Celiac disease can also occur in asymptomatic individuals who have associated conditions. Recent studies show the prevalence of celiac in children under 15 years in the general population is 3 to 13 per 1,000 children, or approximately 1:300 to 1:80 children. A figure of 1 in 133 people is commonly used as an average for rates of celiac disease in the general population.

Diagnosis of Celiac Disease

Celiac disease can be challenging to diagnose, because its symptoms are often similar to those of other diseases. Celiac disease is easily taken for other diseases such as Crohns disease, chronic fatigue syndrome, diverticulitis, various intestinal infections, irritable bowel syndrome, iron-deficiency anemia caused by menstrual blood loss. Thus, celiac disease is often misdiagnosed, and generally under-diagnosed.

Celiac practice guidelines call for routine screening of anyone with a family history of celiac disease or of disorders such as thyroid disease, anemia of unknown cause, type I diabetes or other immune disorders or Downs syndrome. Otherwise, patients are generally screened case by case according to individual symptoms.

Likely Signs of Celiac Disease

As a general practice, celiac disease should be considered in the earliest stages of differential diagnosis of children with persistent diarrhea, especially with failure to thrive.

Celiac disease should also be considered in the differential diagnosis of children with persistent GI symptoms, including recurrent abdominal pain, constipation and vomiting, and any other GI issues commonly associated with celiac disease.

Testing is recommended for children with celiac-associated non-gastrointestinal symptoms, such as delayed puberty, dental enamel hypoplasia of permanent teeth, dermatitis herpetiformis, iron-deficient anemia resistant to oral iron, osteoporosis, and short stature.

Testing is also recommended for asymptomatic children whose relatives have celiac, and those who have celiac-associated conditions, such as autoimmune thyroiditis, Down syndrome, selective IgA deficiency, Turner syndrome, type 1 diabetes mellitus, or Williams syndrome.

Celiac practice guidelines call for testing asymptomatic children who belong to at-risk groups at around three years of age, as long as they have eaten gluten regularly for at least one year before testing.

Therefore, guidelines call for testing asymptomatic individuals with negative serological tests, and who belong to at-risk groups at regular intervals. Treatment guidelines do not presently call for routinely testing autistic children for celiac disease, as there is currently no peer reviewed scientific evidence that celiac disease is more common in autistic children than in the general population (although more research needs to be done in this area because many parents report a vast improvement in their childrens symptoms by eliminating gluten and casein from their diets).

Testing for Celiac Disease

A blood test, such as anti-tissue transglutaminase and anti-endomysial antibodies, can detect abnormally high antibody levels, and is often used to screen people who are most likely to have the disease, and for those who may need further testing.

Based on the current evidence and practical considerations, including accuracy, reliability, and cost, measurement of IgA antibody to human recombinant tissue transglutaminase (TTG) is recommended for initial testing for celiac disease. Although it is nearly as accurate as TTG, measurement of IgA antibody to endomysium (EMA) is observer dependent and therefore more subject to interpretation error and added cost. Because of the inferior accuracy of the antigliadin antibody tests (AGA), the use of AGA IgA and AGA IgG tests is no longer recommended for detecting celiac disease.

More than 90% of patients with celiac disease have genetic markers HLA DQalpha *0501, and HLA DQbeta *0201. Negative tests for these markers in conjunction with negative serum antibody tests suggest an absence of celiac disease. However, positive tests for the genetic markers do not necessarily mean that the patient has celiac disease. In conclusion, genetic markers can generally be used as a test to exclude celiac disease as a diagnosis, although there have been reported cases of the disease absent these markers--it is a scenario that is rare.

Celiac Disease Biopsy

To confirm a diagnosis of celiac disease, your doctor may need to do a biopsy, that is, microscopically examine a small portion of intestinal tissue, looking for celiac associated damage to the small intestine. To do this, your doctor inserts a thin, flexible tube (endoscope) through your mouth, esophagus and stomach into your small intestine and takes a sample of intestinal tissue to look for damage to the villi (tiny, hair-like projections in the walls the small intestine that absorb vitamins, minerals and other nutrients).

Practice Guidelines for Treatment of Celiac Disease with an Aggressive Life-long Gluten-free Diet

As there is presently no cure for celiac disease, avoiding gluten is crucial. Practice guidelines call for a life-long diet free of gluten as the standard treatment for celiac disease. To manage the disease and prevent complications, its essential that patients avoid all foods that contain gluten. That means it is crucial for the patient to avoid all foods made with wheat, rye, or barley. This includes types of wheat like durum, farina, graham flour, and semolina. Also, bulgur, kamut, kasha, matzo meal, spelt and triticale. Examples of products that commonly contain these include breads, breading, batter, cereals, cooking and baking mixes, pasta, crackers, cookies, cakes, pies and gravies, among others.

It is also good practice in treating celiac disease for patients to avoid oats, at least during initial treatment stages, as the effects of oats on celiac patients are not fully understood, and contamination with wheat in processing is common. So, its a good practice when first adopting a gluten-free diet to eliminate oats, at least until symptoms subside, and their reintroduction into the diet can be fairly monitored and evaluated.

Another good practice is coaching celiac patients to avoid processed foods that may contain hidden gluten. Wheat flour is commonly used in many processed foods that one might never suspect. A few examples include candy bars, canned soup, canned meat, energy bars, ketchup, ice cream, instant coffee, lunch meat, mustard, pastas, processed meat and sausages.

Also, gluten is also commonly found in many vitamins and cosmetics, such as lipstick, and in the production of many capsules and tablets, where wheat starch is a commonly used binding agent. Obviously, patients must avoid beer (most is made using barely, although there are gluten-free beers on the market), though wine, brandy, whiskey and other distilled and non-wheat or non-barley alcohols are okay.

Celiac patients are encouraged to eat a diet rich in fish, fresh meats, rice, corn, soybean, potato, poultry, fruits and vegetables. Initially celiac patients should also avoid milk and other dairy products, as it is common for patients with celiac disease to be lactose intolerant. Dairy products can often be slowly reintroduced into the diet over time with successful treatment.

It is also important for patients to learn to identify gluten-free foods. Because a gluten-free diet needs to be strictly followed, and because food ingredients may vary from place to place and even over time for a given product, it is important to always read ingredient labels.

For lists of gluten-free foods and products, and for specific advice on adopting, shaping and maintaining the gluten-free diet that is right for them, patients may wish to consult a registered dietitian who is experienced in teaching the gluten-free diet, or purchase a commercial gluten-free product listing.

Most patients who remove gluten from their diets find that their symptoms improve as inflammation of the small intestine begins to subside, usually within several weeks to several months. Many patients who adopt a gluten-free diet report an improvement within 48 hours. Results of a gluten-free diet can be especially dramatic in children with celiac disease. Not only does their diarrhea and abdominal distress usually subside but, frequently, their behavior and growth rate are often markedly improved.

