Gluten Intolerance Group of Long Island
PO Box 374, Levittown, New York 11756-0374

Phone: 631-553-9161

GIG of LI Articles - Resources

Celiac Disease

What is celiac disease?
Celiac disease is a disorder that causes problems in your intestines when you eat gluten, which is in wheat, rye, barley and some oats (from contamination).  Gluten is like a poison to people with celiac disease, because it damages their intestines.

What does gluten do to people with celiac disease?
Gluten damages the intestines.  This damage keeps your body from taking in many of the nutrients in the food you eat.  This includes vitamins, calcium, protein, carbohydrates, fats and other important nutrients.  Your body can't work well without these nutrients.

How did I get celiac disease?
Celiac disease runs in the family.  You inherited the tendency to get this disease from your parents.  If one member of your family has celiac disease, about 1 out of 10 other members of your family are likely to have it.  You may have this tendency for a while without getting sick.  Then something like severe stress, physical injury, infection, childbirth or surgery can "turn on" your celiac disease.  In a recent study by Dr. Alessio Fasano, celiac disease affects 1 in about 133 people in the United States.  Many (estimates of 97%) are still undiagnosed, but having problems, or misdiagnosed with irritable bowel, colitis, Crohn’s etc.

What happens to people with celiac disease?

Celiac disease can cause different problems at different times:
  • An infant with celiac disease may have abdominal pain, diarrhea and may fail to grow or gain weight.
  • A young child may have abdominal pain with nausea and lack of appetite, anemia (not enough iron in the blood), mouth sores and allergic dermatitis (skin rash).
  • A child could be irritable, fretful, emotionally withdrawn or excessively dependent.
  • In later stages, a child may become malnourished, with or without vomiting and diarrhea.  This would cause the child to have a large tummy, thin thigh muscles and flat buttocks.
  • Teenagers may hit puberty late and be short.  Celiac disease might cause some hair loss (a condition called alopecia areata)
What happens in adults with celiac disease?
Adults who begin to be ill with celiac disease might have a general feeling of poor health, with fatigue, irritability and depression, even if they have few intestinal problems.  One serious illness that often occurs is osteoporosis (loss of calcium from the bones).  A symptom of osteoporosis may be night-time bone pain.  About 5% of adults with celiac disease have anemia.  Lactose intolerance (problem with foods like milk) is common in patients of all ages with celiac disease.  It usually disappears when they follow a gluten-free diet.
Celiac disease sounds really serious!  How can I control it?
Celiac disease is serious.  Fortunately, you can control celiac disease just by not eating any gluten.  By following the right diet, you can reverse the damage caused by celiac disease and you'll feel better.  But, if you "cheat" on your diet, the damage will come back, even if you don't feel sick right away.  You'll have to explain your problem and the gluten-free diet to your family members and ask for their support and help.  It will take time for you and your family to learn how to avoid gluten in your diet.  You can contact one of the celiac support groups listed at the end of this handout.  These groups are excellent sources of information and advice.  They'll help you find gluten-free foods and good recipes, and give you tips for successfully living with celiac disease.

How can I be sure I have celiac disease?
New blood tests can help your doctor diagnose this disease.  It's necessary to have these blood tests before you start a gluten free-diet.  The diagnosis can be confirmed with a biopsy (taking a piece of tissue using a thin tube that is put into your intestines).  The best confirmation, though, is if your symptoms go away when you follow a strict gluten-free diet.  If you have Dermatitis Herpetiformis (an itchy, blistery skin problem), you have celiac disease.

Symptoms of celiac disease may include one, or more, of the following:

  • recurring abdominal bloating and pain
  • chronic diarrhea
  • constipation
  • weight loss
  • pale, foul-smelling stool
  • unexplained anemia (low count of red blood cells)
  • gas
  • bone pain
  • behavior changes
  • depression
  • muscle cramps
  • fatigue
  • pain in the joints
  • failure to thrive in infants
  • seizures
  • tingling numbness in the legs (from nerve damage)
  • pale sores inside the mouth, called aphthous ulcers
  • painful skin rash, called Dermatitis Herpetiformis
  • tooth discoloration or loss of enamel
  • missed menstrual periods (often because of excessive weight loss)
  • delayed growth

Anemia, delayed growth and weight loss are signs of malnutrition--not getting enough nutrients.  Malnutrition is a serious problem for anyone, but particularly for children because they need adequate nutrition to develop properly.

Some people with celiac disease may not have symptoms.  The undamaged part of their small intestine is able to absorb enough nutrients to prevent symptoms. However, people without symptoms are still at risk for the complications of celiac.

What Is the Treatment?
Celiac Disease as yet has no known cure, but can usually be effectively treated and controlled.  The only treatment for celiac disease is to follow a gluten-free diet FOR LIFE!  --that is, to avoid all foods that contain gluten.  Celiacs must be alert to hidden sources of gluten such as HVP/HPP (hydrolyzed vegetable/plant protein); malt; spelt; kamut; and certain drug products.  Today’s processed and packaged foods have many hidden sources of gluten which can be unintentionally ingested.  Particular care should be taken in the selection of soups, luncheon meats and sausages.

