What is Celiac Disease?

Wednesday December 16, 2015

Celiac disease, also known as gluten intolerance, is a genetic disorder that affects approximately 1 in 133 Americans. Symptoms of celiac disease can range from the classic features, such as diarrhea, weight loss, and malnutrition, to latent symptoms such as isolated nutrient deficiencies, but with no gastrointestinal symptoms. The disease mostly affects people of European descent, and may occur more rarely in black and Asian populations3. Those affected suffer damage to the villi (shortening and villous flattening) in the small intestines when they eat specific food-grain antigens (toxic amino acid sequences) that are found in wheat, rye, and barley. Oats have traditionally been considered to be toxic to celiacs, but recent scientific studies have shown otherwise. This research is ongoing, however, and it may be too early to draw solid conclusions.

Because of the broad range of symptoms celiac disease presents, it can be difficult to diagnose. The symptoms can range from "mild weakness, bone pain, and aphthous stomatitis to chronic diarrhea, abdominal bloating, and progressive weight loss." If a person with the disorder continues to eat gluten, studies have shown that he or she will increase their chances of gastrointestinal cancer by a factor of 40 to 100 times that of the normal population4. Further, "gastrointestinal carcinoma or lymphoma develops in up to 15 percent of patients with untreated or refractory celiac disease3." It is therefore imperative that the disease is quickly and properly diagnosed so it can be treated as soon as possible.

Testing is fairly simple and involves screening the patient's blood for antigliadin (AGA) and endomysium antibodies (EmA), and/or doing a biopsy on the areas of the intestines mentioned above, which is still the standard for a formal diagnosis.

The only acceptable treatment for celiac disease is strict adherence to a 100% gluten-free diet for life. An adherence to a gluten-free diet can prevent almost all complications caused by the disease. A gluten-free diet means avoiding all products that contain wheat, rye and barley, or any of their derivatives. This is a difficult task as there are many hidden sources of gluten found in the ingredients of many processed foods.

The diseases clearly associated with Cereal grains or "Gluten intolerance" are the bowel disorders bearing the names,"celiac Disease", "Non-Tropical- Sprue", or "Gluten-Enteropathy", and the skin disorder, dermatitis herpetiformis.

The clinical presentations of cereal-grain intolerance, which can be recognized from the history or pattern of illness alone include: Diarrhea, chronic with malabsorption, weight loss, micro-nutrient deficiencies, blood loss and anemia. Abdominal pain may be recurrent and associated with flutulence, distention, and intermittent bowel motility disturbance. Minor gluten-enteropathy may not involve diarrhea, and malabsorption may be inconspicuous or inconsistent. A nutritional anemia may be the presenting problem, although the patient will have an associated history of intermittent abdominal pain and distension. The anemia results from malabsorption  of iron, folic acid and/or vitamin B12.

Arthritic or Fibrositic Syndromes: Aching, stiffness, and fatigue are three common symptoms, which occur together in a variety of disorders, and occasionally remit completely on an elimination diet, which excludes cereal-grains and other allergenic foods.

Brain Disturbances: symptoms include deep, burning sensations in arms and legs, restless legs, numbness and tingling which comes on rapidly with sitting, squatting, and lying in bed; brain effects are manifest by a sense of confusion or "fuzzy-head, disorganization, irritability, and memory impairment. The occurrence of resting pain in joints, particularly the hands with slight swelling, and stiffness is the early prevention of rheumatoid arthritis; it can occur strictly as a manifestation of wheat (and other food) allergy. The activity of rheumatoid arthritis may be reduced in some patients by cereal grain and other allergenic food restriction.

The Gluten Proteins

Gluten is a mixture of individual proteins, classified in two groups, the prolamines and the glutelins. The most troublesome component of Gluten is the Prolamine, Gliadin. It is Gliadin in wheat that causes the major problem in celiac disease, and Gliadin antibodies are most commonly found in the immune complexes, associated with major systemic disease.

We eat the seeds of the grain plants. The seed has a bran casing, a starchy endosperm, which contains 90 % of the protein, and a small germ nucleus, which is the plant embryo, waiting to grow. Any flour made from the starchy endosperm contains prolamines and is potentially toxic to the grain intolerant person.

