Research and Advocacy

TILTed Gluten Sensitivity

A recent Bday owl cake. It had to be  gluten free, among other things, despite the fact that we have no celiac diagnosis.

A recent Bday owl cake. It had to be gluten free, among other things, despite the fact that we have no celiac diagnosis.

I’ve been trying to stay more up to date on scientific articles that relate to health problems that challenge our household. We’ve got both chemical and food intolerance problems in our TILTed home. Some are allergies we were born with, but most are sensitivities that have developed, leaving us in the limbo of unknown disease mechanisms, jumbled acronyms, diagnoses by default, and questionable treatments. I have a science background, so scientific articles do not usually intimidate me but I am limited in time (remember, the mom and tutor part) and mental clarity (some days are still foggier that others). Today, however, I’ve got an article to share. It caught my attention because it contains references to both TILT and NCGS. Here’s the details and link to the original article.

Gastroenterology Research and Practice
Volume 2014 (2014), Article ID 293206, 6 pages
Review Article
Gluten Sensitivity Presenting as a Neuropsychiatric Disorder
Stephen J. Genuis and Rebecca A. Lobo
Faculty of Medicine, University of Alberta, Edmonton, AB, Canada T6K 4C1,
Department of Family Medicine, University of Alberta, Edmonton, AB, Canada T6G 2C8
Received 20 October 2013; Revised 25 December 2013; Accepted 2 January 2014; Published 12 February 2014
Academic Editor: R. Eliakim

The title of this article, unfortunately, contains a problem word for me. So let’s start there. Neuropsychiatry is a branch of medicine that deals with mental disorders attributable to diseases of the nervous system. It covers a wide range of illnesses, including the study of Parkinsons, ataxia, autism, ADD, and OCD. However, the word psychiatric triggers a strong negative reaction for me and, I believe, many others. I do not want that term used in connection with MCS or TILT because of the cultural inference that come with it, regardless of how inaccurate those connotations are. The general public either hears or reads psychiatric and thinks “all in their heads”.

Lets all try to remember that these authors are discussing a disease of the nervous system and not “all in their heads”. OK, moving on. This is a review article, which means the authors have not performed any new trials or experiments or population studies. They have done one case study, reviewed the applicable literature, and proposed a possible mechanism. There may be nothing ground breaking here, but it’s nice to see peer reviewed scientific journals (this one is Gastroenterology Research and Practice – scintillating title, yes?) using the phrases TILT (Toxicant Induced Loss of Tolerance), SRI (Sensitivity Related Illness), and NCGS (non celiac gluten sensitivity) as valid terms. More importantly, and mentioned in this article, the scientific community needs to dedicate more resources to further the diagnostic criteria of these terms.

The case study here involved a woman who has a long history of auditory and visual hallucinations which are eliminated as long as she maintains a gluten free diet. The neurological symptoms return with reintroduction of gluten. The authors present their case as an example of a non celiac gluten sensitivity (NCGS) and discuss those ramifications within the literature’s continued struggle to agree on etiology and definition of NCGS, especially considering it’s increasing prevalence. So far, there have been no consistent or demonstrable markers in the usual diagnostic lab (biopsies, anti-gliadin, anti-tissue transglutaminase, and anti-EMA titre). But the condition does exist, as we know, and the scientific community is beginning to have enough evidence for that. For example, in reviewing the pertinent scientific literature the authors mention a psychiatric assessment and gluten challenge that compared celiac disease, non celiac gluten sensitivity, and a control group. The results show no increased evidence of somatization or placebo effect in the NCGS patients. Additionally, a 2012 poll shows a greater than 60% acceptance of NCGS by medical professionals as a disease.

The authors here discuss a potential pathophysiological mechanism which simply links intestinal inflammation, malabsorption, nutritional deficiencies, and impaired neurotransmitter metabolism. They also explain sensitivity related illness beginning with toxicant burden bioaccumulation leading to toxicant induced loss of tolerance, then environmental triggers leading to immune reaction release of antibodies, cytokines, and interleukins which culminates in multi system clinical disease. The authors state, “This mechanism of disease has recently been described and discussed in the scientific literature, whereby accumulated toxic insults often resulting from adverse chemical exposures lead to hypersensitivity and impaired tolerance of the immune system (known as toxicant induced loss of tolerance or “TILT”). With growing attention in the medical literature to the escalating problem of toxicant exposure and bioaccumulation within contemporary society, this mechanism of illness has become compelling indeed. Notable groups such as the World Health Organization and the Centers for Disease Control have recently drawn attention to the reality of ubiquitous toxicant exposures and the chemical erosion of human health associated with toxicant accrual within the human body.” Follow the initial link to the full article if you wish to see the ten other articles referenced from just this one passage.

None of this is news to me, or you, probably. The news is that it is in the news, in journals as niche as Gastroenterology Research and Practice. I know that my gluten sensitivity developed after a chemical injury which resulted from an exposure that would not have harmed most people, only canaries like me primed for the domino effect. Similarly, my daughter developed gluten sensitivity as a result of a parasitic infection, one that most people could have eradicated easily without medical intervention. However, thanks to her genetic predisposition, that infection stuck around and lead to a host of systemic inflammation problems like food intolerances. I knew all this because I’ve lived it; symptoms, patterns from a health journal, diagnostic testing, a lot of reading on the subject, medical opinions, fellow patient’s stories and a bit of common sense. I understand this problem in my language and through the format of my life. However, it is nice to see the scientific community beginning to discuss the pattern in their language and format. Coming up in my next post, I’ve got more to say on the subject of how frustrating the scientific method and publishing process can be for those of us in the invisible illness community. But for now, let’s enjoy the small silver lining brought to us by Genuis and Lobo!

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