Comment From Washington: After an 8 year frustrating battle with bowel and gas problems I was finally diagnosed recently with sensitivity to gluten [celiac disease]. All wheat, oats, barley, and rye were eliminated from my diet. After 3 months, I woke up feeling like a new person.
The problem began in about 1992 when I was 62 years old. Symptoms included gas, incomplete or partially passed stool, and an unpredictable and urgent need to find a bathroom. Over the years the problem became worse until I constantly had to debate whether it was worth the risk to leave the house.
I saw many doctors and they all assured me that I did not have IBS. However, for 8 years none ever said anything about gluten.
Please put something in the next issue of IFFGD's publication Participate (now Digestive Health Matters) about gluten sensitivity. I have been amazed at the number of people who, after I opened the subject, said they were gluten intolerant-most of whom found out, as I did, after years of misery.
In the Fall 1998 issue of our quarterly publication, we printed an article by Jarol Knowles, MD that reviewed five diseases that affect the gastrointestinal (GI) system. (IFFGD Fact Sheet No. 148, Dietary Factors in Gastrointestinal Diseases). Symptoms of these diseases – celiac disease, gastroesophageal reflux disease (GERD), food allergies, lactose intolerance, and eosinophilic gastroenteritis – can sometimes coexist or be confused with a functional GI disorder. Depending upon the history and symptom presentation, these diseases may need to be considered when making a diagnosis. Significantly, they all have distinguishing characteristics that can differentiate them from functional GI disorders.
Celiac disease (sometimes known as celiac sprue or gluten intolerance) is a genetic, or hereditary, disease. The ingestion of gluten (found in wheat, barley, rye, and possibly oats) results in an immune response that causes damage to the small intestines and inhibits absorption of certain important nutrients.
The prevalence of celiac disease has not been well defined in the U.S., and the disorder has been considered an uncommon disease. The prevalence in the U.S. is reported to range from 1:250 to 1:1,500. Studies in several European countries indicate prevalence as high as 1 in 250 to 300 of the general population. Celiac disease is rarely diagnosed in African or Asian populations. [Results of a study by Fasano et.al., published in Arch Intern Med. 2003 Feb 10, suggests a prevalence of 1 in 133 in the U.S. general population.]
In the U.S., there may be a general lack of knowledge about the disease among many physicians. Some of the symptoms are similar to, but distinguishable from, those found in other disorders such as IBS, Crohn's disease, ulcerative colitis, diverticulosis, intestinal infections, chronic fatigue syndrome, and depression.
Symptoms of celiac disease include, but are not limited to, one or more of the following:
- recurrent abdominal bloating and pain
- chronic diarrhea
- pale and foul-smelling stool, gas
- weight loss
- missed menstrual periods
- delayed growth
- painful skin rash
- pale sores inside the mouth
- tingling numbness in the legs
- discoloration of the teeth
- bone pain
- joint pain
- muscle cramps
The disease can also be present without apparent symptoms, but can still lead to complications.
An American College of Gastroenterology Task Force in 2008 noted that in IBS patients where diarrhea or mixed diarrhea/constipation is the predominant bowel symptom a blood test for celiac disease is in order. The blood test measures the level of antibodies to gluten which can suggest whether or not celiac disease may be present; an examination of a tissue sample (biopsy) should be done to confirm a positive result. A biopsy of the small intestine is generally the most effective way to diagnose celiac disease. A biopsy may also be done, if it appears that celiac disease is present, to look for tissue damage.
Children with celiac disease have symptoms that can include chronic diarrhea, bloating, anemia, and failure to grow at a normal rate. Early intervention is key to preventing damaging complications of this disease, especially in childhood cases. There is a genetic predisposition to developing celiac disease, and a large majority of patients have at least one copy of a gene, called HLA-DR3.
In order to estimate incidence of the disease in the general population, researchers conducted a large genetic screen of over 22,000 newborns in Denver, Colorado. A subset of the infants were followed for 5 years to compare disease development in those having zero, one, or two copies of the susceptibility gene. Overall, roughly 1% (1 in 100) of all children at age 5 were estimated to have the disease. The children who had either one or two copies of the susceptibility gene were at an increased risk compared to children without the gene. In addition, the researchers found that females had a higher risk for disease development than males.
These results show that celiac disease is common in a population representative of the general population, and new screening strategies based on the study may help identify children at increased risk. Interestingly, other new studies have been revealing that onset or clinical symptoms of celiac disease is not restricted to children.
NIDDK Recent Advances & Emerging Opportunities: Digestive Diseases and Nutrition. February 2004.
Eliminating gluten from the diet is the treatment for celiac disease. This usually results in rapid improvement of symptoms and healing of the intestines. Gluten is a common ingredient in many foods including most grain, pasta, and cereal foods as well as many processed foods. Strict adherence to a gluten-free diet can be a challenge. There are several organizations to support people with celiac disease, including:
- The Celiac Disease Foundation (818-990-2354);
- The Celiac Sprue Association (877-272-4272);
- The Gluten Intolerance Group (206-246-6652); and
- The American Celiac Society Dietary Support Coalition (973-325-8837).
- Hoffenberg EJ, Mackenzie T, et al. A prospective study of the incidence of childhood celiac disease. J Pediatr 143:308-14, 2003.
- More information about Celiac disease is available on-line from the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), NIH Publication No. 04-4269, at: http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htm