Celiac disease (CD) is a permanent intolerance to gluten, a protein found in various wheats (e.g., durum, kamut, spelt), rye, barley and triticale. Gluten consumption causes damage to the absorptive surface of the small intestine and can result in malnutrition, anemia, nutritional deficiencies and an increased risk of other autoimmune diseases and some cancers of the gut.
Dermatitis herpetiformis (DH) is celiac disease of the skin, and is characterized by blistering, intensely itchy skin. The rash has a symmetrical distribution and is most frequently found on elbows, knees, buttocks, back of the neck, scalp and upper back. People with dermatitis herpetiformis can have gastrointestinal damage without obvious symptoms.
Genetics
Celiac disease is an inherited condition. First degree relatives (parents, brothers, sisters and children) of individuals with celiac disease are at the highest risk of having unrecognized celiac disease (5-15%). It can appear at any time in the life of a person with a hereditary predisposition to it. Environmental factors such as emotional stress, pregnancy, surgery, or an infection (e.g., travellers diarrhea, pneumonia) can sometimes trigger the onset of symptoms.
Prevalence
Recent research has revealed that celiac disease affects 1:100-200 people in the United States (1.2). Growing awareness of celiac disease, earlier diagnosis and improved blood screening point to the likelihood of similar prevalence figures in Canada.
Symptoms
The number and severity of symptoms associated with untreated celiac disease can vary greatly from person to person. In some cases, undiagnosed adults with celiac disease have only iron deficiency anemia without digestive or intestinal symptoms. The similarity of the symptoms of celiac disease to those of other conditions often leads to a misdiagnosis of irritable bowel syndrome, lactose intolerance, chronic fatigue syndrome or diverticulosis, thus delaying the diagnosis of celiac disease. The presence of obesity does not exclude the diagnosis of celiac disease.
THE FOLLOWING SYMPTOMS MAY OCCUR INDIVIDUALLY OR IN COMBINATION IN CHILDREN OR ADULTS
INDIGESTION AND NAUSEA
ABDOMINAL BLOATING, PAIN, CRAMPING OR GAS
LACTOSE INTOLERANCE
ANEMIA – IRON, FOLATE OR B 12 DEFICIENCY
EXTREME WEAKNESS AND FATIGUE
MIGRAINE
BONE/JOINT PAIN
SWELLING OF ANKLES AND HANDS
RECURRING/PERSISTENT DIARRHEA
CONSTIPATION
WEIGHT LOSS
DEFICIENCY OF VITAMINS A, D, E, K
MOUTH ULCERS / CANKER SORES
DEPRESSION
MENSTRUAL IRREGULARITIES
INFERTILITY / MISCARRIAGES
ADDITIONAL SYMPTOMS IN CHILDREN
delayed growth
irritabilty and behavioural changes
vomiting
delayed puberty
dental enamel abnormalities
ASSOCIATED CONDITIONS
Celiac disease often occurs with other diseases. If you have any of the following conditions, consider having your blood tested for celiac disease.
family history of celiac disease
type 1 diabetes
autoimmune hepatitis
Lymphoma
infertility
osteoporosis
Down syndrome
Turner syndrome
unexplained liver enzyme elevations
Diagnosis
Recent Canadian and U.S. studies report significant delays in diagnosis (3,4). Excellent blood tests to detect endomysial (EMA) and tissue transglutaminase (tTG) antibodies are now available to screen for celiac disease in people with mild or atypical symptoms and those in high risk groups. Such tests may suggest that a person has celiac disease, but they do not replace the need for an intestinal biopsy. Small intestinal biopsies are the ONLY definitive means of diagnosing celiac disease. A GLUTEN~FREE DIET SHOULD NOT BE STARTED BEFORE THE BLOOD TESTS AND BIOPSIES ARE DONE, since it can interfere with making an accurate diagnosis.
Treatment
THE ONLY TREATMENT FOR CELIAC DISEASE IS A STRICT GLUTEN-FREE DIET FOR LIFE
A strict gluten-free diet will enable recovery of the gut, and may reduce the risk of developing other associated diseases and complications. Because of the complexity of the gluten-free diet, patients should be referred to a registered dietitian with expertise in celiac disease for nutrition assessment, education and follow-up. Regular follow-up with your physician is also recommended. All persons with celiac disease are encouraged to join the Canadian Celiac Association and their local chapter for valuable practical information and on going support.
The safety of oats in celiac disease has been extensively investigated. Clinical studies have shown that small amounts of pure, uncontaminated oats are safe for most adults and children with celiac disease. The availability of pure oats remains a problem. Most commercially available oats are contaminated with wheat or barley. However, individuals with celiac disease must ensure that the oats they are eating are free from gluten contamination.
For more information on celiac disease and the gluten-free diet, contact the Canadian Celiac Association or go to the CCA website.
What is Dermatitis Herpetiformis ?
Dermatitis herpetiformis is celiac disease of the skin. Dermatitis herpetiformis accompanies celiac disease of the small intestine. Celiac disease is a permanent intolerance to gluten, a protein found in various wheats (e.g., durum, kamut, spelt), rye, barley and triticale. Gluten consumption causes damage to the absorptive surface of the small intestine and can result in malnutrition, anemia, nutritional deficiencies, and an increased risk of other diseases including osteoporosis and specific cancers of the gut.
