What is celiac disease?
There is clear evidence of a family tendency toward celiac disease. 5-10% of the first-level relatives (parents, children, and celiacs) of diagnosed celiacs may develop celiac disease. The disease affects both sexes, and it can begin at any age, from infancy (as soon as cereal grains are introduced) to later life (even though the individual has consumed cereal grains all along).
The onset of the disease seems to require two components: genetic predisposition (two specific genetic markers, called HLA subfactors, are present in wellover 90% of all celiacs in America), and some kind of trigger. The trigger may be environmental (as in overexposure to wheat), situational (perhaps severe emotional stress), physical (such as a pregnancy, an operation), or pathological (a viral infection).
Once thought to be a childhood disease that would be outgrown, recent evidence indicates that it is not uncommon for the symptoms of celiac disease to disappear during late childhood or adolescence, giving the appearance of a cure. Unfortunately, damage still occurs during these years of apparent health, and later in life these celiacs may find they have suffered
considerable damage to the small intestine, and have for years deprived themselves of important nutrients.
Celiac disease (also called coeliac, nontropical sprue, celiac sprue, gluten intolerant enteropathy, or gluten sensitive enteropathy) is a condition in which there is a chronic reaction to certain protein chains, commonly referred to as glutens, found in some cereal grains. This reaction causes destruction of the villi in the small intestine, with resulting malabsorption of nutrients.
What is dermatitis herpetiformis?
While most individuals with DH do not have obvious GI symptoms,
almost all have some damage in their intestine. They have the
potential for all of the nutritional complications of celiac disease. It is believed by some GI professionals that most DH patients
do indeed have celiac disease.
It is unusual to develop DH after a celiac patient starts a
gluten-free diet. About 5% of celiac patients will develop DH,
either before being diagnosed or within the first year on the diet. The fact that DH can develop even after starting the diet is
probably due to the long lasting nature of the IgA deposits.
What does it have to do with celiac disease?
Dermatitis herpetiformis (DH) is a severely itchy skin condition that often starts abruptly, affecting the elbows, knees,
buttocks, scalp, and back. It usually starts as little bumps that can become tiny blisters and then are usually scratched off. DH
can occur in only one spot, but more often appears in several areas. The condition is related to IgA deposits under the skin.
These occur as a result of ingesting gluten. These deposits take a long time to clear up, even when the patient is on a gluten-
free diet.
What are the effects of celiac disease?
Celiacs who do not maintain a gluten-free diet also stand a much
greater chance of getting certain types of cancer, especially
intestinal lymphoma.
Untreated celiac disease can cause temporary lactose intolerance.
Lactose is a sugar found in dairy products. To be digested it must be broken down by an enzyme called lactase. Lactase is
produced on the tips of the villi in the small intestine. Since gluten damages the villi, it is common for untreated celiacs to
have problems with milk and milk products. (Yogurt and cheese are less problematic since the cultures in them break down
the lactose). A gluten-free diet will usually eliminate lactose intolerance. However, a number of adults (both celiacs and non-
celiacs) are lactose intolerant even with a healthy small intestine; in that case a gluten-free diet will not eliminate lactose
intolerance.
Celiacs often suffer from other food sensitivities. These may
respond to a gluten-free diet--or they may not. Soy and MSG are
examples of food products that many celiacs have trouble with.
However, it should be noted that these other sensitivities, while
troublesome, do not damage the villi. As far as we know, only gluten causes this damage.
Untreated celiac disease can be life-threatening. Celiacs are more likely to be afflicted with problems relating to
malabsorption, including osteoporosis, tooth enamel defects, central and peripheral nervous system disease, pancreatic
disease, internal hemorrhaging, organ disorders (gall bladder, liver, and spleen), and gynecological disorders (like amenorrhea
and spontaneous abortions). Fertility may also be affected. Some researchers are convinced that gluten intolerance, whether
or not it results in full-blown celiac disease, can impact mental functioning in some individuals and cause or aggravate autism,
Asperger's syndrome, attention deficit disorder (ADD), and schizophrenia. Some of the damage may be healed or partially
repaired after time on a gluten-free diet (for example, problems with infertility may be reversed).
How is celiac disease diagnosed?
Many doctors now feel that step number three is unnecessary, and some feel that even the second biopsy may be unnecessary. Part of the reason for this change in thinking is the development of three useful antibody blood tests: endomysial, reticulin
(IgA), and gliadin (IgG and IgA). If the patient has been eating gluten regularly and all three tests come back positive, there is a very high chance that the patient has celiac disease. If all three tests come back negative, then it is very likely that the patient
does not have celiac disease. Mixed results, which often occur, are inconclusive.
All of the laboratory tests that can be performed are strongly
affected by a gluten-free diet. Tests will return negatives if the individual has been on a gluten-free diet for some time, and there is much debate about the length of time a patient must return to a gluten-laden diet before being tested. It probably depends on many factors: the level of damage that was done before starting a gluten-free diet, the length of time the person has been gluten-free, the amount of healing that has occurred, and the sensitivity of the individual to gluten.
A tentative diagnosis of celiac sprue is usually offered if the
patient's symptoms clear up after some time on a gluten-free diet. This is often followed by a "challenge" in which one of the offending grains (usually wheat) is eaten to see if the symptoms reoccur. However, this approach is much less desirable than having a firm diagnosis from a combination of antibody tests and one or more biopsies.
