About Celiac Disease
What is Celiac Disease?
Celiac disease (also known as celiac sprue, nontropical sprue, and gluten-sensitive enteropathy) is a chronic, auto-immune disease that damages the small intestine and can cause a host of additional (and confusing) symptoms. Dermatitis Herpetiformis (Duhring's disease) is a form of celiac disease that produces extremely itchy small blisters and hivelike swellings on the skin. Despite its name, it has nothing to do with the herpes virus.
The only treatment for celiac disease is a gluten-free diet. By removing the gluten from the diet, the immune response is suppressed. When gluten is introduced back into the diet, the immune response reoccurs. A study published in 2001 in the medical journal The Lancet showed that celiacs who didn't adhere to a gluten-free diet were six times as likely to die as would be expected. Those who followed the diet were very near to normal.
Celiac disease used to be considered a rare disease in the United States. The prevalence of the disease in many European countries has prompted research, and recent studies have shown an estimated 1 in 133 to 1 in 250 people in the United States have the disease. Unfortunately, most of these people are still undiagnosed.
The symptoms of celiac disease are similar to many other conditions. Celiac disease has symptoms similar to irritable bowel syndrome, anemia, chronic fatigue, and depression. Mal-absorption from untreated celiac disease leads to conditions such as night blindness, anemia, osteoporosis, and vitamin deficiencies. For a detailed discussion of the symptoms of celiac disease, see our section on symptoms below. Moberg Research and the National Foundation for Celiac Awareness (NIH) have created an interactive online course providing an overview of celiac disease.
More About Celiac Disease (from other web sites)
- The National Digestive Diseases Information Clearinghouse: Celiac Disease
- Gluten Intolerance Group of North America: About Celiac Disease
- American Family Physician: Celiac Disease (2007) and Detecting Celiac Disease in Your Patients (1998)
- American Journal of Clinical Nutrition: The Widening Spectrum of Celiac Disease
- British Medical Journal: Coeliac Disease
- Science Daily: Celiac Disease Not As Uncommon As Once Thought, Say Researchers At Wake Forest
The immune reaction causes the small intestine to become swollen and inflamed. Inside the small intestine are small, hair-like projections called villi. These villi become blunted, reducing the ability of the body to absorb nutrients (See low power microscope image of flattened villi, and a high power microscope image from the Eccles Health Sciences Library at the University of Utah). Continued inflammation of the villi can lead to cancers or refractory sprue, a condition where the villi cannot heal.
Symptoms of Celiac Disease
DISCLAIMER: This is intended as a general information resource. It is NOT intended for use in diagnosis, treatment, or any other medical application. Please consult your physician for professional medical advice and treatment. Certain terms and concepts have been simplified for the sake of readability.
Anemia - is the most common symptom. Most often it is treated with iron supplements, but, of course, they are not absorbed and the condition never improves. Anemia can also contribute to fatigue and depression, other common symptoms. Sometimes, it is the only symptom.
Irritable Bowel Syndrome - up to 20% of IBS sufferers actually have Celiac Disease. Many doctors (and patients) think it's a simple case of 'nerves' and a psychological problem. If IBS 'runs' in your family, it might be from Celiac Disease, which is genetically transmitted.
Migraine Headaches - some people have migraines triggered by low blood sugar, another symptom of malabsorbtion of nutrients. If your migraines occur in the morning or after a long fast, you might want to investigate a link with Celiac Disease.
Edema - or fluid retention in the ankles and lower legs. This can be caused by low blood protein levels. Even if a Celiac eats lots of protein, it doesn't mean that it is absorbed by the body.
Night Blindness & Dry Eyes - is sometimes associated with Celiac Disease because the body cannot absorb the vitamin A that would prevent these conditions.
Diarrhea & Constipation - 60% of Celiacs will have diarrhea with the severity increasing the longer it goes untreated. 20% will suffer from severe constipation, again, worsening the longer it is untreated. 50% of Celiacs suffer from lactose intolerance as the villi are too damaged to digest dairy products.
