Frequently Asked Questions


Unless otherwise noted (*), the entire FAQ is Copyright Michael Jones, Bill Elkus, Jim Lyles, Lisa Lewis, Evan Hunt, 1995 - All rights reserved worldwide

** Files marked with (**) were prepared in cooperation with Vijay Kumar, M.D., Research Associate Professor at the University of Buffalo and President and Director of IMMCO Diagnostics, and Karoly Horvath, M.D., Ph.D., Associate Professor of Pediatrics; Director, Peds GI & Nutrition Laboratory; University of Maryland at Baltimore. Both run laboratories which provide services in the areas of autoimmunity, including tests for celiac disease.

Disclaimer

This FAQ has been designed to be a general information resource. It is not intended for use in diagnosis, treatment, or any other medical application. Questions should be directed to your personal physician. This is no warranty on this information and no liability is assumed by the author or any group for the recommendations, information, dietary suggestions, menus, and recipes promulgated. Products mentioned or omitted do not constitute endorsement.

This discussion list is international in scope. Keep in mind that products and procedures often differ between countries. In future updates, some of these differences may be highlighted.

The Celiac Listserv

I recommend that everyone with celiac disease subscribe to the following newsgroup at St Johns University, in New York.
To subscribe, send an e-mail to the following address LISTSERV@SJUVM.STJOHNS.EDU on the Internet: In the body of this e-mail, put SUB CELIAC followed by your first and last name. For example: SUB CELIAC John Doe.


FAQ Table of Contents


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What is celiac disease?

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.

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 well over 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.

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What is dermatitis herpetiformis? 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.

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.

For more information see the Dermatitis Herpetiformis page.

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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.

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How is celiac disease diagnosed?

The traditional approach to diagnosing celiac disease is a three-step process:

1) 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.

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.

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.

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What are the symptoms 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.

In between these two extremes lie a wide variety of symptoms that include:

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.

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.

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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.

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What is gluten? What is gliadin?

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.

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.

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Which grains are safe, which are not?

The common list of forbidden grains is: wheat, rye, barley and oats.

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 troubles anyone.

Aside from corn and rice, there is a wide variety of other grains that 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 anectodal 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.

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Is all this stuff certified to be safe?

No. Celiac sprue is not a well-researched disease. Most of what we know about foods that are safe and foods that are not is gathered from anecdotal evidence provided by celiacs themselves. There is a great deal of controversy about what affects celiacs and what doesn't.

Take, for example, buckwheat. Along with corn and rice, this is one of only three common grains left on the "safe" list for celiacs. However, some celiac societies have put it on the "unsafe" list and there is anecdotal evidence that some individuals react to it as they do to wheat. Yet a well-known specialist in grain research points out that buckwheat is more closely related to rhubarb than to the toxic grains, so if buckwheat is unsafe then any plant might be unsafe.

In considering anecdotal evidence for whether a food is safe or not, individuals must make their own choices, but each of us should clearly understand that anecdotal evidence is gathered from individuals with widely varied experience.

It could be that the "buckwheat flour" that a celiac reacted to was actually one of those mixes that combines buckwheat flour with wheat flour. Another possibility is that, since buckwheat and wheat are often grown in the same fields in alternating years, the "pure buckwheat flour" may have been contaminated from the start by wheat grains gathered at harvest. Yet another explanation might be that the buckwheat was milled in a run that was preceded by wheat or any of the other toxic grains, so the flour was contaminated at the mill. Finally, some individuals -- celiacs or not -- may have celiac-like reactions to buckwheat; they are allergic. Celiacs who are allergic to buckwheat may be easily fooled into believing they are having a gluten reaction. Or, it could be that some evolutionary trick has put a toxic peptide chain into buckwheat despite its distant relation to the other grains, but the odds against this happening are long.

As individual celiacs learn to live gluten-free, they must gauge their own reactions to foods, do lots of research, ask questions, and try to understand the many variables that may affect the ingredients in their food.

