Gluten is the substance found in wheat and grain products that has been causing a stir – in both the nutrition field and the stomachs of those who cannot tolerate too much, or any, of it. Gluten-free diets have become the answer for these individuals, but that change in diet isn’t as easy as it sounds. Dr. Ivor Hill, director of the Celiac Disease Center at Nationwide Children’s Hospital, explains how listening to the body and carefully monitoring what one eats can relieve symptoms, as well as fix the damage that has already been done.
What is the cause of celiac disease?
Celiac disease is an autoimmune disorder that has both a genetic component and a precipitating (trigger) component. The genetic component was first appreciated by the fact that celiac disease occurs more commonly in family members of an affected individual than in the general population. Subsequently, we have been able to identify certain genes that are associated with celiac disease. The trigger component is the ingestion of foods that contain wheat, barley or rye (or gluten). People with the genetic predisposition to celiac disease will only develop the condition if they ingest gluten. Conversely, if someone develops celiac disease, this can be avoided by removing all products that contain gluten from their diets.
What are the signs and symptoms of celiac disease? What does the disease do on a molecular level?
Clinical manifestations of celiac disease are extremely variable. The hallmark of celiac disease is progressive damage to the lining of the small intestine that is caused by a cascade of inflammatory events, which are precipitated by ingesting gluten. Consequently, many of the presenting symptoms relate to the gastrointestinal tract and include diarrhea, abdominal pain, excessive gassiness or bloating, nausea, weight loss and, in some cases, constipation. However, many people with celiac disease will first present with non-gastrointestinal symptoms such as anemia, fatigue, a skin condition known as dermatitis herpetiformis, growth failure in children, delayed onset of puberty, infertility in women, dental enamel deficiency, arthritis, neurological problems and unexplained hepatitis.
Is there any way to test for celiac disease?
Once an individual is suspected of having celiac disease, he or she can be tested for certain antibodies that develop. A number of tests are commercially available, including antibodies to tissue transglutaminase, endomysium and deamidated gliadin peptides. The tissue transglutaminase is a reliable and accurate test and is recommended by most experts in the field. If the antibody levels are elevated, then it is generally recommended the individual be referred to a gastroenterologist for an endoscopy to obtain a biopsy (which is a small sample of the lining of the intestines). This is examined to look for the characteristic changes that occur with celiac disease and, if present, it confirms the diagnosis.
What is the treatment for celiac disease?
Currently the only treatment for celiac disease is a strict gluten-free diet for life. With this, there is usually a complete resolution of symptoms and healing of the damage to the intestines.
There are alternative forms of treatment being investigated, including digestive enzymes that can be taken with food to break down the gluten so that it does not cause damage and drugs that block some of the inflammatory cascade to prevent the damage. None of these has yet been found to be as effective and safe as the gluten-free diet.
What happens if someone with celiac disease inadvertently ingests a large amount of gluten?
People with celiac disease who are doing well on the gluten-free diet and who then accidentally (or knowingly) ingest gluten will often have symptoms such as pain or diarrhea and feel unwell again. In some cases, people with celiac disease who have done well for a long time on the gluten-free diet may initially have very little in the way of symptoms when they ingest gluten again. However, continued ingestion of gluten, in these cases, will result in the progressive damage to the lining of the intestines returning and, eventually, this will result in the recurrence of symptoms.
Are there positives to a gluten-free diet for those who don’t suffer from the disease? Are there negatives? What nutrients are lost with this
change in diet?
There are some people who do not have celiac disease but who claim they feel better and their symptoms disappear when they go on a gluten-free diet. This has spawned the belief that there is an entity of non-celiac gluten sensitivity (NCGS). The symptoms of NCGS are indistinguishable from those of celiac disease, but there is no elevation in antibody levels and no evidence of inflammation or damage to the lining of the small intestine. While it is believed that NCGS is a genuine condition, it is much less common than previously claimed. A gluten-free diet does not just eliminate the protein fractions of wheat, barley and rye that cause celiac disease, but also removes a lot of other products that are found in the starch component of these products. Some people who feel better on a gluten-free diet may do so because these “starch” products are highly fermentable and can cause abdominal complaints, such as pain, gas and bloating, that improve when eliminated.
The gluten-free diet does have potential deficiencies, including fiber, calcium and other vitamins and minerals. For this reason, it is recommended that any person who chooses to go gluten-free should consult with a nutritionist to find alternative sources of these nutrients to supplement his or her diet.
Are there any products a sufferer should avoid at all costs? If a label says “gluten-free” or “low in gluten,” is it regulated by the FDA?
Strict avoidance of products that contain gluten is mandatory. This is easier said than done as gluten is found hidden in many commercially available foods. Until recently, this meant that people with celiac disease had to carefully scrutinize food labels to look for clues that there might be gluten present. New food labeling laws have improved the situation somewhat. Wheat is one of the allergens that must now be listed on all labels if present. The FDA has also mandated that, for a product to be labeled as gluten-free, there must be less than 20 parts per million of gluten in the food. This number was chosen as it is the lowest level that can be measured and studies have shown that below this level, the vast majority of people with celiac disease will not have an adverse reaction. It is also the number used to label gluten-free foods elsewhere in the world and, in particular, throughout Europe.
Is caramel coloring harmful to people with celiac disease?
Caramel coloring is usually made from corn and therefore is not harmful.
Who is most susceptible to this disease?
Onset of symptoms of celiac disease can occur at any age and has been identified throughout the world with perhaps the exception of East Asians and Africans. In these latter two groups, it is unclear whether the lack of celiac disease is because the genetic potential does not exist or because the staple diet is not wheat-based. Women appear to be affected twice as commonly as men for reasons that are not clear.
Bio Box:
Dr. Ivor Hill is director of the Celiac Disease Center at Nationwide Children’s Hospital. He is also professor of clinical pediatrics at The Ohio State University College of Medicine.
Hill studied at Wake Forest University and Brenner Children’s Hospital in North Carolina, where he was the chief of the Division of Pediatric Gastroenterology and was professor of pediatrics and internal medicine. His Bachelor of Medicine and Bachelor of Surgery come from the University of Cape Town Medical School in South Africa and his graduate education came from Addington Hospital in Durband, South Africa, the Red Cross War Memorial Children’s Hospital in Cape Town and Groote Schuur Hospital, also located in South Africa.
He was also the chairman of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition, which helped to develop the first evidence-based guidelines for diagnosing and treating celiac disease in children.
Hill currently serves on the editorial boards for the Journal of Pediatric Gastroenterology and Nutrition and the Journal of Pediatrics.
