac Society
- Wm. K. Warren Medical Research Center For Celiac Disease, San Diego
- Stanford Celiac Sprue Clinic
- The University of Chicago Celiac Disease Center
- Rush University Adult Celiac Disease Program
- University of Maryland Center For Celiac Research
- Celiac Disease Center at Columbia University
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!