Cramps, Bloating, Pain - many times this can be transitory, so the doctor and the patient attribute it to something else ... '...if I hadn't had the onions on the salad... I ate too much at dinner last night ...I'm getting older and I can't digest things any more.' However, normal digestion shouldn't hurt. And normal digestion doesn't include a lot of intestinal gas.
Osteoporosis/Osteopenia - if your body can't absorb the calcium and magnesium you eat and take as supplements, your bones are going to get thinner. 100% of patients diagnosed with Celiac Disease as adults have this problem. Bone and joint pain are sometimes the result as well as fractures.
Alopecia - which is a technical term for 'hair loss', is not a common symptom, but it should be considered as it can accompany Celiac Disease. Some people lose hair in irregular patches on their scalps; others lose all their hair - everywhere. About one in 85 people with alopecia have CD.
Heartburn or G.E.R.D. - Can be masked with powerful prescription drugs, but they do not address the cause. If your small intestine is inflamed and sore and so is your stomach, which leads to acid reflux, maybe it's time to find out the cause. Anyone taking prescriptions for diarrhea/IBS and heartburn and anemia and osteoporosis might want to consider a test for celiac disease.
Chronic Fatigue - that just won't go away no matter how much rest you get. A starving body is just not energetic and can't function at its potential. If you put low-test gasoline laden with impurities into a racing car engine, the car is going to run - but it's not going to run well. The onset can be so gradual that some people forget what it feels like to feel full of energy.
Liver Problems - may plague undiagnosed Celiacs because their blood tests show elevated liver enzymes characteristic of the 'alcoholic liver'. Since many alcoholics do not eat a balanced diet, the resultant malnutrition shows up in their liver. Celiacs, of course, can eat a balanced diet religiously, and still have malnutrition and an 'alcoholic liver'. So, if your doctor tells you to not drink so much as your liver is being affected... and you don't drink or only drink occasionally, you might want to pursue the cause further.
Dermatitis Herpetiformis - is another way of saying 'herpes-like outbreaks on the skin'. These are usually on the elbows, knees, buttocks and scalp. They are unsightly and itch. Many dermatologists will try to treat the outbreak with steroid treatments.
Infertility - in the female Celiac is well documented. The body is not going to take on the extra burden of carrying a child when it is starving. And, of course, the endocrine system is not going to be putting out the chemicals it needs to regulate all the glands as it doesn't have the raw materials to work with.
Bad Dental Enamel - which leads to lots of cavities, crowns, extractions, bridges, etc. Dental health is affected because the body cannot absorb the calcium needed to build strong teeth.
Depression - is common in Celiacs. Of course, if you're suffering from chronic fatigue, your tummy hurts most of the time, and you often can't leave the house because of your IBS, it might be normal to feel depressed! If your blood cannot supply your brain with sufficient oxygen because of anemia, that can lead to psychological problems, too. Again, the onset of all of these might be so gradual that you find yourself forgetting what 'normal' and 'happy' feels like.
Compare your symptoms against the symptom checklist (adapted by permission from Celiac DiseaseóA Hidden Epidemic by Peter H.R. Green)
Getting a Diagnosis
This is sometimes difficult as many physicians were taught that Celiac Disease is a very rare (one in 5,000) disorder with the only symptoms being chronic wasting and diarrhea and only found in young children. They are often very, very reluctant to order the tests.
Actually, CD is found in more like one in 133 people in the US and can become critical at any point in a person's life. Detecting Celiac Disease in Your Patients from American Family Physician (http://www.aafp.org/afp/980301ap/pruessn.html) is a site where you can download and print out current CD information to give to your doctor. If your doctor will still not order the tests, you can obtain them without a prescription at EnteroLab (http://www.enterolab.com).
It's very important that you still be consuming gluten (wheat products) before you have these tests (except for the DNA). If you stop eating any gluten before diagnosis, the tests can come back as a false negative.
Tests - to determine if a person has Celiac Disease include blood tests, DNA tests and intestinal biopsy. The blood test determines if your body has produced antibodies to gluten that has leaked into the blood stream from the intestines. The DNA test looks at your genes to determine whether it is possible that you could develop CD at some point in your life. And, the intestinal biopsy looks at a sample of your small intestine to see if the villi are damaged, a sure sign of CD.
