Instead of attending the Food & Nutrition Conference and Expo (FNCE), to satisfy continuing education requirements as I have for the past 10 years, I attend the International Celiac Disease Symposium (ICDS) in Chicago held in late September. It was a wonderful opportunity to hear and meet world-renowned celiac researchers, as well as other expert dietitians in gluten related disorders. Three days devoted to a subject I’ve devoted much time, energy and expense, learning about in the last decade.
We’ve seen some real advancement in the awareness of celiac disease and gluten disorders in the last 10 years and I anticipate more understanding, if not an actual cure of some kind found in the next 10 years. I will not get into that at this time but if you are interested in research updates on the probability, I would encourage you to hit the link at the very end of this article to the University of Chicago Celiac Center.
Optimistic? You bet, but what I am not so optimistic about is the continuation of the same old debate regarding who should and who shouldn’t be on a gluten-free diet. And now, the new question may actually turn out to be: Is it gluten or is it something else in our modern wheat and grains causing the problem?
A few of you may have noticed an underlying divisiveness growing in the gluten-free community. It seems a cast of doubt settles upon those who maintain a GF diet, without what used to be called a ‘gold standard’ celiac diagnosis. As a private practice dietitian, this can be rather frustrating working with many clients, who are in fact gluten sensitive but not celiac. It’s even more irritating when I see this cast of doubt inside my own profession. For many it is not a fad diet, it’s a lifesaver and should not be taken with a side of judgment.
So here is what I won’t be reminiscing: the ‘Wheat Belly’ or ‘Paleo diet’ bashing, which also took place in presentations by several “expert researchers” who will remain unnamed.
If you have ever attended a local Celiac Disease (CD) conference, you might imagine ICDS as the ‘Super Bowl’ of CD research presentations. The usual topics: diagnostics, genetics, associated autoimmune diseases, nutrition and diet, pathogenesis, and refractory sprue were discussed. For those of you who attended ICDS in New York in 2006, the conference has grown much larger with 3 days of 2 forums, a Clinical and Scientific. Aside from the pre-ICDS presentation on Sunday evening, attendees signed up for the clinical could not attend the scientific sessions, however the scientific attendees could choose to attend the clinical and in many sessions it was standing room only.
The research focus seemed to have taken a turn for the better this year, in my opinion. This was the year ‘Non-Celiac Gluten-Sensitivity’ (NCGS) came to the head table. It is no longer the nagging child vying for acknowledgement or confirmation. Yes Virginia, it does exist, (per Alessio Fasano and others) despite the denial of hardline skeptics and yes they were in attendance too.
If you’ve tested negative for celiac disease, and you are certain you react to something in gluten grains, attending a celiac conference in the past gave few answers. The anecdotal evidence was abundant and thankfully, the solid peer-reviewed, double blind research is finally catching up. Can I get a ‘hallelujah’?
I was pleasantly surprised that many of the latest peer-reviewed research articles being published were specifically about non-celiac gluten sensitivity. In fact, an impressive 19 new peer-reviewed studies were listed in the official conference program book, with ‘Gluten Sensitivity’ garnering its very own section.
Let’s revisit the official Oslo definition of gluten sensitivity or NCGS:
• Gut symptoms that improve upon withdrawal of gluten grains
• Celiac disease excluded after medical evaluation
-Absent CD genotype
-Normal biopsy of small bowel or negative serological testing for CD on a gluten containing diet
To reference an old phrase ‘We’ve come a long way baby’, with a long way to go in understanding exactly what causes a person to become gluten intolerant, after years of tolerance. As Detlef Schuppan MD, who specializes in celiac research stated, “We are here with NCGS as we were with celiac 20 years ago. We have a lot to learn.” He and others suggested that a better term for non-celiac gluten sensitivity might actually be “Non-allergy wheat sensitivity”.
Dr. Schuppan is convinced it is not actually gluten that is causing the problem in NCGS, but something else in wheat. That something else is — Amylase Trypsin Inhibitors (ATI). ATIs are natural occurring plant enzyme inhibitors that act like pesticides. Note: we’ve been naturally selecting wheat and cross-breeding wheat plants for pest resistance over the years. It would make sense that these enzyme inhibitors may have changed or increased as well over time per Dr. Schuppan. I am anticipating we will be seeing much more about ATIs in the coming years. This is the original study done in 2012 by Junker et al:
Wheat amylase trypsin inhibitors drive intestinal inflammation via activation of toll-like receptor 4. Junker Y, Zeissig S, Kim SJ, Barisani D, Wieser H, Leffler DA, Zevallos V, Libermann TA, Dillon S, Freitag TL, Kelly CP, Schuppan D. http://www.ncbi.nlm.nih.gov/pubmed/23209313
Want to know more about ATIs, you might be interested in this article: http://ultimateglutenfree.com/2012/12/natural-pesticides-wheat-role-gluten-sensitivity-celiac-disease/
FODMAPs & Fructose Sensitivity
Creating more confusion to the question –is it gluten or something else, a couple new studies about fermentable oligosaccharides FODMAPS, and fructose intolerance muddied the NCGS waters with the following study(s):
“No evidence of gluten-induced gastrointestinal-symptoms in self-reported non-celiac gluten sensitivity: A randomized controlled evaluation” Biesieski J.R., Newnham, ED., Rosella, O., Muir, J.G., Gibson, P.R. http://www.ncbi.nlm.nih.gov/pubmed/23648697
Dr. Jessica Biesiekski’s research, presented by Dr. Evan Newnham, takes a different approach to answering the question- is it gluten or is it something else. The study offers evidence of “Fermentable, Oligo-, Di-, Mono-saccharides And Polyols” (FODMAP)s being the culprit in IBS, and NCGS, in a small-randomized double blind study.
