Celiac: Not Just a GI Disease
Christine Doherty, ND
In the world of the 10-minute diagnostic workup, Celiac disease often requires thinking outside the box. Too often, celiac is considered a cause of chronic diarrhea, end of story. Often, celiac disease is boiled down to being just a gastrointestinal disease, but it has many extra intestinal manifestations, symptoms of which are frequently – but not limited to – the neurological, endocrine and immune systems. There are challenges in recognizing who should be tested, and no clear consensus exists as to which tests firmly establish the diagnosis. Even the definition of the gluten-free diet and which foods to include or exclude can be controversial. In July 2006, the National Institutes of Health (NIH) launched a campaign to increase awareness and diagnosis of celiac disease to establish guidelines as to when and how patients should be tested and treated. Here is a review of current recommendations.
About Celiac Disease
The reality is that celiac disease can occur at any age; it affects all races; and it is the most common human genetic disease. Technically, it is not an allergy, but rather a genetically mediated autoimmune disease. Approximately 40% of Americans carry the celiac HLA DQ2 or DQ8 genes; thankfully, only 1% of the population ever has a triggering event that leads to activation of these genes and development of celiac. Celiac disease damages the villi in the small intestine, which compromises nutrient absorption. Many symptoms of celiac actually are symptoms of the multiple nutritional deficiencies secondary to malabsorption. The other major cause of symptoms is the autoimmune element, which accounts for the broad range of presentations of this disease, as any part of the body is fair game, with a special emphasis on the GI tract, nervous system and endocrine system.
According to the NIH’s recommendations, patients with the following conditions should be tested for celiac: chronic diarrhea, chronic constipation, thyroid disease, systemic lupus erythematosus, type 1 diabetes, liver disease, collagen vascular disease, rheumatoid arthritis, Sjögren’s syndrome, osteoporosis, migraines, infertility, obesity, GERD, irritable bowel syndrome, anemia, recurrent apthous stomatitis, chronic fatigue, pruritic dermatitis and psychiatric disorders like depression and anxiety. Due to the hereditary nature of this disease, all first-degree relatives, symptomatic or not, should be tested, because some patients are asymptomatic and are only detected through family screening. For pediatrics, the following conditions warrant screening for celiac: dermatitis, dental enamel hypoplasia, iron deficiency anemia refractory to oral iron supplementation, Type 1 diabetes mellitus, autoimmune thyroiditis, Down’s syndrome, Turner syndrome, Williams syndrome and selective IgA deficiency. Children with recurrent GI symptoms, such as diarrhea, abdominal distention, chronic constipation and vomiting, should also be screened.
Testing for Celiac
Testing involves serological tests followed by a biopsy of the small intestine. The challenging and ever-changing part of the celiac diagnostic workup is the serology. Most labs offer celiac panels that include antigliaden IgA and IgG, Endomysial IgA, and Tissue Transglutaminase IgA and a total IgA. There should soon be an in-office finger-stick test that will measure Tissue Transglutaminase IgA, IgG and IgM, and Anti Gliaden IgA from a drop of whole blood or serum. The gold standard for diagnosis still involves following positive serology with a multi-sample, small intestinal biopsy looking for characteristic villous damage. The North American Society for Pediatric Gastroenterology, Hepatology and Nutrition recommends children older than the age of three who have been on a gluten-containing diet for at least a year and who have any of the conditions listed earlier be screened with a TTG IgA and, if positive, be followed up with a small intestinal biopsy. The clinical response to the gluten-free diet is the final part of the diagnosis.
Implementing Corrective Actions
Once the diagnosis has been established, the next step is assessing the systemic and nutritional damage, followed by implementing the gluten-free lifestyle. I purposely use the word “lifestyle” because there are factors beyond diet that will affect a patient’s recovery. The first step is education as to what contains gluten, which, at first glance, seems like everything. Currently, wheat, spelt, kamut, triticale, barley and rye contain gluten. Oats don’t contain gluten, but are often contaminated in the fields and silos; therefore, they have not been considered safe. There now are sources of gluten-free oats, however. Where things get complicated is the hidden sources of gluten, often listed in ambiguous terms on labels. In January 2006, a new labeling law took effect that covers major allergens, including wheat, but not gluten. You still have to read the label for rye, barley or any source of malt that contains gluten. Practically speaking, many products on grocery store shelves are still not compliant with this labeling law, and it may take several years until this is a reliable source of information. There is also the issue of cosmetics, play-dough for children, and environmental exposure and contamination at home and at work. Several books cover these topics in depth, my favorite of which I have listed at the end of this article. I recommend patients read these books once they have a positive serology, and I answer any practical questions during office visits.
Monitoring recovery is usually done by rechecking the antilgiaden antibodies and the TTG IgA. I have learned that if a patient who was recovering well takes a turn for the worse, even if he swears he has not changed his diet, you must check for contamination. Time and again I have seen trace contamination ruin patients’ recoveries. Because of the intestinal damage, celiacs are more prone to other food allergies; often, these other allergies will need to be discovered and eliminated from the diet if the gluten-free diet alone is not resolving all symptoms. It is key to monitor and treat nutritional deficiencies aggressively the first year. Depending on the severity and length of their illness, often the adrenals are compromised. Once this is addressed, patients feel an improved quality of life. It is also beneficial to correct gut flora imbalances and heal their increased intestinal permeability.
About the Gluten-Free Diet
I have only dealt with celiac disease in this article, but naturopaths know many patients who benefit tremendously from a gluten-free diet that do not have celiac disease. Do these people have “seronegative” celiac, a gluten allergy, a wheat allergy, gluten intolerance or IgE-mediated wheat allergy? The body can react negatively to gluten in many ways. I try my best to rule out celiac, because of its implications to other family members and the up to 33 times higher mortality rate from intestinal and immune cancers than the general population. Without treatment, celiacs can develop complications like osteoporosis, anemia and seizures. The level of compliance with a life-long gluten-free lifestyle is much better when people are diagnosed with celiac disease, as opposed to just attempting a clinical trial of the gluten-free diet. It is important to do testing before beginning the gluten-free diet, because the diagnosis is inaccurate within weeks of a patient going gluten-free.
For more information, visit www.celiac.nih.gov for educational materials and services, current NIH research about celiac disease and additional information and resources, including an e-newsletter. My favorite book for doctors is “Celiac Disease, A Hidden Epidemic” by Peter H. Green, M.D. (It is too upsetting and technical for most patients.) My current favorite guide to the gluten-free lifestyle for patients is “Living Gluten Free for Dummies,” by Danna Korn. It is thorough, accessible, funny and very helpful.
Christine Doherty, ND, graduated in 1998 from Bastyr University and is in private practice in Milford, NH. She served on the New Hampshire osteoporosis advisory council from 2000 to 2003, and she is a medical advisor to the magazine Living Without, for people with food allergies and intolerance. She is the medical advisor to the southern New Hampshire gluten intolerance group and is a past vice president of the New Hampshire Association of Naturopathic Doctors. She speaks nationally on celiac disease at lay and medical conferences, has celiac herself and has worked with hundreds of celiac and gluten-intolerant patients from all over the world.