The skin rash of dermatitis herpetiformis is intensely burning and itchy. The earliest findings are groups of small blisters (2-5 mm) which soon erupt into small erosions, either spontaneously or from being scratched. The elbows, knees and buttocks are most often involved in symmetrical fashion. The back of the neck, upper back, scalp, hairline and face are less frequently involved (1). The blisters resemble those of herpes simplex herpetiformis, but there is no relationship to herpes viruses.
Dermatitis herpetiformis and celiac disease are inherited and related autoimmune disorders that share the same genetic pathways and chromosome features. Both respond to gluten withdrawal from the diet.
Prevalence
Dermatitis herpetiformis occurs in 10% of patients with celiac disease that itself affects 1 in 100-200 Canadians. Onset of dermatitis herpetiformis is usually early to middle adult life but can occur in children and later in life.
Diagnosis
Dermatitis herpetiformis is only diagnosed and confirmed by a dermatologist obtaining a slight skin biopsy from uninvolved skin adjacent to blisters or erosions (1, 3). Other forms of dermatitis can mimic dermatitis herpetiformis necessitating skin biopsy for correct diagnosis (4)
Small bowel biopsies will confirm a diagnosis of coexisting celiac disease but are not essential if the skin biopsy confirms the diagnosis of dermatitis herpetiformis (5). Referral to a gastroenterologist may be necessary for assessing the extent of the underlying intestinal injury and associated deficiencies of iron, calcium and vitamins.
The skin symptoms usually predominate over intestinal symptoms (1, 3). Blood tests for celiac disease may be negative, reflecting the absence or paucity of intestinal symptoms expected when there is milder, more patchy villous atrophy seen on small bowel biopsies (2)
Treatment
Dapsone is necessary for the immediate treatment of the dermatitis by providing rapid relief from the burning and itching. Ongoing treatment with dapsone may be necessary to maintain remission. Flare- ups brought on by inadvertent or intentional gluten ingestion will require additional courses of dapsone (6). A life-long gluten-free diet is required to reduce the risk of associated conditions and to decrease or eliminate the need for dapsone (6). The gluten-free diet is complex so that patients should be referred to a registered dietitian with expertise in celiac disease for nutrition assessment, education and follow-up. All people with dermatitis herpetiformis are encouraged to join the local chapter of the Canadian Celiac Association for valuable practical information and ongoing support.
For more information on dermatitis herpetiformis and the gluten-free diet, contact the Canadian Celiac Association or go to the CCA website www.celiac.ca
Go Gluten FREE…
This is a brief introduction to the gluten-free diet (GFD) to help you get started on your journey to better health. See a registered dietitian for detailed dietary information, needs assessment and education.
The gluten-free diet is a diet for life and should never be started before a small intestinal biopsy is positive for celiac disease.
Gluten Defined
Gluten is a general name for specific proteins in certain grains, The gluten in wheat, rye, and barley cause a toxic reaction in people with celiac disease preventing the absorption of essential nutrients.
Gluten-Containing Foods and Ingredients
· Barley
· Bulgar
· Couscous
· Durum
· Einkorn*
· Emmer*
· Farro*
· Kamut*
· Malt**
· Malt Extract**
· Malt
· Flavouring**
· Malt Syrup**
· Malt Vinegar**
· Oat Bran***
· Oats***
· Rye
· Semolina
· Spelt (Dinkel)*
· Triticale
· Wheat
· Wheat Bran
· Wheat Germ
· Wheat Starch
* Types of Wheat
** Derived from barley
*** Oats do not contain gluten, however commercial oat products can be crossed contaminated with wheat and / or barley therefore, oats are not recommended by the CCA at this time.
Hidden Sources of Gluten
Beer, Ale and Lager
Breading and stuffing
Broth and Soup Bases
Communion Wafers
Croutons
Hydrolyzed Vegetable Proteins
Imitation Bacon and Seafood
Modified Food Starch
Pasta
Sausages, Hot Dogs, Deli Meats
Sauces and Seasoning
Soy Sauce
Reading Labels
The key to a successful GFD is reading food labels. Remember to check the ingredient list every time you shop since food companies often change ingredients in their products.
Remember: IF IN DOUBT, LEAVE IT OUT
Beware of foods labeled “Wheat-free” as they may contain grains such as barley, rye, spelt or kamut that are not gluten-free.
Foot Notes:
*Types of wheat
**Derived from barley
***Small amounts of pure, uncontaminated oats are safe for those with celiac disease, however the availability of pure oats remains a problem. Most commercially available oats are contaminated with wheat or barley.
Your key to Better Health
Foods to Enjoy
Many foods are naturally gluten-free Breads, Baked Products, Cereals and Pasta made from gluten-free grains and flours such as amaranth, arrowroot, buckwheat, corn, flax, legume flours (bean, garbanzo, lentil, pea), millet, potato flour, potato starch, quinoa, rice flours (white, brown, sweet), sorghum flour, soy flour, tapioca and teff.
Meats and Alternatives
Plain meat, fish, poultry, eggs, legumes, nuts and nut butters, seeds and tofu.
Fruits and Vegetables
Fresh, frozen, canned fruits and vegetables including potatoes and corn.