The following is a list of ingredients which some celiacs believe are harmful, others feel are safe:

Wheat starch is used in the some countries' GF diet because of the belief that it contains only a trace or no gluten and that good baked products cannot be made without it. In a laboratory, wheat starch purity can be easily controlled, but in most plants this is not always the case. Wheat starch is not considered safe for celiacs in these countries: United States, Canada, Italy.

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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.

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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.

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How long must gluten be taken for the serological tests to be meaningful?**

Vijay Kumar, M.D., Research Associate Professor at the University of Buffalo and President and Director of IMMCO Diagnostics: There is no simple answer to this question as the susceptibility of the patient to developing CD is dependent upon several factors. One factor is the amount of gluten intake. Another is the genetic makeup of the individual. However, we feel that several weeks of gluten intake, especially in doses of 2 gm gluten/day, should result in positive serology in patients with CD.

Karoly Horvath, M.D., Ph.D., Associate Professor of Pediatrics; Director, Peds GI & Nutrition Laboratory; University of Maryland at Baltimore: The result of serological tests depends on the diet. Generally, three to six months of a gluten-free diet may result in normal antibody levels in a new patient. A strict gluten-free diet for more than three months may result in inconclusive serological tests in patients, who have started a diet without any diagnostic test. In this case a gluten challenge should be introduced for a proper diagnosis.

Each patient has different sensitivity to gluten for reasons that are unclear. The period of gluten challenge and the amount of gluten necessary to provoke serological immune response are individually different.

A 0.3 g/kg body weight/day of single gluten challenge causes immunological changes (cellular immunity) in the intestine (J Pediatr Gastroenterol Nutr 1989; 9:176-180) in patients on a gluten-free diet, however, the serological response is much slower.

Our recommendation is to ingest at least 0.3 g/kg/day of gluten for two months prior to the serological tests. However, if somebody experiences symptoms during the gluten challenge we recommend to perform serological tests earlier.

The protein content of wheat flour is between 7-15% and approximately 90% of the protein content is gluten. That means a slice of bread may have 2-3 g of gluten.

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What is the probability of false positive and false negative results from the serological tests?**

Vijay Kumar, M.D., Research Associate Professor at the University of Buffalo and President and Director of IMMCO Diagnostics: The three serological tests that are used for diagnosing CD are:

Each of these three tests provide a certain degree of reliability for diagnosing CD. Of these, endomysial antibody is the most specific test. The following table is taken from our studies (Lerner, Kumar, Iancu, Immunological diagnosis of childhood coeliac disease: comparison between antigliadin, antireticulin and antiendomysial antibodies).

% of Sensitivity% of SpecificityPredictive Value % PosPredictive Value % Neg
EMA97%98%97%98%
ARA65%100%100%72%
IgG AGA88%92%88%92%
IgA AGA52%94%87%74%

The following definitions related to sensitivity, specificity, positive and negative predictive values may help:

Karoly Horvath, M.D., Ph.D., Associate Professor of Pediatrics; Director, Peds GI & Nutrition Laboratory; University of Maryland at Baltimore: The summary below shows the results of the main serological tests based on several publications including 388 patients with CD, and 771 healthy subjects.

SENSITIVITY- the proportion of subjects with the disease who have a positive test. It indicates how good a test is at identifying the diseased:

Percentage of - IgA AGA Percentage of - IgG AGA Percentage of - IgA EMA
Average78%79%97%
Range46-100%57-94%89-100%



SPECIFICITY- the proportion of subjects without the disease who have a negative test. It indicates how good a test is at identifying the non-diseased:

Percentage of - IgA AGA Percentage of - IgG AGA Percentage of - IgA EMA
Average92%84%98.5%
Range84-100%52-98%97-100%



POSITIVE PREDICTIVE VALUE- the probability that a person with positive results actually has the disease:

