Celiac Disease is an incurable, inherited auto-immune disease in which the body reacts to the ingestion of gluten, setting off an auto-immune response that causes damage in the small intestine. The small intestine loses its ability to absorb nutrients from food, causing malabsorption, malnutrition, and other complications.
Gluten is a protein found in wheat, rye, barley and oats. Some of the other grains are triticale, spelt, kamut, durum, and semolina.
Celiac Disease is common and found in 1 out of 133 people with many still undiagnosed. Celiac Disease can become active at any age.
Celiac Disease is NOT an allergy!
Symptoms vary from person to person. There are no “typical symptoms”. Some are asymptomatic, which means they have no symptoms at all. The symptoms of Celiac Disease are so varied that it makes it difficult for doctors to correctly diagnose it. Diarrhea, weight loss, and malabsorption were the symptoms that doctors looked for before even considering a diagnosis of Celiac Disease.
Abdominal pain, bloating and distention
Acidosis
Anemia
Bone pain, osteoporosis,/osteopenia/osteomalacia
Chronic constipation
Chronic diarrhea
Cracks in corners of mouth
Dehydration
Depression
Edema
Electrolyte depletion
Fatigue or lack of energy
Increased appetite to the point of cravings
Intestinal gas
Mental fogginess
Mood changes
Muscle cramping, particularly in hands and legs
Neurological changes
Reduced padding on feet and buttocks
Reflux
Short stature
Sores in the mouth
Tooth enamel defects
Very dry skin
Weakness
Weight loss
Diagnosis is difficult and the patient usually suffers for about 11 years due to lack of knowledge by the medical profession.
Once considered as a possible diagnosis, it is done through a series of blood antigen tests. If these are positive, then a biopsy of the small intestine is done to confirm the diagnosis. Sometimes a blood test can come back positive, but the biopsy might be negative. It might be due to patchy damage and the doctor missing it, which could bring back the negative result.
There is also the chance you can test negative on both these tests, but still be what is considered “gluten intolerant”. No test will ever show this. If a person feels they have been through every conceivable test without finding an answer, then they should go this one step further and think about gluten intolerance. It means a person is not Celiac, because they do not have the intestinal damage, but could still react to the gluten. A trial run of the GF diet for 2-4 weeks might give them their answer. If they feel better, stick with it.
There is no cure for celiac disease. You can heal completely, but you can never cure. For the rest of your life, you must maintain a gluten-free diet. It is a rigid diet which eliminates oats, wheat, rye, and barley from the diet. This is a major lifestyle change for people, but one that gets them back to feeling healthy and normal again and eliminating all their symptoms. It is quite difficult starting out, but gets so very easy after a few months, particularly if you receive help through support groups. Perseverance pays off. There are no drugs to treat this, and you can never go back to eating those gluten-laden foods ever again.
You must read every single ingredient on ALL labels, and even then you may have to call a manufacturer to see about how the products are produced (conveyor belts, etc.)
You CANNOT remove hamburgers from buns, croutons from salads, gravy from meat, filling from pie crust, frosting off cake, topping off pizza, and never lick envelopes or stamps! Gluten is like arsenic to a celiac. Don’t let family members or friends tempt you with “just a little taste”.
You must have your own personal toaster, butter and anything else that could possibly get contaminated during the course of a day by other family members.
You must avoid all foods that contain gluten. Celiacs must also 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 is to be taken in the selection of soups, lunch meats, and sausages. A person with celiac disease must read all labels, every time, and even follow up with phone calls to manufacturers. Conveyor belts could be dusted with flour and not listed on the ingredient list.
For most people following this diet, the symptoms will stop and healing will begin within the intestinal tract, preventing further damage. Improvement usually begins within days of starting the diet. The villi could heal in about 3 to 6 months for younger children, and may take up to 2 years for older adults.
Dermatitis Herpetiformis (DH) is another form of celiac disease which is manifested in the form of a skin rash or blisters. The patient has a very itchy rash found on the elbows, arms, knees, and other parts of the body. Gluten has been found to have a close relationship with this skin rash. DH is often referred to as "celiac disease of the skin" while CD is referred to as "celiac disease of the gut." The blisters take about 7 to 10 days to stop itching and burning, and then they crust over. Usually a doctor will take a small biopsy of the skins cells around the lesions to diagnosed DH.
- Dermatitis herpetiformis
- Thyroid disease
- Systemic lupus erythematosus (connective tissue disorder)
- Type I diabetes
- Liver disease
- Collagen vascular disease (another connective tissue disorder)
- Rheumatoid arthritis (systemic disease of the joints)
- Sjogren’s syndrome (disorder of the eyes associated with all the above)
- Autism in children; they seem to improve dramatically on the GF diet.
The information contained in this web site should not be used as a substitute for the medical care and advice of your doctor. There may be variations in treatment that your doctor may recommend based on individual facts and circumstances. At Richland County Celiac Support Group we are not trained medical professionals. So, any advice offered by us is not intended to take the place of that offered by trained medical professionals. The goal of our site and our responses to your questions is to provide accurate information about the disease to both diagnosed and undiagnosed individuals, and to facilitate the diagnosis of the latter by trained medical professionals. We advise that you consult with your doctor if you are experiencing ANY symptoms of unknown origin.
In no event shall Richland County Celiac Support Group be liable for any special, incidental, indirect or consequential damages of any kind, or any damages whatsoever resulting from loss of use, data or profits, whether or not advised of the possibility of damage, and on any theory of liability, arising out of or in connection with the use or performance of this information.
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© 2007 Richland County Celiac Support Group