A reappearance of intestinal villi nearly always follows an improvement in symptoms. In younger people, the villi may complete healing and re-growth in several months, while in older people, the process may take as long as two to three years.

In cases where nutritional deficiencies are severe, celiac patients may require vitamin and mineral supplements to help bring about a healthier vitamin profile: folic acid and B12 for patients with anemia due to folate or B12 deficiency; vitamin K for patients with an abnormal ProTime; calcium and vitamin D supplements for patients with low blood calcium levels or with osteoporosis. For all such cases, individuals should consult their health professional.

Skin lesions common in patients with dermatitis herpetiformis often improve with adherence to a gluten-free diet.

The Importance of Follow-up Testing for Celiac Patients on a Gluten-free Diet

Research indicates that only half of those patients who have had celiac disease for at least 20 years were following a strict gluten-free diet. Up to 30% of those patients showed evidence of bone loss and iron deficiency. These are but a few of the long-term consequences for celiac patients failing to follow a gluten-free diet.

Thus, it is important to conduct follow-up testing of celiac patients to determine the success of their gluten-free diets, and the progress of their treatment, and to make any necessary adjustments to each.

Even done properly, with no accidental consumption of gluten, the elimination of gluten antibodies from the blood takes months. To estimate the treatments effectiveness, current guidelines call for a single serological testing after 3-6 months on a gluten-free diet. In addition many doctors recommend an annual serological screening and biopsy to make certain that the disease is properly controlled.

For patients who are free of antibodies, and actively following a gluten-free diet, it is wise to consult a doctor if there is any recurrence of celiac-associated symptoms. First degree relatives of celiac patients should have a repeat blood test every 2-3 years.

health writer who lives in San Francisco and is a frequent author of articles for Celiac.com.

People with untreated celiac disease typically have abnormally high levels of associated antibodies including anti-gliadin, anti-endomysium and anti-tissue transglutaminase. The presence of these antibodies is caused by an immune system reaction to the presence of gluten in the body.

When people with celiac disease eat foods or use products containing gluten, the response from their immune system damages the tiny, fingerlike protrusions lining the small intestine, called villi. Properly working villi allow nutrients from food to be absorbed into the bloodstream. When villi are damaged, vital nutrients go unabsorbed. In addition to vitamin deficiencies and their associated maladies, left untreated, villi damage can result in full-blown malabsorption, accompanied by nerve damage, wasting, and organ distress and failure.

Until fairly recently doctors believed celiac disease was quite rare, and only affected about 1 in 5,000 people. It was also thought of a disease that mostly affected babies and very young children. Recent studies, however, put the estimate of celiac sufferers at 1 in 133 people in the United States. Most people with celiac disease still dont know that they have it.

More alarmingly, many experts believe that Non-Celiac gluten intolerance could be upwards of 15 times more prevalent than full-blown celiac disease. According to some experts up to 15% of people worldwide—a full 1 in 7—are gluten-sensitive or gluten-intolerant. These people often test negative or inconclusive for Celiac Disease, but can still suffer the same symptoms and long-term problems when they ingest gluten.

Signs and Symptoms of Celiac Disease

Its very important to diagnose both celiac disease and Non-Celiac gluten intolerance early before any serious damage to the intestine occurs. However, both can be difficult to diagnose because their symptoms are easily confused with other intestinal disorders, such as irritable bowel syndrome or lactose intolerance, thus many people may never discover that they have some level of gluten sensitivity.

Some common general symptoms of celiac disease are diarrhea, abdominal pain and bloating, and weight loss. People with the disease may feel overly tired, and they may also be irritable or depressed. Some have skin rashes and mouth sores. Teens with undiagnosed celiac disease may go through puberty late.

Symptoms of Celiac Disease can vary greatly from individual to individual, and even among family members. Symptoms may occur in the digestive system, or in other parts of the body. For example, one person might have diarrhea and abdominal pain, while another person may be irritable or depressed. In fact, irritability is one of the most common symptoms in children.

Obviously, since so much growth and development crucial to human well being takes place in infancy and childhood, and since so much of that development hinges on proper nutritional absorption, any condition which hinders absorption is especially important diagnose and treat in the earliest possible stages.

More specific symptoms of celiac disease may include one or more of the following:

• behavioral changes
• bone or joint pain
•  chronic diarrhea
• delayed growth
• failure to thrive in infants
• fatigue
• gas
• infertility, recurrent miscarriage
• itchy skin rash called
• dermatitis herpetiformis
• missed menstrual periods (often because of excessive weight loss)
• muscle cramps
• osteoporosis, osteopenia
• pale, foul-smelling, or fatty stool
• pale sores inside the mouth, called aphthous
• recurring abdominal bloating and pain
• seizures
• tingling numbness in the legs (from nerve damage)
• tooth discoloration or loss of enamel
• unexplained anemia (a low count of red blood cells causing fatigue)
• weight loss / weight gain

Screening for Celiac Disease

A simple blood test can reveal high levels of anti-gliadin, anti-endomysium and anti-tissue transglutaminase antibodies, and is often used for initial detection among people who are most likely to have the disease, and who may need further testing.

For anyone with a family history of celiac disease or of disorders such as thyroid disease, anemia of unknown cause, type I diabetes or other immune disorders or Downs syndrome, doctors may suggest routine screening. Otherwise, patients are generally screened on a case-by-case basis according to individual symptoms.

If a blood test for gluten antibodies is positive, your doctor will likely order a biopsy to confirm a diagnosis of celiac disease. A biopsy is where your doctor microscopically examines a small sample of intestinal tissue, looking for celiac associated damage to the small intestine.

To get the sample, your doctor inserts an endoscope (a thin, flexible tube) into your mouth, down your esophagus and into your stomach and small intestine to take a small sample of intestinal tissue to look for damage to the villi (the tiny, hair-like projections in the walls the small intestine that absorb vitamins, minerals and other nutrients).

Non-Celiac Gluten Intolerance

Many people with celiac disease are still screened using antiquated methods. After a positive serology test a patient might be given a biopsy (or not—depending on how high their antibody levels are—again elevated antibodies may mean gluten sensitivity), however, the pathologist who interprets the samples may not use the latest Marsh classification system to make the diagnosis, or they may use it but classify the samples incorrectly, any of which can lead to a missed diagnosis. Most people with gluten intolerance will never get tested at all, and if they do their results often end up in the "inconclusive" or grey area for the reasons discussed above. Consequently this undiagnosed or inconclusive group of people may miss out on discovering the simple and drug-free remedy of a gluten-free diet which will lead to a dramatic recovery for those with symptoms (many people with celiac disease or Non Celiac gluten sensitivity do not have any symptoms).

