One of the hottest topics in medicine these last few years has been the gluten free diet. I’ve had countless numbers of patients ask me about “going gluten free” to help with weight reduction, low energy levels, gas, constipation, heart burn, or for various other reasons. The information about gluten and reasons for avoiding it are rather widespread – some of the information released is valid while others are rumors or just downright advertising.
What is Celiac disease, gluten intolerance and gluten sensitivity? In the medical field we refer to a condition called Celiac disease which is a condition that affects perhaps up to 1% of our population. The affected patient’s immune system can damage their small intestine as a reaction to Gluten, a common protein found in most modern day diets. People with the condition are advised to avoid wheat, rye, barley and many prepared foods because they may feel very ill if they consume these products.
Celiac disease is also called gluten sensitive enteropathy, Celiac sprue or nontropical sprue. Gluten intolerance may also be sometimes called gluten sensitivity, a less severe disorder that affects perhaps up to 10% of our population. Symptoms may be milder than with Celiac disease and may affect other areas of the body in addition to the gastrointestinal tract. The definition of gluten intolerance has been changing over the years as we work to understand more about the condition.
The small intestine is the part of the body which absorbs nutrients from the food that we eat. In patients with Celiac disease, the small intestine becomes damaged by the immune system so patients have problems absorbing nutrients from the food that they eat. Gluten is fairly indigestible in most people and some experts believe that there is a certain amount of gluten intolerance in all of us.
What are the symptoms of Celiac disease? Patients may experience diarrhea, weight loss, abdominal discomfort, excessive gas and vitamin/mineral deficiencies. Patients with gluten intolerance may be more prone to osteoporosis, iron deficiency anemia, autoimmune problems with the thyroid, liver, type 1 diabetes, and nervous system problems.
In addition, patients with Celiac disease may be more likely develop lymphoma which is a cancer of the intestinal lymph system. This is uncommon but we think that avoiding gluten can help prevent the development of lymphoma. Celiac disease has also been associated with a skin condition called dermatitis herpetiformis. This causes itchy, raised fluid filled areas on the skin mostly in areas such as the elbows, knees, buttocks, lower back, face, neck, trunk and sometimes in the mouth. The symptoms of this skin condition are mostly the intense itching and burning. Once the blisters rupture, the itching is relieved but scratching the blisters can rupture them and leave dark areas of skin and permanent scarring. Eliminating gluten for the diet may help the condition improve after several weeks of remaining on a gluten free diet. A medicine called Dapsone may be taken to help with the itching but this medication does not help heal the intestine which was damaged by the immune system.
How can you test me for Celiac disease? If you have symptoms that are very suspicious for Celiac disease there are a variety of tests that can help make the diagnosis in addition to being evaluated by a medical provider. One of the gold standard tests to help us determine whether you have Celiac disease is to take a biopsy of the lining of the small intestine. A small sample of tissue from your intestine is examined with a microscope after it has been collected during a procedure called an endoscopy. As you can imagine, this is not a procedure that is done while patients are awake so it is usually performed in the hospital or an outpatient surgical center where nurses and other medical providers can give you medication through an IV to help make you comfortable.
There are also blood tests that can help determine whether a patient has Celiac disease. These tests are often part of a “Celiac blood panel” but can be ordered separately. They are antibodies called the anti-total tissue transglutaminase (TTG) and anti-endomysium antibody (EMA) total imunoglobin A (total IGA), anti DGP antibody, antigliadin antibody (AGA), anti-F-actin test and sometimes antireticulin antibody (ARA). Your medical provider will help determine which tests are appropriate and interpret the results.
There is not a test however for gluten intolerance. The blood tests and intestinal biopsies may be completely normal for those who have gluten intolerance but they simply feel better eating a gluten free diet.
Who gets Celiac disease? We aren’t sure why people get Celiac disease but we think there is a genetic component. It is rare if people from northern Asia or Southern Africa and more common in patients from Europe, North and South America, South Asia, Middle East and North Africa.
Treatment: About 70% of people feel better two weeks after they stop eating foods with gluten. The blood antibody levels often return back to normal as patients stop eating foods with gluten. Gluten is the group of proteins found in wheat, rye and barley. It’s also hidden in a large number of prepared foods and supplements. It can be very challenging to eliminate gluten from your diet because it takes some major lifestyle changes. It is important to avoid eating gluten and being exposed to it in the air as well.
I recommend consultation with a dietician who specializes in helping patients with Celiac disease. They can help patients learn what foods to avoid and what foods you need in order to get a balanced diet.
There are a large number of stores that are now offering gluten free foods in certain areas of the United States.
1) Examples of gluten free foods are rice, corn, potato, beans, legumes (beans, etc.), nuts, seeds, and soy
2) Foods to avoid are obviously anything with wheat, rye, barley, brewer’s yeast, oats (unless labeled gluten free), and malts
3) Some people with Celiac disease cannot tolerate oats even if they are labeled gluten free
4) Wine is usually gluten free unless it contains gluten free flavorings
5) Most beers have gluten unless they are labeled “gluten free”
6) Many people with Celiac disease have trouble with dairy products until their intestines return to normal.
7) Make sure you are getting enough calcium and vitamin D
8) If you have Celiac disease, you should have blood tests for iron, folic acid, vitamin B12 and vitamin D to make sure your levels are adequate.
9) There is concern about patients with Celiac disease developing osteoporosis (low bone density) so some clinicians recommend getting a bone density test (DEXA) to measure your bone density.
I think that I may have gluten sensitivity, gluten intolerance or even Celiac disease – should I try a gluten free diet? I suggest you talk with your health care provider and a dietician before starting a gluten free diet because cutting out gluten doesn’t mean you will be healthier. After consultation with a medical provider, perhaps you be get tested for Celiac disease with some blood work and/or a biopsy. If these tests are negative, you can still try a gluten free diet to see if you feel better, but I’d recommend getting help from a dietician to make sure you understand where “hidden sources” that are not obvious in the foods that we eat. You also don’t want to miss out on the vitamins and minerals that wheat products provide. Manufactures of gluten free products may add sugar or fat to their products to simulate the texture of foods that contain gluten have. Gluten free products also often contain less iron, vitamin B and vitamin D than bread products so it’s important to make sure you’re getting enough of these in your diet from other sources.
Where can I find more information about Celiac disease?
1) American Celiac Disease Alliance: www.americanCeliac.org
2) American Gastroenterological Association: www.gastro.org/patient-center/digestive_conditions/Celiac-disease
3) Celiac Disease Foundation: www.Celiac.org
4) Gluten Intolerance Group of North America: www.gluten.net
5) National Foundation for Celiac Awareness (NFCA): www.Celiaccentral.org
6) National Library of Medicine: www.nlm.nih/gov/medlineplus/Celiacdisease.html
7) North American Society for the Study of Celiac Disease: www.nasscd.org
8) Celiac.com: www.Celiac.com
This document is for informational purposes only, and should not be considered medical advice for any individual patient. If you have questions please contact your medical provider.
I hope that you have found this information useful. Wishing you the best of health,
Scott Rennie, DO
References: Ciclitira PJ, King AL, Fraser JS. AGA technical review on Celiac Sprue. American Gastroenterological Association. Gastroenterology 2001; 120:1526