Celiac Disease Information Guide

(Gluten Sensitive Enteropathy)

Celiac disease is a chronic disease in which there is a characteristic though not specific mucosal lesion of the small intestine that impairs nutrient absorption by involved bowel and prompt improvement of nutrient absorption and improvement of the characteristic intestinal mucosal lesion on withdrawal of wheat gliadin (the toxic alcohol-soluble gluten fractions) and the equivalent barley, rye, and oat prolamins from the diet. (i)

  1. Introduction
  2. Symptoms
  3. Blood Sample Screening
  4. Diagnosis
  5. Treatment
  6. The Diet
  7. Potential Long-Term Problems for Celiacs
  8. Support Groups
  9. Cooking Techniques
  10. Footnotes

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In the United States, estimates of this disorder are not available. (ii) It can be called celiac sprue, gluten sensitive enteropathy, coeliac disease, or celiac disease. Previously it was considered a children disease, while the similar disorder in adults was called non tropical sprue.

For celiac disease to be active, the celiac must have the genetic potential to develop the disorder, there must be a source of gliadin in the diet, and there must have been a trigger factor. Exploring the genetic background, celiac disease may not be found, but disorders that are related to celiac disease through the immune system may be found. The associated diseases include a skin disorder, Dermatitis Herpetiformis; Insulin Dependent Diabetes Mellitus (type I); Systemic Lupus Erythematosus; Sjogren's Syndrome; Scleroderma, Grave's Disease; Addison Disease; Myasthenia Gravis; Autoimmune Chronic Active Hepatitis; and Erythematosus. (iii)

It is an inherited disorder. Information available suggests that 8 to 12% of first degree relatives (children, siblings, parents) have the potential to develop celiac disease. (iv) Relatives should be educated about the potential for developing celiac disease.

The onset of the disease has no age or sex restriction. Medical cases are available showing celiac disease developing in infants after the introduction of grains and in mature adults who consumed grains for many years.

Various trigger factors have been reported. Some appear to have celiac disease triggered by the trauma of surgery. Women often develop symptoms after delivering a baby. Some celiacs report having a virus infection, which never recovers. The 'virus infection' continues for weeks until it is diagnosis as celiac disease. Severe psychological stress has also been reported as a trigger factor. Divorce, death of a loved one, or loss of a job can occur in proximity to the onset of the disorder. (v)

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Although symptoms vary widely, the most common manifestations are chronic iron-deficiency anemia, which is not corrected by iron therapy, chronic fatigue, and weakness. Persistent iron deficiency anemia may be the only symptom with which a celiac may present. (vi)

Weight loss may be reported and a history of low body weight despite excessive caloric intake. In young women with undiagnosed celiac disease, this combination is often mistaken as an 'eating behavior disorder' (bulimia or anorexia nervosa).

The degree of intestinal involvement and complaints varies from diarrhea, excessive gas, and abdominal pain to constipation or alternating constipation and diarrhea. (vii) Frequently, the variability of these symptoms leads to a misdiagnosis of 'irritable bowel syndrome'.

Other signs and symptoms of malabsorption may be present depending on the degree of damage to the small intestinal mucosa. Additionally, other organ systems are known to be affected. Liver enzyme values have been shown to be elevated in 47% of a series of 132 persons with celiac disease. (viii) Many studies have reported decreased spleen size (hyposplenism) in adults with celiac disease. (ix,x,xi) Gall bladder contraction is also impaired in many untreated celiac adults. Mechanisms which may be responsible for abnormal gall bladder contractions may also be operative in decreased pancreatic enzyme secretion. (xii) Untreated children with celiac disease have also been shown to have pancreatic deficiency. (xiii)

Untreated women with celiac disease may have obstetric and gynecological problems. Amenorrhea and spontaneous abortions are reported more often for untreated women than for controls. Infertility was shown to be more common among untreated celiac women. Fertility and ability to carry an infant to term, returned when the women followed a gluten-free diet. (xiv)

Dental abnormalities, specifically permanent-tooth enamel defects, have been shown to be associated with celiac disease in both adults (xv) and children. (xvi) They have also been found in first degree relatives of celiac disease patients. (xvii)

Behavioral changes, such as irritability and inability to concentrate, may be reported in undiagnosed children. Adults often relate difficulties in short- term memory and concentration. Many adults report that these problems persist, despite strict, long-term dietary adherence.

