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Frequently Asked Questions

What are the effects of celiac disease?

How is celiac disease diagnosed?

What is the treatment for celiac disease?

Which alcoholic beverages are safe?

Are there other diseases related to celiac disease?

How is lactose intolerance related to celiac disease?

Is there a connection between celiac disease and diabetes?

How common is celiac disease?


What are the effects of celiac disease?

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).

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. Back to top

How is celiac disease diagnosed?

The traditional approach to diagnosing celiac disease is a three-step process:
  • Perform a biopsy of the lining of the small intestine. This is a surprisingly easy procedure which takes only a few minutes, although small children are usually sedated first, which adds to the cost and complexity of the biopsy. If the villi are damaged (flattened or atrophied mucosa), go to step 2.
  • Place the patient on a gluten-free diet for six months or longer and then perform another biopsy. If the villi are healed, go to step 3.
  • Put gluten back in the diet for six months or longer, and then perform a third biopsy. If the villi are again damaged, then the diagnosis is complete. At this point, the patient goes on a gluten-free diet for life.

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.  Back to top

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. Back to top

Which alcoholic beverages are safe?

Wine, rum, tequila, and sake are usually safe as their alcohols do not generally come from toxic grains. Some vodkas are also okay. However, as with any other ingested product, you should gauge your reaction and learn as much about your favored brands as possible. Grain alcohols are one of those controversial items. While the distillation process should leave no room for glutens to wind up in the end product, many celiacs do report problems with ingestion. (One theory is that some of the original "mash" may be added back in at the end of the process for flavor. This is worth researching with the manufacturer of your favorite product.)

Many liquors are made with grain alcohol and so may be suspect. Whiskey, bourbon, gin and rye are definitely off the list, since they are made with rye and barley. Beer, too, must be avoided, since malt (usually from barley) is an ingredient. Even rice beers use malt. Back to top

Are there other diseases related to celiac disease?

Among celiacs and their relatives, there appears to be a higher incidence of other disorders related to the immune system. A partial listing of these includes insulin dependent diabetes mellitus (type I), Graves' disease, Addison's disease, scleroderma, chronic active hepatitis, myasthenia gravis, systemic lupus erythematosus, and Sjogren's syndrome.

In addition, a gluten-free diet appears to have helped some individuals with autism, chronic fatigue syndrome (myalgic encephalomyelitis or ME, PVS, post viral fatigue syndrome or PVFS), attention deficit disorder (ADD), and ADHD; though it is by no means a cure for any of these. Back to top

How is lactose intolerance related to celiac disease?

Lactose intolerance is frequently a side effect of celiac disease. Celiacs who eat gluten become lactose intolerant after the villi and microvilli in their small intestine become damaged, and are no longer capable of catching and breaking down the lactose molecule. The problem usually disappears when celiacs remove gluten from their diet, which allows the damaged villi and microvilli to grow back. Lactose intolerance symptoms can continue for a long time after a celiac has gone on a 100% gluten-free diet. In some cases the villi and microvilli damage can take up to two years to heal completely, but in most cases it takes between six months and a year. Most people who are lactose intolerant can usually eat goat and sheep (feta) cheeses without any problems. Back to top

How common is celiac disease?

The incidence of celiac disease in the general population can vary from country to country, but could be as high as 1 in 150. For more information regarding statistical research on celiac disease, see the Research Data On Celiac Disease and Gluten Intolerance page. Back to top

 

Is there a connection between celiac disease and diabetes?

Of the many immune related disorders linked with the celiac condition, the best established connection is with Type I diabetes (mellitus). Type I diabetes occurs at a rate of about 0.5% in the general population, but at a rate estimated at 5-10% among celiacs. Normally the diabetes is diagnosed first, both because this form of diabetes tends to strike early in life and its diagnosis is certain. No connection has been found with the more common form of diabetes (mellitus= honey , from the sugar laden urine when uncontrolled), Type II which occurs at a rate of 2-2.5% in the general population.

Like celiac disease, Type I diabetes is more common in those of northern European extraction. Like celiac disease, it is highly linked to the so-called HLA markers of the immune system, those marking white blood cells. Celiacs are likely to be positive for both HLA-B8 and HLA-DR3; Type I's are most linked to HLA-B8 and either HLA-DR3 or HLA-DR4. An English study about 6 months ago found that multiple genes were linked to Type I reflecting the fact that parents of a Type I are often diabetes free: the interpretation being that genes were required from both sides. The recent request for celiac siblings for a study of genetic typing intends to duplicate that one looking for celiac genes.  Back to top

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