Percentage of - IgA AGA Percentage of - IgG AGA Percentage of - IgA EMA
Average72%57%92%
Range45-100%42-76%91-94%



NEGATIVE PREDICTIVE VALUE- the probability that a person with negative results does not have the disease:

Percentage of - IgA AGA Percentage of - IgG AGA Percentage of - IgA EMA
Average94%94%100%
Range89-100%83-99%100%



References:

McMillan SA, Haughton DJ, Biggart JD, Edgar JD, Porter KG, McNeill TA. Predictive value for coeliac disease of antibodies to gliadin, endomysium, and jejunum in patients attending for jejunal biopsy. Brit Med J 1991;303:1163-1165

Ferreira M, Lloyd Davies S, Butler M, Scott D, Clark M, Kumar P. Endomysial antibody: is it the best screening test for coeliac disease? Gut 1992;33:1633-1637.

Khoshoo V, Bhan MK, Puri S, Jain R, Jayashree S, Bhatnagar S, Kumar R, Stintzing G. Serum antigliadin antibody profile in childhood protracted diarrhea due to coeliac disease and other causes in a developing country. Scand J Gastroenterol 1989;24:1212-1216.

Chan KN, Phillips AD, Mirakian R, Walker-Smith JA. Endomysial antibody screening in children. J Pediatr Gastroenterol Nutr 1994;18:316-320.

Bode S, Weile B, Krasilnikoff PA, Gdmand-Hyer E. The diagnostic value of the gliadin antibody testing celiac disease in children: a prospective study. J Pediatr Gastroenterol Nutr 1993;17:260-264.

Calabuig M, Torregosa R, Polo P, Tom s C, Alvarez V, Garcia-Vila A, Brines J, Vilar P, Farr C, Varea V. Serological markers and celiac disease: a new diagnostic approach ? J Pediatr Gastroenterol Nutr 1990;10:435-442.

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One case I know of had elevated gliadins (both types) but normal EMA and ARA, plus an inconclusive biopsy. Do you see this often?**

Vijay Kumar, M.D., Research Associate Professor at the University of Buffalo and President and Director of IMMCO Diagnostics: If the tests are performed using well standardized tests with known positive and negative predictive values then you can make the statement that if the serological tests are negative CD can virtually be ruled out. The problem is that some of these assays, especially the gliadin, can give you false positive results. In our laboratory we rarely see positive AGA results in the absence of EMA and ARA antibodies.

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Are there any unique factors to be considered for children? (I've heard that the serology has a lower predictive value for children under age two, since IgA may be depressed, or with anyone who has a condition which depresses IgA.)**

Vijay Kumar, M.D., Research Associate Professor at the University of Buffalo and President and Director of IMMCO Diagnostics: Not really. It is not true that the serological methods have lower predictive value in children less than two years of age. In all the studies that we did, there was 100% correlation of the EMA to the disease activity irrespective of the age.

Karoly Horvath, M.D., Ph.D., Associate Professor of Pediatrics; Director, Peds GI & Nutrition Laboratory; University of Maryland at Baltimore: There are age dependent changes in several blood parameters during childhood. It is well known that immunoglobulin levels depend on the age of children. E.g. the IgA class immunoglobulins reach the adult level only by 16 years of age, and the blood level of IgA immunoglobulins is only 1/5th of adult value below two years of age. A large study from Europe (Brgin-Wollf et al. Arch Dis Child 1991;66:941-947) showed that the endomysium antibody test is less specific and sensitive in children below two years of age. They found that the sensitivity of the EmA test decreased from 98% to 88% in children younger than 2 years of age. It means that 12% of their patients with celiac disease, who were younger than two years of age, did not have an increase in their endomysium antibody levels.

