Since David started eating baby food, he's had trouble with his tummy. We've had him tested for Cystic Fibrosis and numerous other things, but never Celiac Disease. I have heard of it and looked into it a while back, but David's Immunoglobin results came back good, so I blew it off. Now, when I look back, some of the symptoms mirror the troubles has and had in the past. i called the endocrinologist and they said they did not test for this. So, I guess this is my next test to push for. We're still waiting to hear back from the neurologist to get the spinal mri scheduled. The neurologist didn't see anything wrong with David from a reflex our neuromuscular standpoint. He could see the scoliosis through David's back. He said that if the spinal mri came out okay, then we would not need to come back to see him unless there were problems. Here are some things that I found on celiacs that has me interested in in having him tested:
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 nighttime bone pain. Also, about 5% of adults with celiac disease have anemia.
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 in the right column 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.
Celiac disease is a genetic disease, meaning it runs in families. Sometimes the disease is triggered—or becomes active for the first time—after surgery, pregnancy, childbirth, viral infection, or severe emotional stress.
What are the symptoms of celiac disease?
Celiac disease affects people differently. Symptoms may occur in the digestive system, or in other parts of the body. For example, one person might have diarrhea and abdominal pain, while another person may be irritable or depressed. In fact, irritability is one of the most common symptoms in children.
Symptoms of celiac disease may include one or more of the following:
- gas
- recurring abdominal bloating and pain
- chronic diarrhea
- constipation
- pale, foul-smelling, or fatty stool
- weight loss/weight gain
- fatigue
- unexplained anemia (a low count of red blood cells causing fatigue)
- bone or joint pain
- osteoporosis, osteopenia
- behavioral changes
- tingling numbness in the legs (from nerve damage)
- muscle cramps
- seizures
- missed menstrual periods (often because of excessive weight loss)
- infertility, recurrent miscarriage
- delayed growth
- failure to thrive in infants
- pale sores inside the mouth, called aphthous ulcers
- tooth discoloration or loss of enamel
- itchy skin rash called dermatitis herpetiformis
A person with celiac disease may have no symptoms. People without symptoms are still at risk for the complications of celiac disease, including malnutrition. The longer a person goes undiagnosed and untreated, the greater the chance of developing malnutrition and other complications. Anemia, delayed growth, and weight loss are signs of malnutrition: The body is just not getting enough nutrients. Malnutrition is a serious problem for children because they need adequate nutrition to develop properly. (See Complications.)
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Why are celiac disease symptoms so varied?
Researchers are studying the reasons celiac disease affects people differently. Some people develop symptoms as children, others as adults. Some people with celiac disease may not have symptoms, while others may not know their symptoms are from celiac disease. The undamaged part of their small intestine may not be able to absorb enough nutrients to prevent symptoms.
The length of time a person is breastfed, the age a person started eating gluten-containing foods, and the amount of gluten-containing foods one eats are three factors thought to play a role in when and how celiac disease appears. Some studies have shown, for example, that the longer a person was breastfed, the later the symptoms of celiac disease appear and the more uncommon the symptoms.
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How is celiac disease diagnosed?
Recognizing celiac disease can be difficult because some of its symptoms are similar to those of other diseases. In fact, sometimes celiac disease is confused with irritable bowel syndrome, iron-deficiency anemia caused by menstrual blood loss, Crohn’s disease, diverticulitis, intestinal infections, and chronic fatigue syndrome. As a result, celiac disease is commonly underdiagnosed or misdiagnosed.
Recently, researchers discovered that people with celiac disease have higher than normal levels of certain autoantibodies in their blood. Antibodies are protective proteins produced by the immune system in response to substances that the body perceives to be threatening. Autoantibodies are proteins that react against the body’s own molecules or tissues. To diagnose celiac disease, physicians will usually test blood to measure levels of
- Immunoglobulin A (IgA)
- anti-tissue transglutaminase (tTGA)
- IgA anti-endomysium antibodies (AEA)
Before being tested, one should continue to eat a regular diet that includes foods with gluten, such as breads and pastas. If a person stops eating foods with gluten before being tested, the results may be negative for celiac disease even if celiac disease is actually present.
If the tests and symptoms suggest celiac disease, the doctor will perform a small bowel biopsy. During the biopsy, the doctor removes a tiny piece of tissue from the small intestine to check for damage to the villi. To obtain the tissue sample, the doctor eases a long, thin tube called an endoscope through the mouth and stomach into the small intestine. Using instruments passed through the endoscope, the doctor then takes the sample.