Loss of calcium and the resulting decrease in bone density may be observed in the untreated celiac. Bone pain or a tendency to fracture bones without regard to age can become a critical problem.

Celiac disease has been called the 'great mimic' because so many symptoms could be caused by other disorders. In addition, the symptoms can vary from person to person.

A common problem for the undiagnosed celiac is lactose intolerance. Lactose is the sugar in diary products. It must be broken down by an enzyme, lactase, before it can be absorbed. This enzyme is produced on the tips of the villi which line the small intestine. When the villi are destroyed, as in celiac disease, lactose from diary products is not absorbed normally. When lactose reaches the colon, bacteria 'eat' the lactose and produce acid and gas. Water rushes into the intestine to dilute the lactose. The result is watery, acid diarrhea, bloating, and excessive gas.

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Blood Sample Screening

The recent development of blood tests for the detection and screening of celiacs and their relatives have produced a useful aid to diagnosis and monitoring. The tests have a clinical utility in:

    Screening at-risk populations to identify biopsy candidates

    Providing information to support a diagnosis of GSE

    Monitoring adherence to a gluten-free diet (xviii)

The blood samples required for the tests can be taken at a medical facility and shipped to a lab for processing. Laboratories that performs the serological tests are:

    IMMCO Diagnostics, 963 Kenmore Avenue, Buffalo, NY 14223 716-876-5672, 1-800-537-TEST (8378), email: IMMTEST@aol.com
    Immunopathology Laboratory, Dept. of Pathology, 5233 RCP, University of Iowa Hospitals and Clinics, 200 Hawkins Drive, Iowa City, IA 52242, phone (319/356-2688/8470)
    Pediatric Gastroenterology & Nutrition Laboratory, UMAB/Bressler Research Building, Room 10-047, 655 West Baltimore Street, Baltimore, MD 21201, Attention: Karoly Horvath, MD or Athba Hammed, Research Assistance phone (410) 706-1997 or Fax (410) 328-1072
    Specialty Laboratories, 2211 Michigan Avenue, Santa Monica, CA 90404, phone (800) 421-7110
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Laboratory values indicating nutrient malabsorption, such as decreased serum carotene, folate, cholesterol, calcium, albumin, and magnesium may aid in the diagnosis. Differential sugar absorption tests may point to generalized malabsorption. (xix)

The diagnosis is confirmed by:

    1. A small intestinal biopsy consistent with diagnosis of celiac disease.

    2. Clinical response to the gluten-restricted, gliadin-free diet.

An indepth discussion of the diagnosis process is available in the file DIAG-TST.    

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Damage to the small intestine in those with celiac disease can usually be repaired. Ravages of malabsorption of nutrients which are seen in other body organs can also be reversed. The enzyme for breaking down lactase may return and lactose intolerance may no longer be a problem. Infertility and behavioral problems may also be reversed. This occurs when all wheat, rye, oats, barley and their derivatives are eliminated from the diet. The treatment is effective, safe, and has no side effects.

If lactose intolerance is present, decrease the amount of lactose in the diet for the first few months. This can be accomplished by eliminating the high lactose containing diary products in the celiac's diet, such as milk.

It is not uncommon for persons with celiac disease to have additional food sensitivities. If a celiac is still having intestinal symptoms after eliminating ALL wheat, oats, barley, and rye from the diet and lactose intolerance is not the problem, there may be additional food sensitivities, transient or permanent. (xx) A frequent food sensitivity problem could be soy. (xxi)

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The Diet

Get the most up-to-date and accurate information on the requirements of the gluten-restricted, gliadin-free diet. Use the resources of a doctor, a dietitian, and a celiac support group to ease the transition. In a few days the villi will return to normal, the body will absorb nutrients, and general health will return.