For those who end up in the grey area of inconclusive test results, an elimination diet may be the only method to determine their problem. Many people discover that they have gluten intolerance only after they eliminate it from their diet. The more symptomatic the patient, the more obvious it will be when they eliminate gluten. For those with little or no symptoms this method may not work. Most elimination diets also exclude other common food allergens for several weeks such as soy, cows milk, corn, nuts, etc., and then the items are slowly added back to the diet while the patient pays close attention to any symptoms.

Treatments for Celiac Disease

There is presently no cure for celiac disease or Non Celiac gluten sensitivity, however, totally eliminating gluten from the diet leads to a full recovery in most cases, thus a 100% gluten-free diet is the standard treatment for celiac disease.

To manage the disease and prevent complications, its essential to avoid all foods that contain gluten. People with celiac disease must avoid all foods made with wheat, rye, or barley. Including types of wheat like durum, farina, graham flour, and semolina. Also, bulgur, kamut, kasha, matzo meal, spelt and triticale. Examples of products that commonly contain these include breads, breading, batter, cereals, cooking and baking mixes, pasta, crackers, cookies, cakes, pies and gravies, among others.

It is also important to avoid oats, at least during initial treatment stages of a gluten-free diet, this is because the effects of oats on celiac patients are not fully understood, and wheat contamination in processing is common. Thus, its safe to eliminate oats at least until symptoms subside and their reintroduction into the diet can be fairly monitored and evaluated. Avoid processed foods that may contain hidden gluten. Wheat flour is commonly used in many processed foods as a thickener or a binder.

The good news is that by avoiding gluten your small intestine can and will begin to heal. Fortunately, the gut can and usually does heal. The majority of celiac disease and gluten intolerant patients who go on a gluten free diet experience a significant reversal of all symptoms and intestinal damage within year, and most begin to feel better within in a few days. In patients with severe damage the healing process may take years, and may require eliminating other offending foods from their diets in addition to gluten.

Because the genetic makeup that leads to gluten intolerance cant be altered, a persons immune system will continue to react to gluten whenever it is ingested and the symptoms and problems will return if a person with celiac disease starts eating gluten again.

health writer who lives in San Francisco and is a frequent author of articles for Celiac.com.

Thats because people with celiac disease are intolerant of the protein gluten. Gluten is found in wheat, rye, and barley (oats contain a type of gluten that may be safe for most celiacs), and is found in the soft, white inside of the grain, its what makes dough, and flour and water paste, sticky and gooey.

When people with celiac disease eat food made from these grains, even in small amounts, their immune systems seem to treat the gluten as foreign invader, and basically create a massive defensive action against what might be, for most people, part of a good healthy diet. The immune reaction that is triggered by gluten causes inflammation of the intestines, which leads to many problems that are associated with malabsorption, and ultimately to the general gastrointestinal malaise associated with undiagnosed celiac disease, or with gluten contamination in otherwise mindful celiac patients on a gluten-free diet.

Diagnosis and Treatment of Celiac Disease are Important

Unless celiac is treated, it becomes difficult for the digestive system to absorb enough nutrients from food to carry on proper body functions, and resulting vitamin deficiencies can cause a wide range of symptoms, including a condition known as malabsorption. Weight-loss, listlessness, feeling or looking malnourished, are all signs of the nutritional malabsorption associated with untreated celiac disease.

Left untreated, celiac disease can become life-threatening. People can waste away. More likely though are higher instances of certain cancers, particularly of the intestines, and other diseases associated with untreated celiac disease. Thats why its advisable for people with any of these symptoms to check with their doctor to ensure a proper diagnosis, and to have follow up wellness checks.

Even a negative blood test for celiac disease doesnt mean youre fully out of the woods. For a long time, research put the number of celiac patients at around 0.5% of the worlds population, or around 1 in 200 people. Recent studies however, have shown that to be a low estimate, and incidence is more likely around 1% of the population, or 1 in 133 people. Celiac Disease, however, is looking more and more like a very small part of the much larger Gluten sensitive picture.

More ominous still, new evidence shows Non-Celiac Gluten intolerance to be around 30 times more prevalent than celiac disease, and if could affect up to 15% of people worldwide. 1 in 7 people are gluten-sensitive or gluten-intolerant. These people test negative or inconclusive for Celiac Disease, but suffer most of the same symptoms and long-term problems associated with celiac disease when they ingest wheat. This group of people are sometimes referred to as Non-Celiac Gluten Sensitive.

Because the symptoms overlap with many other ailments, Gluten intolerance can easily be missed or misdiagnosed; especially in light of negative blood or biopsy tests--and this may lead many to miss out on discovering the simple and drug-free remedy of a Gluten-free diet for a dramatic recovery. If classic screening techniques for celiac disease do not identify the disease in someone who is in the Non-Celiac Gluten Sensitive category, or if the test results are borderline or inconclusive, often the only other approach to discover the problem is via the Elimination Diet.

Once the cause is understood, and the necessary adjustments are made to the diet, celiac disease and gluten sensitivity are easily treated. A diet free of gluten usually brings both short and long-term improvement. This isnt always quite as easy as it sounds, as so many processed foods contain hidden forms of wheat that are used as binding or flavoring agents.

Once you become aware of damaging foods and avoid them, a gluten-free diet can restore small intestine function within a few weeks to a few months. Once the mucosa of the intestine is no longer inflamed, most absorption issues will usually subside. The inflammation in the intestine will subside as gluten is eliminated.

Echinacea and goldenseal may help to speed this process along. These two immune system boosters are often packaged together in capsule form. You may also find Echinacea and goldenseal in combination with slippery elm, marshmallow, geranium, and other herbs. This combination goes by the generic name of Roberts Formula, and is made by a number of manufacturers. Roberts formula treats the digestive tract by creating a beneficial layer of slime that is healing to digestive tissues. Check your local health food store.

Echinacea and goldenseal are important healers because they have anti-inflammatory and antibacterial properties. One cautionary note, however: Dont take these herbs continuously. Generally, two weeks on and two weeks off for a period of up to two months.

How to Replace Lost Nutrients Caused by Untreated Celiac Disease

At the very least, most celiacs will benefit from a daily multivitamin/mineral supplement that includes calcium, 1,000 milligrams, along with 400 milligrams of magnesium (note that too much magnesium can cause diarrhea). Lack of vitamin B6 is partly to blame for symptoms of celiac disease, Pyridoxal-5-Phosphate (P-5-P) is often a good choice, as it requires no conversion to make vitamin B6, and can be easier on the stomach.