Screening
Screening for celiac disease involves testing for the presence of antibodies in the blood in people without symptoms. Americans are not routinely screened for celiac disease. Testing for celiac-related antibodies in children less than 5 years old may not be reliable. However, since celiac disease is hereditary, family members, particularly first-degree relatives—meaning parents, siblings, or children of people who have been diagnosed—may wish to be tested for the disease. About 5 to 15 percent of an affected person’s first-degree relatives will also have the disease. About 3 to 8 percent of people with type 1 diabetes will have biopsy-confirmed celiac disease, and 5 to 10 percent of people with Down syndrome will be diagnosed with celiac disease.
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What is the treatment?
The only treatment for celiac disease is to follow a gluten-free diet. When a person is first diagnosed with celiac disease, the doctor usually will ask the person to work with a dietitian on a gluten-free diet plan. A dietitian is a health care professional who specializes in food and nutrition. Someone with celiac disease can learn from a dietitian how to read ingredient lists and identify foods that contain gluten in order to make informed decisions at the grocery store and when eating out.
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. The small intestine is usually completely healed in 3 to 6 months in children and younger adults and within 2 years for older adults. Healed means a person now has villi that can absorb nutrients from food into the bloodstream.
In order to stay well, people with celiac disease must avoid gluten for the rest of their lives. Eating any gluten, no matter how small an amount, can damage the small intestine. The damage will occur in anyone with the disease, including people without noticeable symptoms. Depending on a person’s age at diagnosis, some problems will not improve, such as delayed growth and tooth discoloration.
Some people with celiac disease show no improvement on the gluten-free diet. This condition is called unresponsive celiac disease. The most common reason for poor response is that small amounts of gluten are still present in the diet. Advice from a dietitian who is skilled in educating patients about the gluten-free diet is essential to achieve the best results.
Rarely, the intestinal injury will continue despite a strictly gluten-free diet. People in this situation have severely damaged intestines that cannot heal. Because their intestines are not absorbing enough nutrients, they may need to receive nutrients directly into their bloodstream through a vein, or intravenously. People with this condition may need to be evaluated for complications of the disease. Researchers are now evaluating drug treatments for unresponsive celiac disease.
The Gluten-free Diet
A gluten-free diet means not eating foods that contain wheat (including spelt, triticale, and kamut), rye, and barley. The foods and products made from these grains are also not allowed. In other words, a person with celiac disease should not eat 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 gluten-free bread and pasta. For example, people with celiac disease can use potato, rice, soy, amaranth, quinoa, buckwheat, or bean flour instead of wheat flour. They can buy gluten-free bread, pasta, and other products from stores that carry organic foods, or order products from special food companies. Gluten-free products are increasingly available from regular stores.
Checking labels for “gluten free” is important since many corn and rice products are produced in factories that also manufacture wheat products. Hidden sources of gluten include additives such as modified food starch, preservatives, and stabilizers. Wheat and wheat products are often used as thickeners, stabilizers, and texture enhancers in foods.
“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. Recommending that people with celiac disease avoid oats is controversial because some people have been able to eat oats without having symptoms. Scientists are currently studying whether people with celiac disease can tolerate oats. Until the studies are complete, people with celiac disease should follow their physician’s or dietitian’s advice about eating oats. Examples of foods that are safe to eat and those that are not are provided in the table below.
The gluten-free diet is challenging. It requires a completely new approach to eating that affects a person’s entire life. Newly diagnosed people and their families may find support groups to be particularly helpful as they learn to adjust to a new way of life. People with celiac disease have to be extremely careful about what they buy for lunch at school or work, what they purchase at the grocery store, what they eat at restaurants or parties, or what they grab for a snack. Eating out can be a challenge. If a person with celiac disease is in doubt about a menu item, ask the waiter or chef about ingredients and preparation, or if a gluten-free menu is available.
Gluten is also used in some medications. One should check with the pharmacist to learn whether medications used contain gluten. Since gluten is also sometimes used as an additive in unexpected products, it is important to read all labels. If the ingredients are not listed on the product label, the manufacturer of the product should provide the list upon request. With practice, screening for gluten becomes second nature.
The Gluten-free Diet: Some Examples
In 2006, the American Dietetic Association updated its recommendations for a gluten-free diet. The following chart is based on the 2006 recommendations. This list is not complete, so people with celiac disease should discuss gluten-free food choices with a dietitian or physician who specializes in celiac disease. People with celiac disease should always read food ingredient lists carefully to make sure that the food does not contain gluten.