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How important is it for a confirmed celiac to have repeat biopsies or serology when on a gluten free diet?**

Vijay Kumar, M.D., Research Associate Professor at the University of Buffalo and President and Director of IMMCO Diagnostics: It is important for the serum tests to be negative in patients with CD. These tests provide strong indicators that the gluten free diet followed is effective and is free of gluten. Sometimes drugs or other intakes may be contaminated with gluten that may continue sensitization and the disease process which may be subclinically. We and others believe once the diagnosis of CD is confirmed and the patient is on a gluten free diet, repeat tests once in 3-6 months may be sufficient.

Karoly Horvath, M.D., Ph.D., Associate Professor of Pediatrics; Director, Peds GI & Nutrition Laboratory; University of Maryland at Baltimore: If a patient has histologically (endoscopy) and serologically (antibody tests) proved celiac disease, and his/her symptoms disappeared on a gluten-free diet, a repeat biopsy is not necessary. The serological tests are useful tools for estimating the effectiveness of the diet after 3-6 months on a gluten-free diet. The disappearance of antibodies from the blood takes months, if there was not any accidental gluten challenge (dietary mistake).

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There are different practices amongst GI's on repeat biopsies vs. serology, and on gluten challenges. My son's g/i, for example, took the position that since my son's symptoms stopped on a GF diet, and his previously sky-high EMA and ARA went back to normal, that it was unnecessary to do either a repeat biopsy or a gluten challenge. From the celiac list correspondence, I now see that my GI is rather liberal.**

Vijay Kumar, M.D., Research Associate Professor at the University of Buffalo and President and Director of IMMCO Diagnostics: I think your son's GI is doing the right thing. That is, if the EMA, ARA are normal (<1:2.5) and he is on a gluten free diet then there is no need to perform biopsy studies. The previous studies relating the EMA to biopsy studies tend to confirm this impression.

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Should my child have general anesthesia or conscious sedation prior to the biopsy?**

Karoly Horvath, M.D., Ph.D., Associate Professor of Pediatrics; Director, Peds GI & Nutrition Laboratory; University of Maryland at Baltimore: The biopsy is a small piece of tissue, such as from the inside lining of the intestine, that has been removed to look for diseases. The biopsy itself is not painful, because there are no pain-sensitive nerves inside the small intestine. An intestinal biopsy can be done in either of two ways depending on the age of the children and the tradition of the institution. Sometimes a blind biopsy procedure is performed by a biopsy capsule. This is thin flexible tube with a capsule at the tip, which has a hole and a tiny knife inside the capsule. This capsule is introduced into the intestine under fluoroscopy (X-ray) control. Alternatively, with an endoscopy the doctor can see inside the digestive tract without using an x-ray to obtain biopsies. The biopsy specimens are processed and viewed under the microscope to identify or exclude celiac disease. An important basic rule is that the biopsy should be performed safely. For a safe procedure children (and adults) should be sedated. There are two methods of sedation: unconscious (general anesthesia) and conscious sedation. During both kinds of sedation the vital parameters (heart rate, blood pressure, oxygen saturation) of patients are continuously monitored. The method of choice depends on the child.

Conscious sedation is performed with two different intravenous medications. One of them is a sedative medication (e.g. Versed), which causes amnesia in 80-90% of children, and even older children do not recall the procedure. The second medication is a pain-killer type medication (e.g. Fentanyl), which further reduces the discomfort associated with the procedure. In addition, the throat is sprayed with a local anesthetic in older children, which makes the throat numb and prevents retching at the introduction of the endoscope.

During general anesthesia the anesthesiologist uses sleep-gases (e.g. halothan) and intravenous medications and then places a tube into the trachea. Children are completely unconscious. This is a safer way to perform endoscopy, because the patients are fully relaxed and their airway is protected. However, the anesthesia itself has certain complications.

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Should I just test endomysial antibodies or also do gliadin/reticulin?**

Karoly Horvath, M.D., Ph.D., Associate Professor of Pediatrics; Director, Peds GI & Nutrition Laboratory; University of Maryland at Baltimore: Serological tests are performed at the time of diagnosis of celiac disease and they are repeated later to estimate the efficacy of the gluten-free diet.