The celiac must read every label from food to medicine, before it is consumed. This must be repeated for every purchase, as product ingredients routinely change. Items with nebulous terms must be omitted until the actual ingredients are found to be gluten-restricted, gliadin-free. Labeling laws do not require the referencing of ingredients which are added because of processing or packing. Products which are 'dusted' or acquire 'contamination' from airborne grain dust must be avoided.

This is a diet for life. Initially, the changes to your lifestyle may appear to be impossible. The diet is extremely difficult for the new celiac because of the lack of a one hundred per cent accurate guideline that can be used when purchasing foods and medicines. As many celiacs will attest, you learn to adapt and life can be very enjoyable.

The celiac will become acquainted with mail-order sources of gluten- restricted, gliadin-free products. Some of the excellent specialty vendors from our complete International list for the new US celiac are:

Dietary Specialties       Ener-G Foods                 Miss Roben's
PO Box 227                PO Box 84487                 PO Box 1434
Rochester, NY. 14601      Seattle, WA. 98124           Frederick, MD 21702
(800) 544-0099            (800) 331-5222               (800) 891-0083
The Gluten-Free Pantry    The Really Great Food Co.
PO Box 881                PO Box 319
Glastonbury, CT 06033     Malverne, NY. 11565
(203) 633-3826            (516) 593-5587
Additional vendors names are available from Celiac LISTSERVE(R) in the file VENDORS.    

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Potential Long-Term Problems for Celiacs

Decreased bone density (osteoporosis and osteomalacia) is a serious problem for celiacs. Adequate bone density is dependent upon many things. One essential ingredient for strong bones is adequate calcium. If calcium is not absorbed, due to small intestinal damage caused by untreated celiac disease, bones are not as dense. As aging progresses, bone is lost at a predictable rate. Unfortunately, for those beginning the process with less than optimal bone mass, the 'fracture threshold' is reached at a much younger age.

Celiacs have a 78% greater occurrence of cancers and lymphomas of the mouth, bowel, and esophagus, the risk can be reduced after 5 years of strict adherence to a gluten free diet. (xxii)

A celiac's immunology is prone to many more allergies, secondary reactions and subsequent diseases including chronic hepatitis, arthritis, thyroid disorders, vision problems and eye disorders, dental problems, ulcers, or cancers on oral mucus membranes.

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Support Groups

Celiac support groups complement the information available from the medical profession. A goal of the support group is education and the distribution of information about the disease. For additional information, contact one of these groups.

For additional information on a local or national group, refer to the documents GROUPSXX on the Celiac LISTSERV or these WEB pages:

    Celiac Support Groups in the United States
    Celiac Support Groups in Canada
    Celiac Support Groups in Australia
    Celiac Support Groups in Finland
    Celiac Support Groups in Italy
    Celiac Support Groups in other countries

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Cooking Techniques

Most celiacs will change from modern cooking methods to more traditional techniques. Many libraries have comprehensive books or the library's Inter- Library Loan Program can ease your transition to these 'old' cooking techniques. A cookbook that should be owned by every celiac is Bette Hagman's, _The Gluten-Free Gourmet_, _More From The Gluten-Free Gourmet_, and _The Gluten-Free Gourmet Cooks Fast and Healthy_.

A comprehensive listing of cookbooks is available in the Listserve's file COOKBOOK  

The use of alternate flours will enable the celiac to enjoy bread, pastas, and desserts as before diagnosis. Some of the flours are: white and brown rice, tapioca, soy, potato, potato starch, and corn. Better results can be obtained through the use of a blend of these flours. Xanthan gum and guar gum are useful to prevent the normal tendency for baked rice flour items to fall apart. Red Star Yeast operates a hotline for celiac bread machine questions. The phone number is (800) 4-CELIAC.

A bread machine is a simple way for celiacs to obtain fresh bread with a minimum of preparation or difficulty. The selection of recipes available for these machines will fill your desire for any type of bread. Prior to purchase, check with a local support group for their recommendation on brands and where to buy a machine. Some machines are better than others and the design of a few machines preclude the use of alternate flours.