Vitamins can also speed healing. Because the absorption of fats is particularly poor in celiacs, many celiac patients commonly suffer deficiencies of vitamins A, C, D, E, and benefit from taking these in supplemental form, along with a chelated form of zinc supplement. As with any supplement, read the directions and keep your doctor fully informed about what you are taking and how much.

A typical dose, for example, is 1,000 to 2,000 international units (IU) of vitamin A in the form of fish oil (too much can have toxic effects so discuss this with your doctor), 100 to 200 IU of vitamin D also in fish oil, 500 to 1000 milligrams of vitamin C, 100 to 400 IU of vitamin E, and 15 to 30 milligrams of chelated zinc.

Check with your doctor before taking more than 20 milligrams of zinc. Beta-carotene, 10,000 I.U. daily, can also be helpful, as can Iron, 60 mg. daily, if a blood test indicates iron deficiency.

In addition to a good multivitamin/mineral for support, and other vitamins, digestive enzymes, which digest gluten, may also be helpful. To improve nutrient absorption and assimilation, these should be supplemented.

Celiac patients also often suffer a deficiency of vitamin K., which can be supplemented through green foods, especially alfalfa. Green food supplements contain many essential nutrients, including trace minerals. Evening primrose oil is a good source of the omega-6 essential fatty acids that celiac patients often lack.

Silica soothes inflammations in the gastrointestinal tract. It is available in both capsules and gel form.

Medicinal clay is excellent in promoting healing of the walls of the colon and protecting it from irritation by toxins and dry, abrasive matter.

Daily Dosages of Supplements for Celiacs:

• Green food supplements, 1 tbsp.
• Evening primrose oil, two 500 mg capsules three times daily
• Multivitamin supplement, as directed on the label
• Medicinal clay, dissolve 1 tsp. of clay in ½cup of water at room temperature and drink twice daily.
• Papain, 500 mg three times daily
• Pyridoxal-5-Phosphate, 50 mg daily
• Silica, 3-6 capsules; in the gel form, follow the directions on the label
• Vitamin B complex, 50 mg twice daily
• Vitamin B12, 100 mcg
• Vitamin C, with bioflavonoids, 5,000 mg one to three times daily

Herbal Remedies in the Treatment of Celiac Disease

Herbal remedies can help soothe intestinal irritation and inflammation and heal damaged mucous membranes.

• Roberts Formula
• Take 4 drops of agrimony tincture in water, three times daily.
• Sufficient silica in the intestines will reduce inflammation, and strengthen and rebuild connective tissue. Take 3 cups of silica-rich horsetail tea or 15 drops of tincture in liquid three times daily.
• A combination of burdock, slippery elm, sheep sorrel and Turkish rhubarb tea helps different types of inflammations in the gastrointestinal tract.
• Use dandelion, saffron and yellow dock herbal teas to that purify and nourish the blood.
• Pickled ginger can be eaten for anti-inflammation properties.

Avoiding gluten is crucial

A life-long diet free of gluten is the standard treatment for celiac disease. To manage the disease and prevent complications, its essential to avoid all foods that contain gluten. That means it is crucial to:

Most patients who remove gluten from their diets find that their symptoms improve as inflammation of the small intestine begins to subside, usually within several weeks. Many patients who adopt a gluten-free diet report an improvement within 48 hours.

Results of a gluten-free diet can be especially dramatic in children with celiac disease. Not only does their diarrhea and abdominal distress usually subside but, frequently, their behavior and growth rate are often markedly improved.

A reappearance of intestinal villi nearly always follows an improvement in symptoms.

In younger people, the villi may complete healing and regrowth in several months, while in older people, the process may take as long as two to three years.

In cases where nutritional deficiencies are severe, celiac patients may require vitamin and mineral supplements to help bring about a healthier vitamin profile: folic acid and B12 for patients with anemia due to folate or B12 deficiency; vitamin K for patients with an abnormal ProTime; calcium and vitamin D supplements for patients with low blood calcium levels or with osteoporosis. For all such cases, individuals should consult their health professional.

Skin lesions common in patients with dermatitis herpetiformis often improve with adherence to a gluten-free diet.

For patients with celiac disease, the importance of maintaining a life-long diet free of gluten can hardly be over-stressed. Research indicates that only half of those patients who have had celiac disease for at least 20 years were following a strict gluten-free diet. Up to 30% of those patients showed evidence of bone loss and iron deficiency. These are but a few of the long-term consequences for celiac patients failing to follow a gluten-free diet.

• Autoimmune thyroid disease
• Lupus erythematosus
• Microscopic colitis
• Rheumatoid arthritis
• Type 1 diabetes

Also, celiac disease and the tendency to get celiac disease runs in families. If one member of a family has celiac disease, the odds are that about one in ten of their first-degree relatives will also have it. People may harbor this tendency for years or even decades without showing signs or getting sick. Then, some kind of severe stress, like childbirth, infection, physical injury, or surgery can "activate" celiac disease.

While the precise mechanism of this activation, and of the intestinal damage is unclear, removal of gluten from the diet usually brings about quick relief of symptoms and promotes intestinal healing in most patients.

• Tests your bone density (osteoporosis is more likely in those with untreated celiac disease);
• Tests your blood for iron and folate deficiencies;
• Vaccinates you for pneumococcal disease (serious infections are common in immune-stressed individuals. This step will vary with your overall condition upon diagnosis and may not be necessary).

Other recommendations for initial management of celiac disease:

Many people with celiac disease have additional food intolerance, and therefore never fully recover on a gluten-free diet alone. If you fall into this category try the following:

Many people who have had difficulty recovering from celiac disease have found that maintaining a "paleo" perspective which favors unprocessed meats, vegetables, and fruits while avoiding all grains, is the final step necessary for a complete recovery.

1) The nutrient content of whole grains and their unrefined flours is greater than refined flours. White flour has been considered by some an inferior food since it is missing some micro-nutrients. However white flours and light white bread are sometimes better tolerated than the whole grain foods.

2) The indigestible fiber in whole grains contributes to stool bulk, reduces the opportunity for constipation, and absorbs toxic or harmful molecules, which, escorted from the bowel by fiber, have less opportunity to do harm. The regulating and binding actions of grain fibber, it is argued, would reduce the incidence of bowel cancer, if eaten over a lifetime. The favorable fibers are probably better found in vegetables and fruit. While there favorable arguments for a high cereal grain intake there are major problems with these foods. Craving and compulsive eating of flour-based foods is common, especially the reward an dessert foods, containing sugar. These high-carbohydrate foods contribute the major caloric input to obese persons.

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 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.

There are at least four mechanisms involved at the bowel level for gluten intolerance:

1) Lack of the digestive enzyme, intestinal glutaminase.