It is recommended to perform a full serological test-panel in patients with suspected celiac disease. These tests measure antibodies belonging to both the IgA and IgG classes of immunoglobulins. The incidence of selective IgA deficiency is much higher in celiac patients than in the general population. In patients with selective IgA deficiency only the IgG antigliadin antibody may be present, however, this antibody is less specific. It means that the IgG-type antigliadin antibody may be present in otherwise normal individuals.

If somebody had a positive endomysial antibody test at the time of diagnosis he/she may choose to use only this antibody test to monitor the effect of the diet. There are individual differences in the disappearance of serum antibodies.

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Is it important to use experienced laboratories for reliable test results?**

Vijay Kumar, M.D., Research Associate Professor at the University of Buffalo and President and Director of IMMCO Diagnostics: Absolutely yes. For the test to provide meaningful results, it must be validated using a large number of clinical documented subjects. In addition, the two tests, endomysial and reticulin are immunofluorescent tests where the readings are subjective. Experienced laboratory personnel are needed to read such tests.

Karoly Horvath, M.D., Ph.D., Associate Professor of Pediatrics; Director, Peds GI & Nutrition Laboratory; University of Maryland at Baltimore: There are several advantages to use a laboratory experienced with the celiac serological tests:

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How can I convince my doctor to do these tests, and do them at an experienced lab?**

Vijay Kumar, M.D., Research Associate Professor at the University of Buffalo and President and Director of IMMCO Diagnostics: Convincing the doctor initially depends upon the patient. However, the laboratory to which the test is sent should be available to answer questions the doctor may have. Our laboratory always encourages such questions.

Karoly Horvath, M.D., Ph.D., Associate Professor of Pediatrics; Director, Peds GI & Nutrition Laboratory; University of Maryland at Baltimore: Lot of physicians in the USA did not get appropriate training to recognize the protean manifestations of celiac disease. However, if the classical symptoms are present--chronic diarrhea, weight loss, protuberant abdomen, foul-smelling stools, etc.--it is absolutely indicated to test the patients serum for antigliadin and antiendomysium antibodies.

Professionals participating in this discussion group are educating physicians on an almost daily basis. Generally, it is useful to supply the physician with a review article or a textbook chapter describing the values of serological tests and protean manifestations of celiac disease. If that does not help, you can ask the help of professionals participating in the Cel-Pro list. They have helped several patients by calling physicians and convincing them about the necessity of serological testing.

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Where can I get reliable laboratory tests done, including blood tests?*

The following labs have excellent reputations for such tests:

Specialty Labs
2211 Michigan Ave.
Santa Monica California 90404
Tel: 310 828-6543 or 800 421-4449

The University of Maryland at Baltimore
School of Medicine
Division of Pediatric Gastroenterology and Nutrition
410 706-1997 or fax at 410 706-0020

University of Iowa Foundation for Celiac Disease Research
University of Iowa Hospitals and Clinics
200 Hawkins Drive
Iowa City, IA 52242

IMMCO Diagnostics, Inc.
Buffalo, NY
716 876-5672
800 537-TEST
E-mail: IMMTEST@AOL.COM

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How often must a negative test be repeated in suspect individuals? (This question has two aspects: for an individual with existing symptoms, and for a sibling of a known celiac.)**

Vijay Kumar, M.D., Research Associate Professor at the University of Buffalo and President and Director of IMMCO Diagnostics: If the test is negative and there is a strong suspicion of CD, it must be repeated after several weeks (3-4 weeks), especially after a high gluten intake. We did a study of two cases with DH who were serologically negative. However, a gluten challenge 1g/Kg body wt/day resulted in positive serology; the results became normal on a gluten free diet.

If you are a relative of a CD patient and are on a regular diet and the serology performed by an experienced laboratory is negative then there may not be any need for retesting until and unless clinically justified.

