In this landmark study researchers demonstrate that this major neurological disorder, affecting up to 1% of UK school children, may be largely a manifestation of Non Coeliac Gluten Sensitivity.
I’ve not been writing about gluten and gluten-free diets for a while, but that’s not because I’ve realised it was all a silly mistake and gone back to eating bread. No way! Despite what the media might lead you to believe there has been no let up in research demonstrating the ever wider scope of the ‘gluten iceberg’ which is now confirmed as causing pathology well beyond classical coeliac disease. The official term Non-Coeliac Gluten Sensitivity was coined in 2010 (NCGS) in an attempt to grapple with the burgeoning research in this field. This new paper demonstrates that NCGS has real world applications in a major intractable disease.
Tourette syndrome is a neurological disorder characterised by repetitive involuntary movements or speech known as tics. Sufferers also commonly exhibiting obsessive compulsive disorder (OCD). Tourette’s is now believed to affect up to 1% of school age children in the UK [Stern, BMJ 2005].
The condition is very difficult to live with leading to a significant reduction in quality of life. My own experience of a Tourette’s suffer was a man from whom I was purchasing a washing machine. Throughout our conversation his speech was littered with uncontrolled profanities: at least one every sentence. To try and curtail them he would screw up his face in resistance, trying to muffle the expletive which stubbornly managed to squeeze out. The poor man was in a state of permanent social embarrassment compelling him to keep apologising. All this whilst carrying out suchday-to-day tasks. The stress is unimaginable.
For most sufferers Tourette’s is a life long, incurable condition, and because twin studies have shown that there is a large inherited component there is a sense among the medical profession that diet is unlikely to play a role. Psychotropics are routinely prescribed to ameliorate the tics but these come with a heavy toll of side effects.
This new study, then, is absolutely remarkable for achieving marked reduction in tics and OCD both in children and adults through the application of a gluten-free diet. Who’d have thought it? These far-sighted researchers looked into this possibility because of the range of neurological symptoms seen in Non-Coeliac Gluten Sensitivity (NCGS) patients. Well done to the Spanish research team for considering this – they are streets ahead in their thinking than of the typical GPs in Britain who routinely dismiss dietary interventions out of hand. Yet unlike our GPs these researchers are aware of the pioneering work carried out 15 years ago here in the UK by Hadjivassiliou at Sheffield Hallamshire hospital. In this paper they quote him thus:
“Gluten sensitivity can be primarily and at times exclusively a neurological disease. The absence of an enteropathy [gut condition] should not preclude patients from treatment with a gluten-free diet. Early diagnosis and removal of the trigger factor by the introduction of gluten-free diet is a promising therapeutic intervention”– Hadjivassiliou at Sheffield Hallamshire hospital (my edits in brackets)
The researchers enrolled 29 patients with Tourette’s (23 children and six adults), and all of them followed a gluten-free diet for one year. Their tics, OCD and self-assessed quality of life scores were determined at the beginning and end of the study. A questionnaire was used to identify typical NCGS symptoms and these indicated that many of the patients potentially fell into this category.
After one year there was a huge improvement in neurological symptoms (tics and OCD) as well as associated NCGS symptoms (such as allergies, headaches, dermatitis, anaemia, sleep, behaviour and dietary disorders), along with a marked reduction in associated medication use.
Average reductions in scores for the various assessed symptom averaged between 50% and 80%.
It was notable that the children improved more than the adultsm: an observation that the researchers speculate might be because the adults had been eating gluten for longer and so had incurred more permanent damage. Interestingly, several patients reported marked flare-ups in their tics when they had made a slip up in their diet leading to gluten contamination.
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What the researchers had to say about NCGS
There are some very good passages in the paper which are worth all of us bearing in mind, because gluten sensitivity extends out into the population in all kinds of unexpected ways. When viewed through the lens of just-another-fad-diet going gluten-free can seem like a middle-class lifestyle choice with little scientific basis, but the research suggests otherwise, and these authors know it:
People with NCGS usually exhibit a variety of associated symptoms such as headaches or migraines, “brain fog”, fatigue, fibromyalgia, joint and muscle pain, leg or arm numbness, tingling of the extremities, dermatitis (eczema or skin rash), allergies, atopic disorders, depression, anxiety, anaemia, iron-deficiency anaemia, folate deficiency, asthma, rhinitis, eating disorders, or autoimmune diseases. Among the extra-intestinal manifestations, NCGS has been implicated in some neuropsychiatric disorders, such as schizophrenia, autism, peripheral neuropathy, ataxia, ADHD, mood swings, sensory symptoms, disturbed sleep patterns, and hallucinations (“gluten psychosis”)
And this paragraph highlights emerging discoveries too:
Many coeliac patients or those with undiagnosed NCGS underestimate their multiple and frequent discomfort from digestive and more general causes because they have grown accustomed to living with a state of chronic poor health as though it were normal. They are only able to recognise that they really did have symptoms related to the consumption of gluten when they start the GFD and the improvement becomes obvious
The disproportionately common occurrence in patients with [Tourette’s] of immunologically determined illnesses, such as allergic processes, rhinitis, asthma, dermatitis and conjunctivitis, frequently with raised IgE and a positive family history of autoimmune diseases has been reported. Likewise, the presence of migraines, autistic spectrum disorders, anxiety, depression, sleep disorders, behavioural problems and hallucinations have frequently been noted
Let’s hope that the GPs and neurologists, as well as the allergy specialists and immunologists pay attention to this landmark study, and the rest of the NCGS research out there. But don’t hold your breath on that one. It might seem incredible, but only a very few functional medicine practitioners like me actually read and then employ the research in this area, which enables me to get some remarkable results.
As one professor of medicine told me, even your local hospital specialist has only read a handful of key papers relevant to his specialism and most of those are over 20 years old. Indeed MedPage today recently pointed out that almost no medics read medical journals anymore. Can you believe it? Well you better believe it because your health and the health of your loved ones depends upon it.