The person with Celiac Disease MUST READ THE LIST OF INGREDIENTS ON ALL LABELS, EVERY TIME, and even follow up with a telephone call to the company to make sure nothing with gluten is used in the production, such as flour on the conveyor belts, etc.  There is a great variation in sensitivity to gluten among those with Celiac Disease, and although one may have no obvious symptoms, damage to the intestinal lining may still occur.

As of January 1, 2006, all food companies are required by law to list the eight most common allergens, one of which is wheat.  What this means is that they must state on the label if any ingredient in their product is wheat or is derived from wheat.  Unfortunately, this law does not cover barley and rye.  If barley is present, it is usually listed as such.  Rye is rarely used so is not a problem.

For most people, following this diet will stop symptoms, heal existing intestinal damage, and prevent further damage.  Improvements begin within days of starting the diet, and the small intestine is usually completely healed--meaning the villi are intact and working--in 3 to 6 months.  (It may take up to 2 years for older adults.)

The gluten-free diet is a lifetime requirement.  Eating any gluten, no matter how small an amount, can damage the intestine.  This is true for anyone with the disease, including people who do not have noticeable symptoms.  Depending on a person's age at diagnosis, some problems, such as delayed growth and tooth discoloration, may not improve.

A GLUTEN-FREE DIET means avoiding ALL foods that contain wheat (including spelt, triticale, and kamut), rye, barley, and oats -- in other words, most grain, pasta, cereal, and many processed foods.  Despite these restrictions, people with celiac disease can eat a well-balanced diet with a variety of foods, including bread and pasta.  For example, instead of wheat flour, people can use potato, rice, corn, soy, or bean flour. Or, they can buy gluten-free bread, pasta, and other products from special food companies.  Plain meat, fish, rice, fruits, and vegetables do not contain gluten, so people with celiac disease can eat as much of these foods as they like.

The gluten-free diet is complicated.  It requires a completely new approach to eating that affects a person's entire life (sometimes, an entire family).  People with celiac disease have to be extremely careful about what they buy for lunch at school or work, eat at cocktail parties or grab from the refrigerator for a midnight snack.  EATING OUT CAN BE A CHALLENGE as the person with celiac disease learns to scrutinize the menu for foods with gluten and question the waiter or chef about possible hidden sources of gluten. Hidden sources of gluten include additives, preservatives, and stabilizers found in processed food, medicines, and mouthwash.  If ingredients are not itemized, you may want to check with the manufacturer of the product.  With practice, screening for gluten becomes second nature.

A health care professional who specializes in food and nutrition, can help people learn about their new diet.  Also, support groups are particularly helpful for newly diagnosed people and their families as they learn to adjust to a new way of life.

What Are the Complications of Celiac Disease?
Damage to the small intestine and the resulting problems with nutrient absorption puts a person with celiac disease at risk for several diseases and health problems.
  • Lymphoma and adenocarcinoma are types of cancer that can develop in the intestine.
  • Osteoporosis is a condition in which the bones become weak, brittle and prone to breaking.  Poor calcium absorption is a contributing factor to osteoporosis.
  • Miscarriage and congenital malformation of the baby, such as neural tube defects, are risks for untreated pregnant women with celiac disease because of malabsorption of nutrients.
  • Short stature results when childhood celiac disease prevents nutrient absorption during the years when nutrition is critical to a child's normal growth and development.  Children who are diagnosed and treated before their growth stops may have a catch-up period.
  • Seizures, or convulsions, result from inadequate absorption of folic acid.  Lack of folic acid causes calcium deposits, called calcifications, to form in the brain, which in turn cause seizures.
How Common Is Celiac Disease?
Celiac disease is the most common genetic disease in Europe.  In Italy, it’s 1 in 250 people and in Ireland about 1 in 100 people have celiac disease.  It is rarely diagnosed in African, Chinese or Japanese people.  A recent study in which random blood samples were tested for celiac disease suggests that as many as 1 in every 133 Americans may have it.  Celiac disease could be under diagnosed in the United States for a number of reasons:
  • Celiac symptoms can be attributed to other problems.
  • Many doctors are not knowledgeable about the disease.
  • Only a handful of U.S. laboratories are experienced and skilled in testing for celiac disease.
  • More research is needed to find out the true prevalence of celiac disease among Americans.
  • People with celiac disease tend to have other autoimmune diseases as well, including:
  • Dermatitis Herpetiformis
  • Thyroid Disease
  • Systemic Lupus Erythematosus
  • Type 1 Diabetes
  • Collagen Vascular Disease
  • Psoriasis
  • Liver Disease
  • Rheumatoid arthritis
  • Sjogren’s syndrome

The connection between Celiac and these diseases may be generic.