Karoly Horvath, M.D., Ph.D., Associate Professor of Pediatrics; Director, Peds GI & Nutrition Laboratory; University of Maryland at Baltimore: There is no rule for it. If a family member with previous negative tests experiences any gastrointestinal symptoms associated with CD, he/she should undergo serological testing as soon as possible. It is well known that up to 15% of the family members of a patient with celiac disease may have the asymptomatic (latent or silent) form of celiac disease, although they have positive serological tests and have the pathological changes in the upper part of the small intestine. It is also evident that there are at least three developmental stages of mucosal lesions (Marsh MN. Gastroenterology 1992;102:330-354) and celiac disease may manifest at each period of life. That is why we recommend a repeat test every 2-3 years in first degree relatives of celiac patients.

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Suppose the biopsy or serum tests are inconclusive. What do you do?**

Vijay Kumar, M.D., Research Associate Professor at the University of Buffalo and President and Director of IMMCO Diagnostics: The biopsy may be inconclusive. Serum, if tested for gliadin, endomysial and reticulin antibodies, should provide unequivocal information. Ours and other studies have provided a strong reliability of the serum tests.

Karoly Horvath, M.D., Ph.D., Associate Professor of Pediatrics; Director, Peds GI & Nutrition Laboratory; University of Maryland at Baltimore: The biopsy may be inconclusive in a small percentage of patients with so-called patchy lesions in the duodenum. It means that there are histologically normal looking spots with finger like villi and pathologic spots showing flattened mucosa in the upper half of the duodenum. If CD is suspected, the gastroenterologist should obtain several biopsies from different spots of the whole duodenum. Most of the endoscopists routinely examine only the upper half of the duodenum (duodenal bulb and the descending part). The transverse segment of the duodenum is not viewed routinely. Few endoscopic centers have an enteroscope, which is a longer and more flexible endoscope for examining the entire duodenum and jejunum. The enteroscopy allows you to obtain biopsies even from the jejunum. The histological examination of a single biopsy specimen may increases the risk of false negative diagnosis.

The experience of the pathologist in the interpretation of small intestinal histology is important. In centers specializing in celiac disease the gastroenterologist routinely reviews the histologic slides together with the pathologist. There is still a possibility of inconclusive results if multiple biopsies are obtained and the histological interpretation is appropriate. All disease has a developmental process. It means that it takes time for the pathological changes to be evident. There are cases when the symptoms suggest CD, however, the histology is not conclusive. This problem occurs in only a few cases. A repeated biopsy may be necessary after a period of higher gluten intake. However, if the antiendomysium antibody test is positive and the histology is not conclusive a gluten-free diet is recommended.

The serology test may be inconclusive if:

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How can I determine the amount of gluten from the weight of the wheat in food?

For 100 units of whole grain wheat, about 70 units of white flour results from the milling process. The rest is separately sold as wheat bran or wheat germ. Those 70 units of flour are about 10%- 15% protein, thus about 7 to 10 units of protein for 100 units of whole wheat. The protein is about 80% gluten, thus about 6 to 8 units of gluten for 100 units of whole wheat. Since one typically sees wheat flour as an ingredient, appying the 70% factor implies 8 to 12 units of gluten per 100 units of wheat flour.

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Sometimes I see references to the amount of prolamin or gliadin instead of gluten.

To cereal scientists, gluten is the same as prolamin, but in some older terminology only the gliadin fraction is termed prolamin. Gliadin makes up about half of the gluten. The other half is often called glutenin, but it is very similar to the gliadin half in composition and structure and I suspect that it is toxic to a large extent. It would be simplest to say that gluten equals gliadin equals prolamin as far as toxicity is concerned.

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How is wheat starch made? Why is some starch said to be more toxic than others?

Most of the wheat grain and of white flour is made up of starch granules. Starch granules make up about 75% of grain or of white flour. In the processes used to make wheat starch, a small amount of the gluten protein (actually mostly the gliadin fraction, but not entirely), sticks to the surface of the starch granules. The amount depends on the washing method, how many times the granules are washed, and factors like that. Wheat starch can be made very low in surface protein and it is only the surface protein that is of concern (there are some internal granule proteins, but we are pretty sure that they are not gluten proteins).