The biopsy - is often used as the 'gold standard' or the only definitive 'proof' that a person has Celiac Disease. However, a pathologist has to be very skilled to identify slight damage to the villi and some damage can only be detected with an electron microscope. Also, the damage to the small intestine initially appears in patches, so the sample might have been taken from an undamaged area. Dr. Fine says that a person should not rely only on a biopsy for diagnosis because, by the time the villa are 'flat-lined', the damage to the gut is in an advanced stage.
To biopsy or not - is a question each person with a positive blood test will have to answer for himself or herself. If a person does have the biopsy and it is positive for CD, it means a definitive diagnosis and certain tax breaks and leeway in taking food on board planes and what not. Under the Afordable Care Act you cannot be denied coverage for a pre-existing condition with the exception of individual plans that were grandfathered in (you can still purchase plans at the ACA insurance marketplace without restriction on pre-existing coverage).
The only treatment for celiac disease is following a strict gluten-free diet for life. By removing all gluten from the diet, the immune response is suppressed and the intestine is allowed to heal. As the body is again able to absorb nutrients, some conditions associated with celiac disease may improve.
Maintaining a gluten-free diet is a bit daunting, to say the least. For information on a gluten-free diet, please see these pages on our web site:
- Gluten Free Shopping - Includes guides to stores for gluten-free shopping, a list of on-line shopping sites and information on allergen and gluten-free labeling
- Gluten-Free Dining Out - Dining out tips and a guide to reviewed restaurants
- Gluten-Free Recipes - Recipes submitted by our members as links to online recipe collections
Our parent organization, the Celiac Support Association, has an on-line guide to the gluten free diet and life style.
Since there is no cure for celiac disease, only the treatment of a lifelong diet, be wary of any web sites or advertising claiming to offer one.
Many adults diagnosed with celiac disease require additional medical attention because of the effects of years of gluten ingestion. Many people are misdiagnosed and suffer unknowingly with celiac disease for many years as the average time in the US from onset of symptoms to diagnosis is over 10 years. Untreated celiac disease can cause several other health conditions such as osteoporosis, liver disease and anemia. We recommend that adults work with a doctor specializing in internal medicine or gastroenterology. An excellent article to help educate a physician about celiac disease was published in American Family Physician: Detecting Celiac Disease in Your Patients.
Celiac disease probably affects 1 in 150-200 people in Europe. Recent studies has shown that it affects a similar number of people in the United States. An analysis of 13,000 Red Cross blood donors showed the presence of CD antibodies in 1 in 133 Americans, so the true number may be much higher than previous estimates.
Associated autoimmune diseases
Celiac Disease is more common in people with the following other autoimmune diseases. If you have any of these conditions, it's a good idea to be checked for Celiac, too.
- Diabetes mellitus type 1
- Thyroid disease
- Sjögren's syndrome
- Collagen disorders
- Rheumatoid arthritis
- Liver disease
- Down syndrome
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- 2 Gluten Intolerance Group of North America. "About Celiac Disease." https://www.gluten.net/resources/celiac-disease/
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- 5 Wake Forest University Baptist Medical Center. "Celiac Disease Not As Uncommon As Once Thought, Say Researchers At Wake Forest." Science Daily (January 28, 2000) http://www.sciencedaily.com/releases/2000/01/000128071928.htm
- 6 Fasano, Alessio, Irene Berti, Tania Gerarduzzi, Tarcisio Not, Richard B. Colletti, Sandro Drago, Yoram Elitsur, Peter H. R. Green, Stefano Guandalini, Ivor D. Hill, Michelle Pietzak, Alessandro Ventura, Mary Thorpe, Debbie Kryszak, Fabiola Fornaroli, Steven S. Wasserman, Joseph A. Murraya and Karoly Horvath. "Prevalence of Celiac Disease in At-Risk and Not-At-Risk Groups in the United States." Archives of Internal Medicine 163, no. 3 (February 10, 2003): 286-292.
Last modified on Thursday, 01-Dec-2016 14:46:28 MST