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Celiac.com 02/12/2007 - Before they are diagnosed, people with celiac disease often find themselves in an unenviable position. They may go out of their way to eat a wholesome, balanced diet including plenty of fruits and vegetables, a good variety of whole-grain foods, and a modest amount of meat and dairy, yet still find themselves suffering a whole range of bothersome stomach and digestive complaints including indigestion, gas, stomach cramps and diarrhea, alternating with constipation. 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.

Collagenous Sprue is a distinctive lesion of the intestinal mucosa associated with progressive malabsorption. The intestinal pathology is initially identified with the characteristic flat lesion of untreated Celiac Sprue. Thereafter, bands of eosinophilic hyaline material within the lamina propria become increasingly apparent. As the disease progresses, the mucosa becomes progressively thinner. Therapy, including the gluten-free diet, does not help. Some cases currently designated refractory or unclassified Sprue many prove to be Collagenous Sprue.

Celiac.com 03/19/2002 - The following excerpts were taken from The New England Journal of Medicines January 17, 2002 (Vol. 346, No. 30) article on recovery from celiac disease: In addition to a gluten-free diet, all patients with newly diagnosed celiac sprue who have clinically evident malabsorption should initially receive a multi-vitamin preparation and appropriate supplements to correct any iron or folate deficiency. Patients with steatorrhea, hypocalcemia, or osteopenic bone disease should receive oral calcium and vitamin D supplementation. Approximately 70 percent of patients have symptomatic improvement within two weeks after starting a gluten-free diet. The speed and eventual degree of histologic improvement are unpredictable but invariably lag behind the clinical response and may not be evident on repeated biopsy for two to three months. Although a return to normal histologic findings is common in children, half of adults have only a partial resolution on biopsy. If a patient has no response to the diet, the most common cause is incomplete adherence. Persistent symptoms may be caused by coexisting disorders such as irritable bowel syndrome, lactose intolerance, microscopic colitis, or pancreatic insufficiency. In one study strict adherence to a gluten-free diet reduced the risk of all disease-associated cancers including enteropathy-associated T-cell lymphoma. Thus, it seems prudent to recommend lifelong strict adherence to a gluten-free diet in all patients with celiac sprue. Regarding untreated celiac sprue: Dairy products should be avoided initially because patients with untreated celiac sprue often have secondary lactase deficiency. After three to six months of treatment, diary products can be reintroduced if the patient has no ill effects.

In volume 334, number 13 of the New England Journal of Medicine was published a follow-up article concerning additional research which seems to contradict their October 19, 1995 (Vol. 333, No. 16) article which stated that pure oats are safe for celiacs. David Branski, M.D., Margot Shine, M.D., and Shaare Zedek Medical Center, Jerusalem 91031, Israel report their belief that allowing oats in the diet is premature. They sited the short duration of the study and the increased risk of cancer related through small intake of gluten (Holmes et al). It does appear that the initial study is being continued for an additional five years.

New England Journal of Medicine October 19, 1995 -- Volume 333, Number 16 Celiac.com 10/25/1995 - According to an article published for the week of October 19, 1995 (Vol. 333, No. 16) in the New England Journal of Medicine, it is not a problem for celiacs to eat oats (non-contaminated, of course!). The article is based on a study conducted in Finland by a group of doctors who did very rigorous testing on adult celiacs and concluded that oats can, and should be included on the celiac diet (The lead doctor for the study is also a celiac). The following is a summary of the study: 52 celiacs in remission (on a gluten-free diet for more than a year) were given duodenal-biopsies, and then fed an average of 49.9 grams of oats per day for six months. They were again given biopsies, and none of the subjects were found to have any villi damage. There was also a group of 40 newly diagnosed celiacs who underwent the same procedures, except they were studied for 12 months rather than 6. The initial biopsies with this group showed significant villi damage due to the fact that they were still on a gluten-containing diet until they began the study. This group was fed an average of 46.6 grams of oats per day, and were given biopsies at 26 and 52 weeks. Their biopsies were almost normal at 26 weeks, which means their damaged villi were able to heal while eating oats daily. At the end of the year their biopsies showed no damage to their villi. The study DID NOT test people who had severe cases of celiac disease, and therefore cannot make recommendations with regard to them. Also, three people with dermatitis herpetiformis withdrew from the study because of an increase of itching, but none of them showed any signs of dermatitis. One person withdrew because of abdominal symptoms, but they did not exhibit damaged villi. Their conclusion: Our data suggest that most patients with celiac disease, whether in remission or newly diagnosed, can add moderate amounts of oats to their otherwise gluten-free diets without any harmful subjective side effects or laboratory abnormalities. Furthermore, among the newly diagnosed patients the improvement of mucosal architecture and the disappearance of mononuclear-cell infiltration were similar, regardless of the use of oats. -NEJM There is also an editorial from England which cites positive research which has been done there regarding oats. The NEJM is the Bible of medical research, with extensive peer reviews before publication.