I must admit there seems to be increasing evidence that some people, despite being gluten-free, still suffer from gastrointestinal issues from fermentable carbohydrates and fiber. However, there are many who do just fine with FODMAPs and are still gluten sensitive.
On a side note: Dr. Schuppan offers critical comment based on the fact that the gluten protein used in this study was of a purified form, making it very low in ATIs, which could be the reason why there were little differences between the FODMAP weeks and gluten containing foods weeks. Dr. Fasano suggested that Dr. Biesiekski used only IBS patients, not Oslo-consensus defined NCGS patients, thus not a clear picture of the spectrum or overlapping, creating more questions of is it gluten or something else? Dr. Fasano is very clear about NCGS being a separate condition, something he admitted he was slow to embrace.
Another study, out of Brescia, Italy, distinguishing a difference between those with NCGS and those with IBS who are FODMAPs sensitive:
“Non celiac gluten sensitivity” (NCGS) is uncommon in patients spontaneously adhering to gluten free diet (GFD), and is outnumbered by “FODMAPs sensitivity”
Barbara Zanini, Roberta Basche, Alice Ferraresi, Chiara Ricci, Francesco Lanzarotto, Alerto Lanzini. (no link available at this time)
The conclusion: “The population of patients reporting intolerance to gluten containing food is a mixed population of gluten sensitive (NCGS) and of FODMAPs sensitive patients. NCGS is uncommon and is outnumbered by FODMAPs sensitivity in patients spontaneously adhering to GFD. “
However out of the 86 patients used in this study, 45 of them persisted on the GFD, I would hardly call that overwhelming FODMAPs.
One of the most interesting presentations, in my opinion, came during the pre-conference talk, given by Dr. Deanna L. Kelly Pharm.D., BCPP, professor of Psychiatry at the University of Maryland school of medicine. http://medschool.umaryland.edu/facultyresearchprofile/viewprofile.aspx?id=5219
Dr. Kelly discussed her findings from a very small pilot study on the gluten-free diet and schizophrenia. I recall Dr. Fasano mentioning this particular study several years ago at FNCE in Boston 2010:
“A gluten free diet in people with schizophrenia and anti-tissue transglutaminase or anti-gliadin antibodies.” Schizophr Res 2012;140:262-3. Jackson J, Eaton W, Cascella N, Fasano A, Warfel D, Feldman D, Richardson C, Vyas G, Linthicum J, Santora D, Warren KR, Carpenter WT, Jr, Kelly DL.
You can read the full text article for free at this link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3641835/
This pilot study consisted of only 3 people with active schizophrenia, testing positive for the tTg, tTg6, AGA and improved on the GF diet in 2 weeks.
The goal was also to evaluate antibodies to gliadin in 1,401 subjects, half with confirmed schizophrenia vs. controls using blood samples from the Clinical Antipsychotic Trials of Intervention Effectiveness (CATIE). In those with confirmed Schizophrenia, they found 5.5% positive for anti-tissue transglutaminase (tTg) antibodies vs. 1.1% positive in the controls. They used the older anti-gliadil IgA (AGA) antibody serum test with more telling results of 23.4% positive in those with schizophrenia vs. 3.1% in controls.
Dr. Kelly, suggests the recently discovered antibody; tTg6 may be a biomarker for neuro problems as well as in schizophrenia. It expresses primarily in the brain and is the autoantigen in gluten ataxia. See: Ann Neurol 2008 Sep;64(3):332-43. doi: 10.1002/ana.21450. Autoantibodies in gluten ataxia recognize a novel neuronal transglutaminase.
I am looking forward to another similar double-blind study in the works by Dr. Kelly, using the gluten-free and dairy elimination.
Which brings up another hot topic of research, microbes and gut flora. Additional buzz was created as research focus expands to microbes and gut flora along with celiac, NCGS and FODMAPs. I am confident we will be hearing and reading a lot more about microbes and the role they play in the development of both celiac and NCGS.
For those of you who could not attend ICDS in Chicago, for a fee of $45 you can replay both the clinical and scientific programs of the conference at this link. http://icdsvideos.cureceliacdisease.org/ All funds go to celiac disease research at the University of Chicago Celiac Center.