In 1994 I was diagnosed with celiac disease, which led me to create Celiac.com in 1995. I created this site for a single purpose: To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives. Celiac.com was the first site on the Internet dedicated solely to celiac disease, and since then it has become an invaluable resource to people worldwide who seek information about celiac disease and the gluten-free diet.
In 1998 I created The Gluten-Free Mall, Your Special Diet Superstore! which was also another Internet first—it was the first gluten-free food site to offer a shopping cart-style interface, and the ability for people to order gluten-free products manufactured by many different companies at a single Web site.
I am also co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.
After a diagnosis of Celiac Disease is made, additional follow up tests are recommended immediately after diagnosis and on an ongoing basis. These include:
Research from Stanford University School of Medicines Celiac Management Clinic is noting continued absorption problems with many individuals who are on a gluten free diet. A 72 hour quantitative fecal fat test and a 25-gram xylose sugar absorption test can help diagnose continued absorption problems.
Healing progress on the gluten-free diet may be monitored by re-testing whichever diagnostic blood test was initially highest, at an interval of 6 - 12 months. Children are likely to heal within a few months; adults may take a few years, and some may never totally heal.
Note: Calcium and Iron status will improve in most individuals even without supplements once the intestine heals. Several doctors recommend NOT prescribing drugs such as Fosamax and Evista until after the intestine heals and more calcium is being absorbed from the diet.
Most individuals will experience a significant decrease of symptoms within a few weeks or months of starting a gluten free diet. However, some individuals may continue to experience significant digestive problems or may have a relapse of symptoms. Some possible explanations are summarized below:
Look for any possible sources of gluten exposure. Binders in medication, cross contamination, misunderstanding of the strictness required of the diet, etc. should be explored. Repeat blood tests might give an indication of continued gluten exposure; however these may not be sensitive enough to note low level exposure.
Especially during the healing phase of celiac disease, intolerance to lactose, a protein found in dairy products, may be seen. Enzymes needed to digest lactose are manufactured by the intestinal villi, which have been damaged by exposure to gluten. Often once the villi have regrown, symptoms of lactose intolerance will subside. Testing includes Lactose H2 breath testing. Suggested treatment includes using an over-the-counter lactose enzyme when ingesting dairy products. Re-colonizing the small intestine with beneficial bacteria (see probiotics, below) is also recommended.
A study by Villanacci, et. al, published 8/28/2006 in the American Journal of Gastroenterology noted that 44% of individuals diagnosed with celiac disease tested positive for Helicobacter Pylori at the time of, or within 1 year of their celiac disease diagnosis.
In a report published in the American Journal of Gastroenterology, Vol. 98, No. 4, 2003 of 15 persons with continuing symptoms, 10 showed evidence of overgrowth of bacteria within the small bowel. Testing included Lactulose H2 breath testing. Suggested treatment includes the non-systemic, prescription antibiotic, Rifaximin (800 mg. per day for one week). Note that the antibiotic used is called Rifaximin in England and Xifaxam in the U.S. Digestive function should also be evaluated as the underlying cause of SBBO.
Some individuals report continuing symptoms due to overgrowth of yeast. Testing includes blood antibody testing for Candida. Suggested treatment includes ½ tsp Nystatin powder (mix with water), twice a day and 200 mg Ketoconizole once per day for 2-3 months. Monthly liver function testing during treatment is recommended. Nystatin powder may be ordered, by prescription, through pharmacies which offer custom compounding of medications. Digestive function should also be evaluated as the underlying cause of yeast overgrowth. Dietary changes may also be considered.
Additional IgG food sensitivities may be seen. An IgG sensitivity is different from the IgE allergies most allergy doctors check for. Common food sensitivities include dairy casein, corn, soy and eggs. Treatment includes avoiding the food, and food rotation. There are some reports of a reduction of food sensitivities when digestive function improves.
Multiple problems with digestive function may be found. A complete evaluation should be done. One source for a comprehensive stool analysis may be obtained, by mail and by prescription.
Increased intestinal motility may contribute to continuing diarrhea. Try reducing motility by using a fiber supplement like Benefiber or Citracel. Particularly in individuals who have had their gall bladder removed, consider Cholestid, a prescription drug used for lowering cholesterol, which may also slow motility. It acts by binding to irritating bile salts.
Low stomach acid (hypochlohydria) may interfere with the effectiveness of ones own digestive enzymes and may create an environment that encourages yeast or bacterial overgrowth. Additional information may be found in the book "Why Stomach Acid is Good for You" by Wright & Lenard. Testing may be done using the Heidleberg Capsule or Gastrocap tests. Supplemental Betaine HCl, bitters, digestive enzymes and probiotics, available at a health food store, may be helpful.
Probiotics are very helpful for regaining the balance of the intestinal flora. Use ones that have multiple kinds of bacteria. The ones found in the refrigerated section of health food stores will have the highest level of bacteria. Kefir, raw kimchee and raw sauerkraut, also found in the refrigerated section, have high levels of active cultures.
Pancreatic enzymes assist with more complete digestion, discouraging unhealthy bacterial growth. Recommendations have been made for the vegetable based enzymes Which may be ordered through the internet or found in health food stores. Animal derived enzymes are available by prescription. Experiment to see what works best. To avoid heartburn, start by sprinkling ½ of a capsule on food & increase as needed and tolerated. Be sure to carefully check the Gluten-Free status of all enzymes. It is common for the Maltase to be made from barley.
Some individuals do not digest carbohydrates and sugars well. The undigested carbohydrates encourage the growth of harmful yeasts and bacteria. More information on a diet low in carbohydrates may be found in the book "Breaking the Vicious Cycle" by Gottschall. She recommends eliminating all complex carbohydrates to kill off the bad bacteria.
Check for parasites and other bacterial problems, including Giardia lamblia and Ascaris lumbricoides. Just because an individual has celiac disease, doesnt mean they cant have the bugs that a normal person with diarrhea may have!
At least 1/3 of the people diagnosed with celiac disease as adults will also have another autoimmune disease. Many report a significant improvement in their other autoimmune disease after beginning a gluten free diet. However, some individuals with celiac disease may develop other autoimmune diseases even after beginning a gluten free diet. Watch for Type 1 diabetes, liver, thyroid, pancreas and adrenal diseases, peripheral and central nervous system damage, connective tissue and other rheumatoid inflammations.
Ms. Anderies also serves as a member of the Denver Metro Chapter of CSA/USA Medical Education Committee