2) Antibody production to the prolamine, or a fragment of it.

3) Increased permeability of the bowel to macromolecules including the antigenic protein and its fragments.

4) Increased production and release of mediators such as histamine, seratonin, kinins, prostaglandins, and interleukins.

A wheat gluten-triggered mechanism has been studied in rheumatoid arthritis patients. The clinical observation is that wheat ingestion is followed within hours by increased joint swelling and pain. Little and his colleagues studied the mechanism, as it developed sequentially, following gluten ingestion. Platelet Seratonin Release in Rheumatoid Arthritis: A study in Food Intolerant Patients. Little C. Stewart A.G., Fennesy M.R. Lancet 1983.297-9.

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 (Unsworth, D.J., et. al., IgA Anti-Gliadin Antibodies in Celiac disease, Clin Exp Immunol. 1981: 46:286-93.Keiffer M, et. al., Wheat Gliadin Fractions and Other Cereal Antigens Reactive with Antibodies in the Sera of of Celiac Patients, Clin Exp Immunol. 1982;50:651-60).

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.

If we look at the different grains we find that each has its own prolamine. The following list gives the type of prolamine each grain contains, and the percentage of protein the prolamine has in relationship to the entire grain:

• Wheat - Gliadin - 69%
• Rye - Secalinin - 30-50%
• Oats - Avenin - 16%
• Barley - Hordein - 46-52%
• Millet - Panicin - 40%
• Corn - Zien - 55%
• Rice - Orzenin- 5%
• Sorghum - Kafirin - 52%

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 [bell L., Hoffer M., Recommendations for Foods of Questionable Acceptance for Patients with Celiac Disease,J.Can. Dietetic Ass'n: 1981; 42:2; 143-15]. 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 usual definition of celiac disease links chronic diarrhea, with evidence of malabsorption, and changes in the surface of the small bowel. Most medical textbooks dogmatically state that an intestinal biopsy must be taken and must show typical changes before the diagnosis is made. The biopsy allows a pathologist to examine microscopically the surface of the small intestine. The surface of the small intestine is covered by a dense mat of projecting nipples called villi which shed cells containing digestive enzymes, and absorb food molecules. In long-standing celiac disease one expects the villi to be blunted and the surface to be smoothed out. While the biopsy is a useful procedure it has several drawbacks;

It is a procedure with a small incidence of dangerous complication, especially bowel perforation.

It is a small sample and may miss patchy or irregular bowel changes.

Significant protein intolerance, and increased bowel porosity may exist despite normal appearance of the bowel lining under the microscope.

Patients in remission or with intermittent symptoms may have normal biopsy results but remain exquisitely sensitive to some prolamine, or peptide fragment challenges. [bjarnson, I., et. al., Intestinal Permeability Defect in Celiac Disease, Lancet. 1983 1284-85].

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.

Diagnosis of gluten-sensitivity in all disorders may be facilitated in the near future by better immunological laboratory tests, including measurement of circulating serum antibodies directed against these proteins, and of circulating immune complexes which contain food antigens. [O'Farrelly, et. al., Alpha-Gliadin Antibody Levels: A Serological Test for Celiac Disease, 1983 Lancet; 286:2007-2010]. Better tests would permit the demonstration of increased GITPERM, and the entrance of abnormal macromolecules after test meals. Eventually the path through the body of such molecules may be studied by labeling them with isotopes, and tracking them with scanning methods like positron emission tomography.

Irritable Bowel Syndrome

An unexplained bowel disturbance, characterized by abdominal pain, gas, diarrhea, often alternating with constipation, is diagnosed as the "Irritable Bowel Syndrome" and too often attributed to "psychogenic causes". We recognize right away that the label "psychogenic causes" describes the lack of biological understanding more than it describes the patient's problem. The treatment usually offered includes bulk laxatives, tranquilizers mixed with antispasmodic drugs, and not infrequently, a trip to the psychiatrist, who is not likely to do a dietary history. The success rate with these methods in one study was only 12%! [Waller, S.L., Misiewicsz: Lancet 1969 ii: 753-6, Prognosis in Irritable Bowel Syndrome].Food studies are seldom undertaken in the assessment of patients with irritable bowel syndrome. Not a single patient whom I have seen with this disorder has had a food diary examined, nor any trial of exclusion diets. Dietary advice commonly-given includes "high-fibber" diets, usually increased cereal grains, which are contraindicated. Studies which allege to rule out food intolerance are poorly conducted, often basing negative results on limited, selected food challenges. Proper studies would utilize the complete methodology of diet revision therapy, and would observe patients in real-life conditions, ingesting real food over a significant period of time.

The irritable bowel syndrome is at least in part a food-intolerance disorder, and the program outlined in this book will generally be helpful. In a recent study by V. Alum Jones et al, food intolerance was shown to be a major factor in causing the irritable bowel syndrome in 25 patients. This study is of particular interest because it was arranged to reveal something of the mechanism of this disorder. The results indicate that this particular presentation of food intolerance was not the result of immune events, was not associated with high blood-histamine levels, nor circulating immune complexes. Rather the disturbance seemed to be related to increased levels of Prostaglandin E2 (PGE2), synthesized and secreted by the bowel itself. Prostaglandin production is inhibited by ASA, and all of the other anti-arthritic medications, and may prevent the irritable bowel effect if taken before meals. The foods causing the irritable-bowel symptoms were (in order of frequency)

• Wheat...9
• Corn .... 5
• Milk.... 4
• Coffee. 4
• Tea..... 3
• Citrus.. 2

All the patients found to be intolerant of wheat had normal results of intestinal biopsy. Not all wheat-induced bowel disorders are celiac disease! The important point, once again, is that the mechanisms of food intolerance are multiple and complex! The only practical way to study food intolerance is by trials of dietary revision, and challenges with real food. One interesting observation made by several of my patients is that they always got somewhat better while in hospital, having multiple tests done. Psychological factors? No. Hospital tests for gastrointestinal disorders always involve days of fasting. If you stop eating foods that are hurting you, your symptoms improve! Proper NP may avoid the waste, in terms of dollars and disappointment, that inappropriate medical investigation and treatment incurs, when a trial of appropriate DRT will often cure the "disease" under investigation.

This not to deny that emotions influence bowel function, since this is clearly the case. The "Gut Brain Axis" has become a subject of specialized study because of the complexity of interaction of these two life-determining organ systems. Food selection, emotional experiences, and eating behaviors interact complexly. Anger, frustration, fear will profoundly influence food selection, appetite, digestion, and metabolism; while food selection, digestion and metabolism will determine your emotional reactivity. There is a continuous loop of causal relationships, not a one-way vector. When patients are told they have bowel dysfunction because of stress, tension, or anxiety, this is only a half truth. The other half of the truth is that patients have stress, tension, and anxiety because of bowel dysfunction.