Allowed Foods |
Amaranth
Arrowroot
Buckwheat
Cassava
Corn
Flax
Indian rice grass | Job’s tears
Legumes
Millet
Nuts
Potatoes
Quinoa
Rice | Sago
Seeds
Soy
Sorghum
Tapioca
Wild Rice
Yucca |
Foods To Avoid |
Wheat - Including einkorn, emmer, spelt, kamut
- Wheat starch, wheat bran, wheat germ, cracked wheat, hydrolyzed wheat protein
| Barley
Rye
Triticale (a cross between wheat and rye) |
Other Wheat Products |
Bromated flour
Durum flour
Enriched flour
Farina | Graham flour
Phosphated flour
Plain flour | Self-rising flour
Semolina
White flour |
Processed Foods That May Contain Wheat, Barley, or Rye* |
Bouillon cubes
Brown rice syrup
Chips/potato chips
Candy
Cold cuts, hot dogs, salami, sausage
Communion wafer | French fries
Gravy
Imitation fish
Matzo
Rice mixes
Sauces | Seasoned tortilla chips
Self-basting turkey
Soups
Soy sauce
Vegetables in sauce |
| * Most of these foods can be found gluten-free. When in doubt, check with the food manufacturer. |
Symptoms
Celiac disease was once thought of a disease with only GI symptoms. It is now recognized that the disease is a multi-symptom, multi-system (organ) disease. Celiac disease also does not routinely present with the 'textbook' symptoms that physicians learn. More often it presents with symptoms that can mimic other problems.
Most physicians recognize the classic symptoms of celiac disease : diarrhea, bloating, weight loss, anemia, chronic fatigue, weakness, bone pain, and muscle cramps. Physicians may not be aware that celiac disease frequently presents with other symptoms, some that do not involve the small intestine. More often, symptoms can include constipation, constipation alternating with diarrhea, or premature osteoporosis. Overweight persons may also have undiagnosed celiac disease. Children may exhibit behavioral, learning or concentration problems, irritability, diarrhea, bloated abdomen, growth failure, dental enamel defects, or projectile vomiting. Others will have symptoms such as rheumatoid conditions, chronic anemia, chronic fatigue, weakness, migraine headaches, nerve problems such as tingling of hands or difficulty walking, or other conditions that are unexplained and/or do not respond to usual treatment. People may have one or more of the above symptoms. Patients are frequently misdiagnosed as having 'irritable bowel syndrome', 'spastic colon/bowel', or Crohn's disease'.
Diagnosis
Initial screening for CD is a blood test taken by your physician. The test can be referred to as a Celiac Panel or by the names of the individual tests. To provide the most accurate information,the blood test should include the following tests: anti-endomysial antibody (lgA EMA) and anti-gliadin antibody (lgA & IgG), and tissue transglutaminase (tTG IgA). These tests are very sensitive and specific for celiac disease. A gastroenterologist takes small intestine tissue biopsies if the results of the antibody test(s) are positive or he/she has a strong suspicion of CD. A biopsy showing damaged villi in the small intestine is the first half of the 'Gold Standard' to diagnosing CD. The second half of the 'Gold Standard' is improvement of health with the gluten-free diet.
It is possible, in some situations, to have normal blood tests and still have celiac disease.
Treatment
Strict adherence to a gluten-free diet for life is the only treatment currently available. This involves the elimination of wheat, rye, barley, and derivatives of these grains from your diet. Medication is not normally required, unless there is an accompanying condition, e.g. osteoporosis, dermatitis herpetiformis, etc. Thriving, showing improvement and return of health on the gluten-free diet is the second half of the 'gold standard' of being diagnosed with CD.
Questions to Ask Your Doctor:
- Should I take nutritional supplements?
- Could I have associated food intolerances?
- Where can I have a bone density study?
- What other concerns should I have?
- How can I find out about the diet?
Prognosis
Excellent, if you stay on the gluten-free diet. The small intestine will steadily heal and start absorbing the needed nutrients. You should start feeling better almost immediately; however, complete recovery may take several months to years.
Related Disorders
Dermatitis herpetiformis is also present in some people with celiac disease. Other autoimmune disorders that people with CD are at greater risk to develop include Addison' s disease, autoimmune chronic active hepatitis, Alopecia Areata, Graves' disease, insulin-dependent diabetes mellitus (type 1), myasthenia gravis, scleroderma, Sjogren's syndrome, lupus, and thyroid disease. Thyroid diseases and diabetes are the two most commonly associated diseases found with celiac disease. Thyroid disease is most commonly associated with DH.
Other conditions frequently seen in persons with gluten intolerance include anemia, early bone disease, Downs Syndrome, and fertility problems. Some persons with DH also have a higher incidence of other skin conditions, such as eczema.
While other connections have been suggested - such as with autism, MS, and mycosis fungoides, the research is either inconclusive, suggests a weak connection or offers no substantial connection.
As knowledge of gluten intolerance diseases expands and new findings become available, you can expect that the list of associated health problems and conditions will also change.
