Introduction To Celiac Disease

Dermatitis Herpetiformis, Wheat Allergy, Gluten Intolerant Enteropathy, Celiac Sprue Disease

What is celiac disease?
Celiac disease, also called celiac sprue, and officially known as "gluten intolerant enteropathy" is a genetic autoimmune disorder. "Genetic" means that a gene carries the trait, and the trait can be passed down from one family member to another. "Autoimmune" describes the way that the disease does damage; "auto" here means "to oneself" so it's saying that the immune system of a celiac mistakenly does damage to the celiac rather than to the supposed invader. What happens is that the immune system believes that a portion of the food eaten needs to be attacked, and as a side-effect of the attack, the lining of the small intestine gets damaged. It appears as though the gene for celiac disease may ride on the same gene as diabetes, and like diabetes, you can carry the gene but not have the disease. It takes some "triggering event" to start up the process (little is known about this mechanism, but suspected "events" include physical or emotional stress, pregnancy, over-exposure to wheat, other diseases, and even antibiotics); and, of course, the celiac must be exposed to wheat in the first place.
What is dermatitis herpetiformis?
Dermatitis herpetiformis (DH) is another form of celiac disease. Anyone who has DH is a celiac. In this form of the disease, lesions that look like a herpes sore ("formis" means "in the form of" and "herpeti" refers to the similarity to herpes) appear on the skin, usually in very symmetrical ways: on both hands, both arms, head, elbows, knees, buttocks, etc. They are often extremely itchy. (Please note that the name of this disease is a misnomer -- it really has nothing to do with herpes.)
How is a "wheat allergy" different from "celiac disease"?
A common garden-variety "wheat allergy" happens when your body sees wheat as an invader and attacks it -- not your body. Symptoms of wheat allergy could be eczema (different from dermatitis herpetiformis), sneezing, increased acne, or if you have a very serious allergy to wheat, you might have an anaphylactic reaction in which your throat would swell up to the point where you could no longer breath. These are not symptoms typical of celiac disease. The main effect of celiac disease is damage to the small intestine; if you have symptoms that are caused by damage to the small intestine (e.g. flattened villi as seen in a biopsy, or any form of malnutrition that is caused by the damaged villi) then what you have is not a wheat allergy, but celiac disease. In my years dealing with wheat-free diets, I have seen very few people with a simple "wheat allergy" and lots with celiac disease, so I suspect celiac disease is more common than wheat allergies. If you have problems with wheat, you should visit with a gastroenterologist and get tested for celiac disease.
Is there a cure for celiac disease or dermatitis herpetiformis?
At this time there is no cure, and no hope for one any time soon. Once the disease has been triggered there is no way to turn it back off, though in the far future there might be hope for gene therapies or other mechanisms which could work; none of these are likely in the near future. However, while there is no actual cure, a gluten-free diet solves most of the problems associated with the disease.
What is a gluten-free diet?
"Gluten-free" is another slight misnomer, since it's probable that "gluten" isn't the problem, and it certainly isn't the whole problem, however this term has come to represent the celiac diet and so we define what we eat -- or what we don't eat -- by this term. The gluten-free diet just means strict avoidance of wheat, rye, barley (and, currently, oats), even in tiny amounts. This is more easily said than done, but once one becomes familiar with the diet it becomes fairly routine. Please visit A Gluten-Free Living Primer for more information on the ins and outs of the diet.
What are the symptoms of celiac disease?
Celiac disease is known as "The Great Mimic" because patients who ultimately end up diagnosed with the disease come to the doctor's office with such a wide variety of symptoms that it can be very hard to diagnose. What this means is that there is no typical set of symptoms. There is a "classic" set of symptoms (diarrhea, thinness, malnutrition, pot belly) that is associated with the disease, but "classic" is not the same as "typical." People with celiac disease who are not following the gluten-free diet may have just one symptom (maybe just anemia, or feeling run down, or behavioral problems) or they may have several. That said, here is a list of possible symptoms:

SHORT TERM SYMPTOMS

LONG TERM SYMPTOMS

What are the effects of celiac disease?
Celiacs who are not following a gluten-free diet will, first of all, suffer from damage to the lining of their small intestines (specifically, to the "villi" -- the little hair-like growth that helps process food in the small intestine). This damage slows and even prevents the digestion of of food, which can lead to malnutrition (anemia, osteoporosis, vitamin deficiencies, and more). Over the long term, the constant damage to the small intestine can cause enough wear to lead to intestinal cancers. In the short run, many annoying symptoms can also make life downright uncomfortable. (See also "Short Term Symptoms" and "Long Term Symptoms" above.) Following a gluten-free diet reduces the risk of cancer down to that of the general population, and will improve digestion enough to sustain the body normally, as well as getting rid of the usual short-term side-effects.
What tests can be done to diagnose celiac disease?
The "gold standard" test for celiac disease involves three biopsies (one before going on a gluten-free diet, showing damage to the villi; one during a gluten-free diet, showing healed villi; one after going back to eating gluten, again showing damage), but many knowledgeable physicians now accept one biopsy, an antibody blood test, and improvement of symptoms while on a gluten-free diet (the biopsy showing damage to the villi prior to a gluten-free diet; the antibody test showing elevated antibodies to gluten while still eating a gluten-filled diet). A less formal diagnostic process would just involve the blood tests, and improvement on a gluten-free diet. It should be noted that the blood tests look for elevated IgA antibodies as an immune response to gluten, but a fair percentage of people with celiac disease are IgA deficient, and so their tests would give a false negative. There is another test now being manufactured (Tissue Transglutaminase Testing or tTG) which looks at IgG antibodies, instead of IgA antibodies, that is proving very reliable for diagnosing celiac disease.
How long have we known about celiac disease?
Although the disease itself has been around for quite some time -- it gets the name of "sprue" from the similarity of symptoms to "tropical sprue" which is an older known disease -- the cause of the disease was not recognized until the middle of this century, when war-time limited supplies of wheat to local populations, and a physician noticed after the war, that several of his "sprue" patients who had improved during the war, were now ill again. It was not long before he realized that wheat was the culprit. From that point, continued investigation added rye, barley, and oats to the list of grains that made celiac sprue patients sick. Still, for quite a while it was thought of as a childhood disease that would be outgrown, so it was not that long ago that the medical community recognized that adults suffered from the disease as well (see the question above on symptoms for more details). Until very recently, it was thought of as a "rare" disease in the United States, and most medical practitioners are still unaware of the growing evidence that celiac disease is actually quite common.

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Copyright 1999 Linda Blanchard All Rights Reserved Worldwide. Date Added: November 14, 1999, 1998. Last Update: November 14, 1999.