The more subjective mood-related symptoms are difficult to assess, and are attributed to "psychiatric causes" although no authority seems to know what that means! The brain effects are an expression of disorderly molecular flow through the brain. Specific nuero-active effects of grains include the circulating peptides, which have been described earlier in the book, as WMOD, and are further discussed in the last section of this chapter.

Indications for Trial of Gluten Restriction

NP advocates liberal gluten restrictions in a variety of circumstances, simply because the results are surprisingly good. The core diet developed by clinical trials, and described in subsequent chapters is initially free of cereal grains, since they are frequent offenders in food intolerance problems. Not only patients with bowel disorders benefit, but also people whose bowels function apparently well but suffer, fatigue, aching, swelling, and brain disturbances, expressed as mental and emotional upheavals.

The specific patterns of disturbance which should invite a trial of the food-testing plan, and gluten restriction specifically are: Diarrhea, prolonged over three weeks, not associated with infections, or evidence of parasites or pathogenic bacteria in stool samples.

Abdominal pain, especially if frequently recurrent, and associated with excess gas, and abdominal distensio (Irritable Bowel Syndrome).

Anemia from iron, folic acid, or nutrient deficiency which is unexplained by blood loss, or dietary inadequacy, especially if associated with abdominal symptoms.

Aching disorder, especially if the aching is generalized, associated with stiffness with inactivity, and dysethesiae ( odd burning, tingling sensations), and tender muscles. Any arthritic pattern, associated with diarrhea should be vigorously managed with gluten, milk, and egg restriction with careful testing of other foods for possible reactions.

Fatigue, especially if associated with irritability, confusion or fuzzy-headedness, headache, and abdominal discomforts.

Chronic asthma and rhinitis.

Neurological symptoms which are unexplained by recognized abnormalities in physical examination and laboratory investigations. These symptoms include the above mentioned, memory disturbances, sleep disturbances, visual distortions, muscle weakness, and fasiculations (wiggly, jerking movements within muscles). A trial of gluten restriction is also appropriate in children with learning disability, schizophrenics, alcoholics, and patients with refractory mood disorders.

Treatment of Grain Intolerance

Exclusion of wheat, rye, barley, 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 - Durham flour, Triticale, and Bugler 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. NP does not consider it adequate therapy for a single food group to be eliminated, on the assumption that every other food will be well tolerated. 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 The rice prolamine, orzenin, is different enough from gliadin to avoid immunological cross-reaction.

Rice: Desirable Staple Food

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. Rice may also produce the total grain syndrome, although this is uncommon in my experience. Following the core hypoallergenic diet plan, you will simply not miss cereal grains for a while, and find the variety and diversity of other vegetables, sufficient to sustain your interest and nutrition. The biggest challenge is to make the effort to choose different foods, and to prepare them attractively.

Corn is less well tolerated than rice

Our packaged, fast-food, and restaurant-food industries rely heavily on wheat flour to produce their products. The person on a gluten-free diet must make an extra effort to avoid these products, and to eat instead primary foods, including fresh produce, meats, fish, and rice.

Most of my patients crave a carbohydrate food, if not a sugar food, then bread, buns, crackers, chips, nuts and so-on. Rice is a good alternative, being a starchy vegetable which turns sweet if you chew it for a while. Having rice available in a bowl in the refrigerator, mixed with vegetables, herbs, meats or fish offers an alternative to gluten-laden snack foods. Pasta is made with high gluten flour and is off our list of core diet foods. Again Rice is good alternative to pastas.

Buckwheat

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 a 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.

Other Alternatives to Cereal Grains

Other starchy vegetables may stand in for grains. The potato is a starchy tuber, and potato starch can be used as a weak imitation of flour. Other roots are available, including Cassava an African vegetable which produces Arrowroot flour Tapioca is made by heating and moistening arrowroot. Flour is also made from Taro, a Japanese tuber, which is common in Hawaii where POI is a staple paste made from Taro roots. Soya beans are versatile and highly nutritious seeds which can be utilized as a flour as well. Tofu is the protein fraction of Soya beans, and is an inexpensive, nutritious food, used widely in the orient as a protein staple. It must be mixed with corn or another legume to produce a full complement of essential amino acids. The main problem with tofu is learning how to cook with it. Other legumes including, chick peas, lentils, peanuts are useful foods, on a gluten restricted diet, but have their own problems which must be considered before regular use of these foods is entertained.

Each recommended food is still subject to testing, however, for each food may produce allergens or cause other problems. As with all foods in a sensitive person, the basic rule is - Find out how the food works in your body! Gluten-free diets specify food exclusions, including a variety of manufactured foods which contain Gluten. One generally can figure out what is not desirable by thinking of the probable origins of the food in question. Gluten exclusion does include malt, a barley product, and malt containing beverages (Postum, Ovaltine); beer and ale. Alcohol is usually excluded, although some tolerance may be found to selected wines, and distilled beverages. [Food for Celiacs; Campbell, J.A. : Journal of the Canadian Dietetic Ass'n., Jan '82 ; 43:1; 20-24; Gluten Free Cookbook: Leicht, L., RR#1 Box 54, Pender Island B.C. VON 2MO; Club House Foods 316 Rectory St. PO Box 788 London Ont. N6A 4Z2].

The focus of a gluten-free cookery is often on replacing gluten flour in baked goods with starches made from rice, arrowroot, potato, Soya beans, other legumes like chickpeas,and wheat starch (all the protein has been carefully removed). While baking can be done with these non-gluten "flours", the results are never as satisfying as with wheat flour. Gluten is the most desirable ingredient in flour for producing bread, and baked goods, and its absence is conspicuous. In many respects it is easier, kinder, and nutritionally wiser to forgo the baked goods in large measure and eat other foods. The task of changing your diet is very much like moving to another country and culture. You may try to bring all your old habits with you, and struggle to get all of the ingredients that you are used to forming into meals, or you can gracefully, and with a sense of adventure try the new cuisine. Certainly bakery foods are delicious and tempting, but so are creatively prepared rice, vegetable, fruit, fish, and meat meals. Even with multiple exclusions, an appealing, varied diet is within reach if you are willing to change your eating style. A book of recipes which de-emphasizes, cereal-grains, eggs, and milk is a great asset. The cookbook "Oriental Food Feasts" is full of recipe ideas from China, Japan, Indonesia, and India. One has to select recipes that utilize foods, appropriate to your dietary needs. The main thing is to be inspired to create and enjoy a new cuisine that will diminish your disturbances, sustain your interest in food, and provide balanced nutrition. [shepard, S.M., Oriental Food Feasts, Arco Publishing, Inc. New York 1979]. Vegetable selection and preparation is one of the prerequisites of a successful diet revision. The Tassajara cookbook is my favorite introduction to the subject [Tassajara Cooking; 1973 Zen Centre; San Francisco; Shambala Publications, Inc. Boulder, CO.] .