Because a gluten-free diet precludes accurate testing, if you suspect celiac disease, it is advisable to have diagnostic tests performed before starting a gluten-free diet.
Some physicians will accept positive antibody tests, one biopsy, and improvement on a gluten-free diet as sufficient for diagnosing celiac disease. Many other doctors prefer to perform a second biopsy, feeling that if it shows normal villi after a period of eating gluten-free then the diagnosis is confirmed. There are still some doctors who prefer the three-step approach mentioned above, though most view this as unnecessary.
The traditional approach to diagnosing celiac disease is a three-step process:
What are the symptoms of celiac disease?
In between these two extremes lie a wide variety of symptoms that
include:
Reactions to ingestion of gluten can be immediate, or delayed for
weeks or even months.
The amazing thing about celiac disease is that no two individuals who have it seem to have the same set of symptoms or reactions. A person might have several of the symptoms listed above, a few of them, one, or none. There are even cases in which obesity turned out to be a symptom of celiac disease.
There is no typical celiac. Individuals range from having no symptoms (asymptomatic or "latent" forms of the disease) to extreme cases where patients present to their physicians with gas, bloating, diarrhea, and weight loss due to malabsorption.
Individuals have reported such varied symptoms as:
In children, the symptoms may include:
In addition to all of these, dermatitis herpetiformis, a disease in which severe rashes appear (often on the head, elbows, knees and buttocks) is related to celiac disease.
What is the treatment for celiac disease?
There is no prescriptive drug celiacs can take to effect a cure. In fact, there is no cure, though there is every opportunity for
celiacs to lead normal, healthy lives by following a diet that contains no gluten. This means avoiding all products derived
from wheat, rye, barley, oats, and a few other lesser-known grains.
Extra vitamins may be taken, if necessary, but the only way for a
celiac to avoid damage to their intestinal villi and the associated symptoms, is by maintaining a gluten-free diet.
What is gluten? What is gliadin?
There are two main groups of proteins in gluten, called the gliadins and the glutenins. Upon digestion, the gluten proteins break down into smaller units, called peptides (also, polypeptides or peptide chains) that are made up of strings of amino acids--almost like beads on a string. The parent proteins have polypeptide chains that include hundreds of amino acids. One particular peptide has been shown to be harmful to celiac patients when instilled directly into the small intestine of several patients. This peptide includes 19 amino acids strung together in a specific sequence. Although the likelihood that this particular peptide is harmful is strong, other peptides may be harmful, as well, including some derived from the glutenin fraction.
It is certain that there are polypeptide chains in rye and barley
proteins that are similar to the ones found in wheat. Oat proteins have similar, but slightly different polypeptide chains and may or may not be harmful to celiac patients. There is scientific evidence supporting both possibilities.
When celiac patients talk about "gluten-free" or a "gluten-free
diet," they are actually talking about food or a diet free of the
harmful peptides from wheat, rye, barley, and (possibly) oats. This means eliminating virtually all foods made from these grains (e. g., food starch when it is prepared from wheat, and malt when it comes from barley) regardless of whether these foods contain gluten in the very strict sense. Thus, "gluten-free" has become shorthand for "foods that don't harm celiacs."
In recent years, especially among non-celiacs, the term gluten has been stretched to include corn proteins (corn gluten) -- and there is a glutinous rice, although in the latter case, glutinous refers to the stickiness of the rice rather than to its containing gluten. As far as we know, neither corn nor glutinous rice cause any harm to celiacs.
Traditionally, gluten is defined as a cohesive, elastic protein that is left behind after starch is washed away from a wheat flour
dough. Only wheat is considered to have true gluten. Gluten is actually made up of many different proteins.
Which grains are safe, which are not?
Unfortunately, there are variants out there that go by other names. Durum and semolina are names for certain kinds of wheat that have been bred for specific uses. Both spelt and kamut are versions of wheat. (Other names for these: spelta, Polish wheat, einkorn and small spelt). Bulgur is wheat that's been specially processed. Triticale, a grain crossbred from wheat and rye, is definitely on the toxic list.
Though corn (maize) is one of those grains that many people -- not just celiacs -- may be allergic to, it is not a grain that is
thought to cause damage to the villi in celiacs. It is tolerated by most celiacs.
Of the common grains, rice is the favorite as it rarely troublesanyone.
Aside from corn and rice, there is a wide variety of other grainsthat are used in gluten-free cooking. We even use beans and peas(legumes, pulses).
The following can be milled into flour: amaranth*, buckwheat* (or
kasha), chickpeas (garbanzos), Job's tears (Hato Mugi, Juno's Tears, River Grain), lentils, millet*, peas, quinoa*, ragi, sorghum, soy, tapioca, teff*, and wild rice. Many of these flours are available in health food stores. Some (like rice flour) may be available in grocery stores. (The products marked with an * are listed as grains to avoid by some physicians and celiac societies. See the discussion below about anecdotal evidence and possible contamination of flours for more information.)
To improve the texture of gluten-free baked goods, most cooks use
one or more of the following: xanthan gum, guar gum (though
this sometimes has a laxative effect), methylcellulose, or a new
product called Clear Gel. These can be obtained either through
health food stores, specialty cook's stores, or some of the mail
order sources listed below.
Oils popular in cooking include: corn, peanut, olive, rapeseed
(canola), safflower, soy, and sunflower.
The common list of forbidden grains is: wheat, rye, barley and oats.
Gluten-free Questions and Answers continues...
What is Celiac Disease & DH