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i Trier, Jerry S., Celiac Sprue, The New England Journal of Medicine, Dec. 12, 1991, pg. 1709.

ii Ibid. pg. 1709.

iii GIG, Celiac Sprue: Patient Resource and Information Guide, GIG, Undated, pg. 1.

iv Trier, pg. 1710.

v GIG, Celiac Sprue: Patient Resource and Information Guide, pg. 1.

vi Depla, A., Bartelsman, J., Mulder, C., Tytgat: Anemia Monosymptomatic Celiac Disease. Hepato-gastroenterol 37:90, 1990.

vii Pare, P., Douville, P., Caron, D., Lagace, R: Adult celiac sprue: Changes in the pattern of clinical recognition. J Clin Gastroenterol 10 (No. 4):395, 1988.

viii Jacobsen, M. Fausa, O., Elgjo, K., Schrumpf, E.,: Hepatic Lesion in Adult Coeliac Disease. Scand J Gastroenterol 25:656, 1990.

ix Robinson, P., Bullen, A., Hall, R., Brown, R., Baxter, P., Losowsky, D., Losowsky, M.: Splenic Size and Function in Adult Coeliac Disease. Scand J Gastroenterol 25:656, 1990.

x Trewby, P., Chipping, P., Palmer, S., Roberts, P. Lewis, S., Stewart, J.: Splenic Atrophy in Adults Coeliac Disease: Is it Reversible? Gut 22:628, 1981.

xi Bullen, A., Hall, R., Gowland, G., Rajah, S., Losowsky, M.: Hyposplenism, adult coeliac disease, and autoimmunity. Gut 21:28, 1980.

xii Brown, A., Bradshaw, M., Richardson, R., Wheeler, J., Harvey, R.: Pathogensis of the impaired gall bladder contraction of coeliac disease. Gut 28:1426, 1987.

xiii Carroccio, A., Iacono, G., Montalto, G., Cavataio, F., Dimarco, C., Balsamo, V., Notarbartolo, A.: Exocrine Pancreatic Function in Children with Coeliac Disease before and after a Gluten Free Diet. Gut 32:796, 1991.

xiv Molteni, N., Bardella, M., Bianchi, P.: Obstetric and Gynecological Problems in Women with Untreated Celiac Sprue. J Clin Gastroenterol 12(1):37, 1990.

xv Aine, L., Dental Enamel Defects and Dental Maturity in Children and Adolescents with Coeliac Disease. Proc Finn Dental Soc 82 (suppl 3):1, 1986.

xvi Aine, L., Maki, M., Collin, P., Keyrilainen, O., Dental Enamel Defects in Coeliac Disease. J Oral Pathol Med 19:241, 1990.

xvii Maki, M., Aine, L., Lipsanen, V., Koskimies, S.: Dental Enamel Defects in First-Degree Relatives of Coeliac Disease Patients. Lancet 337:763, 1991.

xviii "Gluten Sensitivity, The Changing Clinical Perspective", Specialty Labs, 1991, pg. 1

xix Juby, L., Rothwell, J., Axon, A.,: Lactulose/mannitol test: an ideal screen for celiac disease. Gasteroenterol 96:79, 1989.

xx O'Grady, J., Stevens, F., Keane, R., Cryan, E., Egan-Mitchell, B., McNicholl, B., McCarthy, C., Fottrell, P: Intestinal lactase, sucrase, and alkaline phosphatase in 373 patients with coeliac disease. J Clin Pathol 37:298, 1984.

xxi Haeney, MR, Goodwin, BJ, Barratt, ME, Mike, N, Asquith, P: Soya protein antibodies in man: their occurrence and possible relevance in coeliac disease. J Clin Pathol 35:319, 1982.

xxii Celiac Disease Foundation. Winter 1992, Issue #5, p. 2.

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Copyright 1995 - 1999 by Michael Jones, Bill Elkus, Jim Lyles, and Lisa Lewis 1995, 1996 - All rights reserved worldwide.

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This fact sheet has been designed to be a general information resource. However, it is not intended for use in diagnosis, treatment, or any other medical application. Questions should be directed to your personal physician. This information is not warranted and no liability is assumed by the author or any group for the recommendations, information, dietary suggestions, menus, and recipes promulgated. Based upon accepted practices in supplying the source documents, this fact sheet is accurate and complete. Products mentioned or omitted do not constitute endorsement.

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