Celiac disease may serve as a model of wheat allergy. No one should make the mistake of assuming this is the only form of wheat allergy. When wheat is the principle problem food, there is a consensus that barley, oats, and rye must be excluded as well. Millet, is intermediate in the list of offenders; corn and rice are usually tolerated when gluten prolamines are the chief and only food intolerance, although corn is a major food-allergen in its own right. Triticale is a new hybrid grain with the properties of wheat and rye, and is excluded on a gluten-free diet The identity and the amount of the prolamine decides the kind of reaction that is likely to occur. It should be noted that there is considerable variability in the prolamine content of various foods made from cereal grains, and this variability is one of the many reasons why food reactions are not consistent.

The most significant test of gluten intolerance is remission of symptoms when grains are eliminated for a trial period of 3-6 weeks. I have often reviewed the history of patients with chronic diarrhea, and associated abnormalities, who have been "thoroughly investigated" in an academic center and left untreated because their biopsy result was normal. Physicians, who make therapeutic decisions solely on the basis of biopsy results are being dogmatic, not scientific, and certainly not serving the best interests of their patients who simply want to be better. Investigations which do not lead to effective therapy are of no value to patients.

Treatment of Grain Intolerance

Exclusion of wheat, rye, barley, spelt, kamut, triticale, oats, and millet are the initial steps when gluten intolerance is suspected. The exclusion includes all the foods made with the flours of these common grains, including semolina, durham flour and bulgur are all excluded. The bran of these cereals is also excluded. A trial of an elimination diet lasting 3-6 weeks is sufficient to experience significant improvement in most bowel conditions. Longer periods of exclusion are required in conditions with chronic tissue inflammation, especially arthritis, and the skin disorders, eczema, and dermatitis herpetiformis, which sometimes requires an exclusion of several months before the skin condition remits completely.

It is important to realize that multiple food intolerance are common and should be assumed, rather than assuming that single food intolerance's are the problem. Gluten restriction should be part of a more comprehensive dietary study, preferably in the form outlined in the food-testing plan. The best dietary plans are based on what is good to eat, more than what is bad to eat! No one wants to be confronted with long lists of foods they must avoid. It is better to build a diet from scratch, emphasizing the positive. There is an entire universe of foods not related to milk, gluten-cereals, and eggs, the commonest problem foods!

If improvement occurs, gluten restriction is maintained for many months at least before any effort is made to re-challenge with gluten foods. There are two exceptions, millet and oats. Millet is occasionally acceptable, early in an exclusion program although few people find it an attractive food, and it is potentially a trouble-maker.

Oats is probably the best cereal to be re-introduced, and is often tolerated when wheat, rye, millet and barley are not. If gluten restriction is beneficial, oats may be tried after 2-3 months of abstinence. Some people, however, have specific and dramatic allergic reactions to oats, and acceptability must not be assumed. The major substitute for cereal grains is rice. Rice prolamine, orzenin, is different enough from gliadin to avoid immunological cross-reaction.

Rice is the staple food chosen for the core diet because it has low allergenicity, is versatile, widely available, and provides a carbohydrate caloric base to the diet. Rice comes in many varieties some of which are sufficiently different to be treated almost as separate foods.

Converted white rice is preferred at the start of a core-diet program. Brown rice does contain more nutrients, and some prefer it by taste and texture; however, the husk also contains more potential problems. Rice-eating peoples generally polish their rice, removing the husk, because empirically the result is better. Again the nutritional arguments based on the nutrient content of foods outside of the body may be misleading! Brown rice may be well-tolerated, but should be introduced after tolerance for converted white rice is established. There are definite exceptions to this rule, as with all rules, since some patients do report better tolerance of selected varieties of brown rice.

Rice can be utilized in a variety of forms, including rice cereals, rice pablum, puffed rice, rice-cakes, rice noodles, rice vermicelli, and rice flour (starch). Different rices vary sufficiently in taste, and texture to maintain culinary interest. Rice may be boiled with sunflower seeds, buckwheat, wild rice, other seeds, and legumes for added nutritional and culinary variety.

All foods, including rice have the potential to be allergenic, however, and are not exempt from suspicion when adverse food reactions continue on a substitution diet. The most typical symptoms of rice intolerance are heavy fatigue, and chilliness.