Neuropsychiatry & Gluten Intolerance

We have recognized that Gluten intolerance may involve the absorption of complete proteins like gliadin, or its peptide- fragments; anti-protein antibodies circulating in the blood, which form immune-complexes with the food protein, and provoke the release of mediators which may cause multiple disturbances in all body systems, and even tissue damage. These circulating problems may also influence brain function in a variety of undesirable ways. There is vague circumstantial evidence of an adverse grain effect on metal status. A family history of psychiatric problems is more common in patients with celiac disease. Celiac disease is genetically determined involving two or more concurrent genes. The genes involved are part of the immune-recognition complex, which determine the "Self" identity markers, protecting one's own cells from attack by the immune system. Celiac patients have an increased frequency of the serum histocomptability antigens (self-markers) of the HLA-B8 and HLA-Dw3 types. This genetic marker may indicate a predisposition for bowel absorption abnormalities or immunologic propensities, which result not only in celiac disease itself but other contingent abnormalities as well.

Schizophrenia has been associated with gluten intolerance. The diagnosis, schizophrenia, describes a variety of differing individuals who belong to complex group of brain-disordered people. The schizophrenic brain distorts sensing, feeling, remembering, deciding, and acting. It is unlikely that schizophrenia is a single disease with a single cause. The milder, but similar brain dysfunctions which I observe commonly with gluten and other food intolerance, suggests that food allergy may play a role in schizophrenia, with gluten as a frequent triggering antigen. Dr. F.C.Dohan has consistently advocated a gluten-schizophrenia link for 20 years [Dohan, F.C., Cereals and Schizophrenia: Data and Hypothesis, 1966 Acta Psychiatr. Scand 42:125-42; Dohan, F.C. More, Celiac Disease as a Model for Schizophrenia, 1983 Biol. Psychiatry 18:561-4].

Dr. Dohan states:

[" Many diseases are caused by genetically-deficient utilization of specific food substances. Perhaps the best studied example is phenyketonuria... far more common disorders, for example, atherosclerosis, and coronary heart disease, are strongly suspected of being due to genetically defective utilization of certain food constituents. " Similarly, considerable evidence indicates that the major cause of schizophrenia is the inborn inability to process certain digestion products of some food proteins, especially cereal grain glutens..."]

Among Dr. Dohan's interesting an relevant recommendations is the idea of a "Gluten tolerance test". Such a test has not yet been developed, but is the sort of evaluation method that NP advocates in general. A gluten tolerance test could be initiated with routine evaluations before and after ingestion of grain foods. More sophisticated versions would measure gluten proteins and derived peptides in the blood, and would track the path of these molecules into organs, especially the brain. Finally the impact of these molecules would be evaluated by monitoring the function of the target organ in real time. I have been eager to do real-time monitoring of brain activity, topologically-computed in gluten-sensitive patients. These patients report changes in their PSYE, cognitive abilities, and emotional state which no researcher to date has documented objectively. The problem of adverse brain effects of molecules derived from food is a major under-recognized phenomenon of nutrition and molecular pathophysiology. Research in the next 10-20 years will, I am convinced, reveal a great deal about the extent, mechanisms, and importance of this consequence of eating to our mental status.

Extracted from "Nutrition Therapy" by Stephen J. Gislason, MD

Dr. Joseph Murray, of the Mayo Clinic Rochester, MN, is a gastroenterologist who specializes in treating Celiac disease. He gave a talk entitled Celiacs in the 90s at a conference hosted by the American Celiac Society on June 10-11, 1994. What follows are highlights of Dr. Murrays talk. Dr. Murray comes from Ireland, where Celiac Sprue (CS) is much more common. In Ireland, people have a much easier time dealing with the gluten-free (gluten-free) diet, whereas in the US it is almost as though it were considered unpatriotic to not eat wheat. You can reach Dr. Murray at: Open Original Shared Link.

Dr. Murray believes that ALL Open Original Shared Link (DH) patients also have Celiac disease, whether they realize it or not. This celiac disease is often latent or silent. Earlier reports of patients with DH who did not have enteropathy (small intestinal damage) may not have counted milder forms of the celiac disease damage. (Editors note: Dr. Alexander, our physician advisor, believes most, but not all DH patients have Celiac disease.)

Not every Celiac patient suffers weight loss or has diarrhea. One of his patients is a woman who weighed 400 lbs. when she was diagnosed. Her symptoms included nocturnal pain, and constipation. After checking the stomach and some other testing, they did a small intestine biopsy. When they found the classic flat villi, they suspected a lab mix-up because the womans symptoms were so atypical. In this case, the woman was suffering from cravings that caused her to greatly overeat. She was nutritionally over- compensating for the small intestine damage. After being diagnosed, the patient went on the gluten-free diet, lost some of these cravings, and promptly lost 50 lbs.

Symptomatic Celiacs can be split into two groups: Those that have the classical CS symptoms and those that have atypical symptoms or only one of the classical symptoms. Patients in the first group are usually (though not always) diagnosed correctly by a gastroenterologist. Those in the second group, which make up about 2/3 of Dr. Murrays patients, are much more difficult to diagnose. Another factor is variable histology, which basically means that the villi are not always completely flat.

The average adult has more than 20 feet of small intestine, and often, only the very front part gets severely damaged. Often, the remaining portion of the small intestine is able to compensate for what the damaged section is not absorbing. Dr. Murray believes that we are seeing fewer diagnosed Celiacs in the US than in Ireland because our diets are very calorie-dense. This means that even with malabsorption you are still getting a lot of nutrients so that you absorb enough to not lose weight and not fully develop other symptoms.

Gluten causes damage that makes the gut leaky. This can lead to exposure of the bodys immune system to foreign allergens it would not otherwise see. This explains why Celiacs tend to have more allergies than the general population.

Dr. Murray believes there are several triggers that can activate Celiac disease in genetically susceptible people:

• A sudden change to a low fat diet, which usually means a sudden increase in starches, which usually means a dramatic increase in wheat-based products.
• A woman is susceptible during postpartum, when the immune system is adjusting to the changes after delivery.
• Surgery, particularly GI (gall bladder, etc.) can be a trigger.
• Certain viral infections. Also, there is some suspicion that certain antibiotics can be triggers, though in these cases it could also be the infection that the antibiotics are fighting.

Dr. Murray believes CS is not an allergy; it is an auto immune disease (Open Original Shared Link). For Celiac disease to develop, two conditions must be met:

• There must be a genetic predisposition towards Celiac disease. This involves very specific genetic factors.
• The auto immune system must be triggered in some way.