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How much gluten is in wheat germ and wheat bran?

I don't know how much gluten they contain, but my feeling is that it is likely to be more than you would find in wheat starch and so best avoided by celiac patients.

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What is the difference between celiac disease and gluten intolerance?*

The following was posted by Kemp Randolph on the Celiac Listserv news group krand@pipeline.com:

The difference is that between two immune related reactions, allergy and intolerance. I asked the question of the technical difference between the two some time ago and got no response. It's not based on overt symptoms, that's for sure. We're also not talking about the difference between latent celiac disease and overt weight-loss, apple belly CD. You can be allergic and intolerant of the same substance or food In the case of milk, it's lactose(milk carbohydrate) intolerance and milk protein allergy.

My non-professional stab at the difference between intolerance and allergy then. Both can lead to intestinal damage. There's a table in Marsh's book showing that --page 155 , figure 6.13. Type 3 damage ("flat destuctive" ) can occur from milk, soya, egg.... as well as celiac disease.

The reaction to an intolerance seems to be that the substance is not digested. The immune part of the response involves only the circulating immunoglobins IgA, maybe IgG and related immune cells, receptors.

The immune reaction to an allergy involves IgE. The substance may still be digested, but there may be allergic responses elsewhere outside the gut.

Apple belly CD is an intolerance. The problems elsewhere in the body, except for cancer, are related to nutritional deficiencies. The link to other autoimmune diseases is statistical genetics when two (or more) genes for each of two conditions are close together.

For more information see the Allergy vs. Intolerance page.

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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.

For more information on lactose intolerance see the Lactose Intolerance section of the Research Data On Celiac Disease, Gluten Intolerance and Lactose Intolerance page. Return to the FAQ Table of Contents


How accurate are blood-antibody tests?*

There are two classes of antibodies seen in untreated celiac disease. Antibodies directed against a fragment of gluten called gliadin, and antibodies directed against a particular tissue in the body itself. The two main areas in the body which can be attacked by its own antibodies are the aendomysial (the covering of muscle), and the reticulin ( the framework for kidney and liver), but there are others.

To conduct the test, 5ccs of blood is drawn from the patient, and the blood cells are removed. The gliadin test is usually an automated machine-read test, which means there is little room for interpretor error. However, currently in the USA there is no standard methods for conducting the test, or normal ranges for the results. The endomysial tests are more dependent on the experience and ability of a pathologist who looks at a pattern of staining produced by the patients serum on a slice of monkey esophagus. While this test is done in similar way in most labs, there are many differences in how the results are interpreted.

How good are these tests?

If all of the blood test results are positive a celiac disease diagnosis is 90% accurate. However, there are several circumstances in which the tests can be inaccurate. IGA and IGG are two different varieties of antibodies which are produced by most people's immune systems. There is a different blood test for each of the antibodies. Of the two tests, the IGA gliadin and IGA endomysial tests are the most accurate. However, this test can become negative relatively quickly after going on a gluten-free diet (3-6 months), which can cause a false negative test result. The IGG is less specific, and can sometimes be positive in non-celiacs. Also, about 4% of celiacs have no IgA at all! For these reasons it is very important that both tests are done for an accurate diagnosis. The biopsy is still considered the "standard candle" to confirm a blood diagnosis, and give a 100% sure diagnosis.

For all tests for celiac disease it is necessary that one is on a gluten-containing diet, or false-negative test results could be given. Blood tests may also be useful in following up a known celiac and confirm that the diet is indeed free of large amounts of gluten. Also, because of the lack of standardization, keep in mind that blood test results may not be directly comparable from one lab to the next.

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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.