Corn is less well tolerated than rice and is implicated in non-immunological bowel disorders. Corn should be introduced cautiously in the third or fourth week of a food re-introduction program, in limited amounts. Corn appears in a multitude of products including snack foods, oils, margarine, cereals, and it is easy to overdose on this food.

Buckwheat is an interesting grain-like food to add to your diet, especially if rice is not acceptable because of an adverse response to it. Buckwheat is not a grain, but belongs to the Polygonaceae family, which includes sorrel, rhubarb and dock. Buckwheat is a seed, however, and resembles the grains in having a starchy endosperm, and can be ground into flour, or cooked as a cereal, or prepared as rice. Buckwheat is not toxic to the celiac bowel, although some people react adversely to it. Buckwheat flour is disappointing for baking since it lacks gluten, the elastic, chewy component of bread.

Quinoa, amaranth and rape (canola) should all be safe for a celiac to consume, although some patients may experience adverse reactions to these grains.

Reasons for a celiac to stick to a gluten-free diet:

By ingesting even minute quantities of gluten, one is taking the risk of having to endure less than perfect health for the next day, week or month depending on one’s reaction to gluten. You simply will not feel as well as you could

A little gluten is too much. Even those celiacs who do not feel ill after ingesting small amounts of gluten are still damaging their small intestine.

Gluten in a celiac’s diet tends to decrease the effectiveness of absoption. Once a celiac, always a celiac and to get maximum benefit from the food you eat, it is imperative to avoid all gluten.

Celiacs who do not follow a strict gluten free diet show a marked increased risk of malignancy.

Ignoring the diet for a prolonged period can do irreparable damage to the small intestine and may result in a relapse, in which some celiacs will never again respond to a gluten free diet, even though it is later followed faithfully. 

Products that may contain, or be cross-contaminated with, gluten:

  • Rice and soy beverages (i.e., Rice Dream), because their production process utilizes barley enzymes.
  • Cross-contamination between food store bins selling raw flours and grains (usually via the scoops).
  • Wheat bread crumbs in butter, jams, toaster, counter, etc. Celiacs may need their own butter dish, toasters, etc.
  • Lotions, creams and cosmetics (primarily for those with dermatitis herpetaformis.
  • Stamps, envelopes or other gummed labels.
  • Toothpaste and mouthwash (major brands in USA, Crest and Colgate, are safe).
  • Medicines: many contain gluten, check with your pharmacist.
  • Cereals: most contain malt flavoring, or some other non-GF ingredient.
  • Some brands of rice paper.
  • Wheat flour may be used to prevent clumping in spices, in particular, ground black pepper.  Can be avoided by purchasing spices whole.
  • Sauce mixes and sauces (soy sauce, fish sauce, catsup, mustard, mayonnaise, etc.).
  • Ice cream.
  • Packet & canned soups.
  • Dried meals and gravy mixes.
  • Laxatives.
  • Grilled restaurant food - gluten contaminated grill.
  • Fried restaurant foods - gluten contaminated grease. If you are ordering French fries in a restaurant make sure the restaurant also doesn’t use the oil for frying battered foods.
  • Always read labels, labels change month-to-month


Support Groups

The Canadian Celiac-Sprue Association: www.csaceliac.org

Canadian Celiac Association: www.celiac.ca

The American Celiac Society


Gluten Free Gourmet, More from the Gluten Free Gourmet, The Gluten Free Gourmet Cooks Fast and Healthy, The Gluten Free Gourmet Bakes Bread, Bette Hagman

Against the Grain, Jax Lowell

Wheat-Free Recipes and Menus, Carol Fenster

Complete Guide to Wheat Free Cooking, Phyllis Potts

All Natural Allergy Cookbook, Jean Marie Martin

Easy Bread Making For Special Diets, N. Dumke

Allergy Free Eating, Liz Reno

Freedom From Allergies Cookbook, R. Greenberg

Breaking the Vicious Cycle, Elaine Gottschall

Dairy-Free Cookbook, Jane Zurkin

The Un-Cheese Cookbook, Joan Stepanik

366 Simply Delicious Dairy Free Recipes, Robin Robertson

Art of Cooking Quinoa, M. Kijac

Gluten-Free Diet: A Comprehensive Resource Guide, Shelley Case