Dermatitis Herpetiformis
Dermatitis Herpetiformis (DH) is a severe itchy, blistering skin disease caused by gluten intolerance.  If you have DH, you have celiac disease since both are autoimmune disorders caused by gluten intolerance.  The rash usually occurs on the elbows, knees and buttocks.  Although people with DH do not usually have digestive symptoms, they often have the same intestinal damage as people with celiac disease.

DH is diagnosed by a skin biopsy, which involves removing a tiny piece of skin near the rash and testing it for the IgA antibody.  DH is treated with a medication to control the rash, such as Dapsone or Sulfapyridine.  Drug treatment may last several years.


This is a simple resource to the Gluten-Free (GF) diet.  Not all aspects of the diet are as clear-cut as portrayed by this Guide.  This is intended to be used as a safe and temporary survival tool until the newly diagnosed celiac can gather additional information.  This Guide was developed by nutrition experts and published by the Celiac Disease Foundation and the Gluten Intolerance Group.

Celiac Disease is a chronic digestive disorder found in individuals who are genetically susceptible.  Damage to the small intestine is caused by an immunological toxic reaction to the ingestion of gluten.  This does not allow food to be properly absorbed.  Even small amounts of gluten in foods may affect those with Celiac Disease and result in health problems.  Damage can occur to the small bowel even in the absence of symptoms.

Gluten is the generic name for certain types of proteins contained in the common cereal grains of wheat, barley, rye and possibly oats and derivatives from these.  

Rice, Corn, Soy, Potato, Tapioca, Beans, Sorghum, Quinoa, Millet, Buckwheat, Arrowroot, Amaranth, Tef, Flaxseed and Nut flours.


Breading Imitation Seafood Soup & Soup bases
Broth Malt Stuffing
Coating Mixes Marinades Thickeners
Communion Wafers Pastas Batter for frying
Croutons Processed Meats Soy Sauce
Imitation Bacon Roux Self-basting Poultry
Lipsticks Sauces Licorice

The key to understanding the GF diet is to become a good ingredient label reader.  Foods with labels that list the following ingredients are questionable and should not be consumed unless you can verify they do not contain or are derived from prohibited grains:
  • Brown Rice Syrup (frequently made from barley)
  • Dextrin (usually corn but may be derived from wheat)
  • Flour or cereal products
  • Hydrolyzed vegetable protein (HVP), vegetable protein, hydrolyzed plant protein (HPP) or textured vegetable protein (TVP)
  • Malt or malt flavoring (usually made from barley); MALT vinegar
  • Modified food starch or modified starch from unspecified or forbidden source
  • Flavorings in meat products
  • Soy Sauce or soy sauce solids (many soy sauces contain wheat)
  • Vegetable gum
  • Sushi rice, sake all ingredients need to be known
Wheat (Durum, Semolina, Kamut, Spelt), Rye, Barley, Triticale and Oats .


Call First - Verify ingredients by calling the manufacturer and specifying the ingredients and the lot number of the food in question.  State your needs clearly; be patient, persistent and polite.

If In Doubt, Go Without
If unable to verify ingredients or the ingredient list is unavailable –DO NOT EAT IT!

Add One New Food at a Time
When adding a new food item to your diet, particularly one that has questionable ingredients, introduce only one new food at a time.  Listen to your body for adverse reactions before starting a second food item.

Wheat Free Is Not Gluten Free
Wheat-free products may still contain rye, oats, barley or ingredients that are not GF.

The GF diet is a lifelong commitment and should not be started before being properly diagnosed with Celiac Disease.  Starting the diet without complete testing is not recommended and makes diagnosis difficult.

  1. the hamburger from the bun
  2. the croutons from the salad
  3. the gravy off the meat
  4. the topping off the pizza
  5. the filling from the pie crust
  6. the frosting off the cake


Store GF flours in separate airtight containers.  Flours to store in a cupboard include white rice flour, potato starch, cornstarch, sweet rice flour (for gravies and thickening), and Bette Hagman’s gourmet mix.  Brown rice flour, rice polish, soy flour and rice bran should always be stored in the refrigerator or freezer.  Store containers with rice pasta in the cupboard.  Some people store ALL their flours in the freezer, particularly if they don’t use them frequently.  

If there is more than one baker in your kitchen, maintain a separate flour sifter for GF flours.

GF baked products tend to dry out quickly.  Store them tightly wrapped in the refrigerator - or preferably - in the freezer.

Use xanthan gum to improve GF baked goods.  Baked products that include xanthan gum hold together better.  There are not as crumbly - and do not have the grainy texture usually associated with GF baked goods.  

Follow these rules when using xanthan gum:
Mix it in well with the flours being used in the recipes...preferably sifted with the flour.
Beat it in with all ingredients very thoroughly... 2 to 3 minutes with an electric mixer on high.

Xanthan gum and/or clear gel are available by mail order from gluten-free companies or from most health food stores.

Additional information is available at many websites dealing with gluten free living.  For your information, we have a list of articles that can be downloaded and printed on your printer.  Below is a list with a short description:

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