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.

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

The University of Maryland at Baltimore
Attention: Karoly Horvath, MD, or Athba Hammed, Research Assistant
School of Medicine
Division of Pediatric Gastroenterology and Nutrition Laboratory
UMAB/Bressler Research Building, Room 10-047
655 West Baltimore Street
Baltimore, MD, 21201
410 706-1997 or fax at 410 328-1072

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

IMMCO Diagnostics, Inc.
Vijay Kumar, Ph.D.
IMMCO Diagnostics 
60 Pineview Drive 
W. Amherst, NY 14228
Tel: (716) 691-0091 
Toll Free Tel: (800) 537-TEST
E-mail: Open Original Shared Link

Immunopathology Laboratory
Dept. of Pathology
5233 RCP
University of Iowa Hospitals and Clinics
200 Hawkins Drive
Iowa City, IA 52242
Tel: (319) 356-2688

Mayo Clinic
Dr. Joeseph Murray
Internet: Open Original Shared Link

Prometheus, Inc.
5739 Pacific Center Boulevard
San Diego, California 92121
Tel: (619) 824-0895
Toll Free (888) 423-5227
Fax: (619) 824-0896

If you are a relative of a celiac disease 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 celiac disease, 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.

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 celiac disease 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 celiac disease, 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:

• The sample handling and shipping is inappropriate; e.g. the serum was shipped at room temperature for days
• The patient has IgA deficiency, which occurs in one out of 600 people in the general population and much more frequently in patients with celiac disease. In these cases the antigliadin IgA and the antiendomysium IgA tests give negative results. If the tests are performed in a laboratory specialized in celiac serological tests, the laboratory recommends a test for immunoglobulins. If a patient has IgA deficiency and positive antigliadin IgG test, he/she should undergo further absorptive tests and/or an intestinal biopsy.

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).

For more information on Codex wheat starch visit the Open Original Shared Link page.

The following was posted by Kemp Randolph on the Celiac Listserv news group Open Original Shared Link:

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. Its not based on overt symptoms, thats for sure. Were also not talking about the difference between latent celiac disease and overt weight-loss, apple belly celiac disease. You can be allergic and intolerant of the same substance or food In the case of milk, its 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. Theres a table in Marshs book showing that --page 155 , figure 6.13. Type 3 damage (flat destructive ) can occur from milk, soy, 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 celiac disease 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 Open Original Shared Link page.

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 Is 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.

For more information see our Open Original Shared Link page.

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.

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 celiac disease 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.

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: Open Original Shared Link IMMCO Diagnostics, Inc., Specializing in Autoimmune Disease Diagnosis.