References: Gluten Intolerance Group of North America newsletter, V. 13, Issue 2, 1987; New York Times, Sept. 13, 1994, genetics study by Dr. John Todd at Oxford, summarized by Kemp Randolph.

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What is tropical sprue?*

Tropical sprue is a disease which causes a food absorption problem, especially with fat. The high risk places for catching tropical sprue are Southeast Asia and South America, and it is not normally found in Africa. The cause is not fully understood, but may be due to a viral infection, and/or from dietary factors. The symptoms are diarrhea (pale large stools), a sore tongue, loss of appetite, and weight loss. In the latter stages of the disease, a patient may develop ostemalacia (softening of the bones), peripheral neutitis, edematous swelling of the extremities, and megaloblasitic anemia. The standard treatment for tropical sprue is folic acid and cyanocobalamin. If diarrhea continues a cycle of tetracycline can be given. Anemia can be corrected by intracenous transfusions if necessary, and iron can be administered if there are any signs of iron-deficiency anemia in addition to megaloblastic anemia. Tropical sprue must be distinguished from gluten sensitivity. It is said that the damage form tropical sprue does not get as severe as that of celiac disease, but it may be very hard to distinguish the two. Arasitic infestations also need to be considered in people who have problems upon returning from underdeveloped areas.

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Can products which contain gluten but only touch the skin affect celiacs?*

Very few celiacs are likely to have any reaction to topical gluten contact. In order for a gut reaction to occur, it is likely that direct contact with the gut lumen is required. Many people with celiac disease have everyday contact with gluten (for instance, bakers with CD who have contact everyday with wheat flour), and do not have any reaction to it. However, there are, on rare occasion, people who have had an anaphylactoid response to gluten, and these people should avoid gluten in all forms. Also, topical gluten breathed into the upper airways may cause symptoms of allergic rhetinitis in rare instances. If there is a simple alternative to a shampoo, cosmetic, etc., you may want to use the non gluten containing product.

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Where can I get an accurate blood test done for CD/gluten intolerance?*

IMMCO Diagnostics serves the entire US and is located in Buffalo, NY. Their phone number is 800-537-TEST. IMMCO sends specimen collection kits free of charge to doctors, clinics, etc. nationwide. When the sample is taken, the doctor places it in the appropriate tube, seals it, and returns it either by business reply mail or FedEx. Results are generated within 24 hours of receipt. Each collection kit includes a Test Request Form which lists the entire catalog of tests and a Fee Schedule.

IMMCO was established in 1971. The staff prides itself on depth of knowledge and expertise in this field. Most of the tests have been established on the basis of original research, and IMMCO continues to invest a great deal of its resources in R&D. President, Dr. Vijay Kumar, is one of the foremost experts in autoimmunity.

Kevin Lawson can supply more information about the company. They have newsletters and technical information available for interested parties, and, of course, are eager to supply interested doctors with collection kits. You can contact him at: IMMTEST@AOL.COM IMMCO Diagnostics, Inc., Specializing in Autoimmune Disease Diagnosis.

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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 300. For more information regarding statistical research on celiac disease, see the Research Data On Celiac Disease and Gluten Intolerance page.

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How much gluten is in a normal diet, and how much does it take to cause damage in a celiac?*

The average gluten-containing diet contains roughly 10-40 grams of gluten per day. This figure is based on the amounts of gluten in your average slice of whole wheat bread, which contains around 4.8 grams of gluten (10% gluten by weight), and the amount of gluten in a serving of pasta, which is roughly 6.4 grams of gluten (11% gluten by weight). The smallest amount of gluten which has been shown by a biopsy to cause damage to a celiac is 0.1 gram per day (Catassi et al.). This is approximately the amount of gluten contained in 1/48th of a slice of bread! The biopsies in this study showed an increase in intraepithelial lymphocyte count, one of the earliest signs of damage. The challenge was on 10 patients (children) for 28 days each. Four of the patients showed an increase in IgA antigliadin antibodies. The intestinal permeability test remained normal.

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