Update! June 12, 2014
The science on gluten sensitivity is evolving and we're learning new information on the condition regularly. New research suggests that gluten alone may not be responsible for the symptoms produced by the condition currently called gluten sensitivity. Instead, it is showing that perhaps FODMAPs, a group of poorly digested carbohydrates, may be the cause of the symptoms instead. It is also important to note that wheat, barley and rye - gluten-containing grains - are all high in FODMAPs.
NFCA encourages you to learn about the low-FODMAP diet by downloading the free webinar archive of "Is Gluten Really the Problem? The Role of FODMAPs in Gluten-Related Disorders," featuring Dr. Sue Shepherd, the creator of the low-FODMAP diet.
Access the webinar slides and recording.
Autoimmune and Neurological Conditions
Research has found that celiac disease is associated with other autoimmune disorders and neurological conditions like headaches and peripheral neuropathy. When it comes to non-celiac gluten sensitivity, very little is known about if and how it may relate to these conditions.
During NFCA’s webinar “You Ask, We Answer: 60 Minutes with Top Celiac Disease Researchers,” the expert panelists provided an update on what we do and do not know about non-celiac gluten sensitivity, and what they expect research to uncover. The responses below have been either transcribed from statements by Dan Leffler, MD, MS, of the Celiac Center at Beth Israel Deaconess Medical Center in Boston, and Joseph Murray, MD, of the Mayo Clinic in Rochester, MN or responded to following the webinar, as there were unanswered questions during the live programming due to a lack of time. This is indicated in each question.
Does having non-celiac gluten sensitivity increase your risk of developing other autoimmune disorders?
Dr. Leffler: (transcribed) We don’t know 100%, but I would say that the fact that it doesn’t appear to share the genetic predisposition for celiac disease (that HLA-DQ2 and DQ8 which seem to be autoimmune predisposing), suggests that [non-celiac gluten sensitivity] is not likely to be as associated, if at all, with other autoimmune conditions. And I think, again, there’s been very little work done in this area, but the little work that has been done sort of suggests this as well – that there’s not an increased risk of autoimmune diseases in the non-celiac gluten sensitivity picture, but I think that clearly this is still a work in progress.
[During the webinar, a spot poll revealed that 8% of attendees reported having non-celiac gluten sensitivity and an autoimmune disorder. Dr. Leffler was asked to address this.] Dr. Leffler: Autoimmune conditions of various sorts are pretty common in the general population, thyroid disease being the most common. But if you add them all up, 5-10% of the general population will have some autoimmune disease, so the 8% of people in the audience with non-celiac gluten sensitivity really is about population level.
We know that peripheral neuropathy can be associated with celiac disease. Is there a similar relationship between non-celiac gluten sensitivity and other neurological conditions?
Dr. Leffler: (transcribed) In terms of the other gluten-related disorders, especially gluten sensitivity and peripheral neuropathy, I think that’s just a complete black box. We don’t really know anything about if or how gluten sensitivity may be related to neurological manifestations.
Dr. Murray: (transcribed) Non-celiac gluten sensitivity and its relationship to these other entities is I would say scientifically unproven though highly suspected. Gluten ataxia could be one where there’s a little more data to support than the others, though I think as Dr. Leffler pointed out, we don’t know what the nature of the association is. And by association doesn’t imply causation. It could easily be that someone has an injury to their brain or immune system may see that react in a way that looks like a reaction to gluten, but it may not be primarily caused by gluten. So these are very difficult issues.
The question was answered via e-mail to address the remaining questions from the live webinar airing.
When will we know more about the long-term complications of non-celiac gluten sensitivity?
Dr. Leffler: (post webinar) Since non-celiac gluten sensitivity 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 non-celiac gluten sensitivity. 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 non-celiac gluten sensitivity, it is likely that long-term complications are minimal as well.
Visit NFCA’s Webinar Archives to listen to the full recording.