CS tends somewhat to run in families. The incidence in first degree relatives (parents, siblings, children) of a Celiac is about 10%. Anyone who has both a parent and a child with CS should be tested themselves for CS. CS is not entirely genetic. Among identical twins, if one has CS, about 70% of the time the other will also have CS. If the disease were entirely genetic, then the incidence in identical twins would be 100%. Among siblings that are HLA-matched to a Celiac sibling, the incidence of CS is about 30%. When not HLA-matched, the incidence rate is much lower.

According to Dr. Murray, since CS is an auto immune disease, it follows that there are other auto immune diseases that are associated with it. Rheumatoid Arthritis, Lupus, Type I Diabetes, and some eye problems may occur more frequently in CS patients. This is not because of gluten or CS itself; it is because CS patients are part of a group that is genetically predisposed towards auto immune problems. About 5% of CS patients also have DH. At the University of Iowa, there have been 350 patients diagnosed with DH. Dr. Murray believes these have celiac disease. If these DH patients are only 5% of the Celiacs, then there should be about 7,000 Celiacs in the Iowa area. The number of diagnosed Celiacs is much less than 7,000. Even if this extrapolation is exaggerated, it is still clear that there are many undiagnosed Celiacs out in the general population.

Most DH patients are prescribed Dapsone, which treats the symptoms. In most cases, they are told of the gluten-free diet, but it is not stressed and so most DH patients do not follow the diet. Dr. Murray finds this most distressing, because even if these patients dont have GI-related symptoms, there is still continual damage being done to the small intestine. Dermatologists, in general, dont give enough consideration to a GI problem as the source of DH. This places DH patients at an even greater risk of developing lymphoma in the small intestine.

Lymphoma in the small intestine is extremely rare in the general population. Untreated Celiacs have a 70 or 80 times greater chance of developing lymphoma. A lifetime of not following the gluten-free diet gives a Celiac about a 7% chance of developing lymphoma. There is also an increased risk of other GI-related and lymphatic cancers. The risk of developing lymphoma immediately begins to decrease when a Celiac patient starts following a gluten-free diet. The risk continues to decrease until, after 3-5 years, it approaches that of the general population.

Dr. Murray makes a small intestine X-ray a routine part of the treatment for a newly diagnosed adult Celiac patient, especially those over 40 years of age. Hes looking for lymphoma in the small intestine. It is very difficult to find, but if it is found it can usually be successfully treated.

DH is caused by reactions to antibody complexes that, for reasons not totally clear, become deposited under the skin. These DH breakouts can continue for a long time after a gluten-free diet is adopted, because these deposits are not reabsorbed by the body very quickly. In about 70% of the cases, dapsone treatments can be discontinued after 18 months-2 years; for the other 30% it takes longer.

How gluten-free should the diet be? Dr. Murray believes that Celiacs should treat gluten the same way they treat rat poison. Celiacs should never eat food if it is known to contain gluten. Accidental ingestion of gluten should be avoided as much as possible. For a Celiac, it is unacceptable for gluten to be ingested more than once a month, accidentally or otherwise. You can NOT judge whether a food has gluten by your reaction to it. Many Celiacs can ingest small amounts of gluten with no symptoms; however, the small intestine is still being damaged.

Dr. Murray stressed that once you have Celiac disease, you will always have it; you will never be able to eat wheat or other gluten-containing products again. This is a fact of life that Celiacs simply must accept and live with.

Lactose intolerance is not common in white Caucasian adults of northern European descent; probably close to 5%. (Editors note: According to Dr. Alexander, it occurs in about 30% of the adult US population.) A newly diagnosed Celiac may have temporary lactose-intolerance due to the damage in the gut; the intolerance should disappear once the gut heals. If you are lactose-intolerant, you should be aware that while ingesting lactose may make you uncomfortable, it does not damage the intestine. Most newly diagnosed Celiacs can use temporary lactose-intolerance as a way to check on the healing taking place. Once a month, they should drink half a glass of milk on an empty stomach and see if there is a reaction such as gas, cramps, diarrhea, etc. Failure to have a lactose reaction means that the gut is healing and the diet is working. For most people, lactose intolerance will disappear within six months of being on a gluten-free diet.

Dr. Murray advises Celiac patients against smoking. Newly diagnosed Celiacs, as well as those not following a strict gluten-free diet, already have an increased risk of malignancy. Celiacs cannot afford to increase that risk even further by smoking.

Refractory Sprue is a rare complication that generally occurs in older Celiac patients. This is a situation where malabsorption continues to occur even though the patient is on a Open Original Shared Link. Dr. Murray says the first three things you do when presented with refractory sprue are:

• Check the diet
• Check the diet again
• Check the diet a third time

Once you have verified that no hidden sources of gluten are causing the problem, then you recheck the diagnosis, look for enzyme supplements to help with digestion, check for pancreatic problems, lymphoma bacterial overgrowth, etc.

Diagnosis of CS in the US is probably lower than it should be due to rigid medical practices and old thinking. One common label applied to people with stomach complaints is Irritable Bowel Syndrome. Dr. Murray calls that an intellectual trash can if it is used too widely and if doctors forget about other possibilities, in that it is occasionally over-diagnosed. It really means, There is something wrong with your stomach, and we dont know what it is. The occurrence of stress-induced bowel dysfunction is a real entity.

In the US, CS is an exception to the rule concerning research efforts. It is considered to be a marginal disease. There is very little commercial interest in it. CS is definitely under-represented when compared to other diseases that get far more attention. Dr. Murray believes there are too many different national organizations that deal with CS. He believes these organizations need to unify and become one in order to advance the national agenda. He thinks local support groups such as our TCCSSG are doing a lot of good work; he considers belonging to a support group to be an essential part of the treatment of Celiac disease.

Dr. Murray recommends physicians associated with local support groups should read a book that thoroughly explains this disease. The book is Coeliac Disease, by Michael Marsh, Blackwell Scientific Publications, November 1992. It costs about $175, but is well worth the cost if it helps a physician become more interested and learn more about this disease.

Dr. Ivor Dennis Hill left the University of Baltimore and is now in North Carolina. He is the Chief of the Division of Pediatric Gastroenterology and Nutrition, Bowman Gray School of Medicine, Winston-Salem. His new phone number is (910) 716 4431. As such he will be very involved in all aspects of Clinical Pediatric Gastroenterology. Dr. Hill has every intention of continuing his work with celiac disease and sees this as an opportunity to open another center of interest. Colleagues at Duke and Chapel Hill are keen to join Dr. Hill in a Pediatric Gastroenterology Group.