Following the December 2012 webinar "You Ask, We Answer: 60 Minutes with Top Celiac Disease Researchers," NFCA worked with panelist Daniel Leffler, MD, MS Director of Clinical Research, The Celiac Center at BIDMC, Director of Quality Assurance, Division of Gastroenterology, Beth Israel Deaconess Medical Center to address the remaining questions from the live airing. The following guest post contains Dr. Leffler's responses.
Q. What is the best and most reliable test used to diagnose and manage gluten ataxia?
A. Unfortunately, standard celiac blood tests are not as accurate in gluten ataxia as they are for celiac disease. Other tests are under development but are not clinically available at this time. Currently, gluten ataxia is a clinical diagnosis made when there are consistent symptoms, no other explanation and response to a gluten-free diet. Positive celiac antibodies or evidence of enteropathy on small intestinal biopsy are very supportive but do not conclusively diagnose or exclude gluten ataxia.
Q. Can a person get a biopsy-confirmed celiac diagnosis and yet be misdiagnosed?
A. Yes, although celiac disease is the most common reason for the pathology changes seen in the small intestine (villous atrophy and increased intra-epithelial lymphocytes), there are many other causes including drugs, infections and Crohn’s disease. Individuals are most commonly misdiagnosed when they have a positive biopsy but negative celiac antibodies (tTG, DGP or EMA) or they have only increased intra-epithelial lymphocytes on biopsy but no villous atrophy.
Q. Can a person be diagnosed with other conditions after being diagnosed with celiac disease, such as IBS or a fructose malabsorption? Similarly, persons diagnosed with celiac disease and who have been gluten-free for three years but still have health problems, such as fatigue, bloating, and abdominal pain, may benefit from the answer below.
A. Yes, having celiac disease does not exclude other GI conditions, the most common of which is IBS. If you have ongoing symptoms despite being on a strict gluten-free diet, known clinically as Non-Responsive Celiac Disease, you should talk to your doctor about evaluating for other conditions.
Q. Is fecal transplant therapy being explored as a resolution for celiac disease? For example, rebalancing and supplying missing intestinal flora as with Ulcerative Colitis.
A. There is active work looking at probiotics in celiac disease, which has had somewhat mixed results. I am not aware of any trials ongoing looking at fecal transplant for celiac disease and most evidence suggests that this therapy is most appropriate for colonic diseases rather than small intestinal diseases. However, this may change depending on the results of ongoing Crohn’s disease trials.
Q. When will we know more about the long-term complications of non-celiac gluten sensitivity (NCGS)?
A. Since NCGS only began being diagnosed recently, and there are no blood tests for this condition, it is impossible to look at people who had this condition many years ago, as we can with celiac disease. This means that it will take many more years before we are likely to have good data on long-term complications of NCGS. On the other hand, in most other conditions including celiac disease and inflammatory bowel disease, long term complications are linked to a degree of inflammation. Since there appears to be minimal if any inflammation in NCGS, it is likely that long-term complications are minimal as well.
Q. Are there any dangers to a false diagnosis of NCGS?
A. Since the only treatment for NCGS is a gluten-free diet, as long as you receive proper nutritional counseling and keep a healthy balanced diet, there is no danger to this treatment. However, it is important to recognize that many gastrointestinal diseases present with similar symptoms, so the real danger is that in assuming a person has NCGS, they are not evaluated appropriately and a more serious illness is missed and allowed to progress untreated.