Gluten summitGluten Summit Speakers Series: What Did They Say?

Up to now in her series reports, Micki Rose has focused on the generalists: the people with the overall view of gluten related disorders. Now, she starts to look at the field specialists: the neurologists, paediatricians, immunologists and gastroenterologists at the clinical sharp end who, hearteningly, agreed in approach much of the time.

First up: Dr Rodney Ford, gastroenterologist, paediatrician, gluten specialist; Dr David Perlmutter, neurologist, research scientist and Dr Daniel Amen, psychiatrist, brain imaging scientist.

Dr Rodney Ford, gastroenterologist, paediatrician, gluten specialist

Ford was the first gastroenterologist to really talk about non-coeliac gluten sensitivity (NCGS). He describes gluten illness as a stealth disease that takes a huge toll on the body, has severe effects and could be avoided if we just took gluten out of our diets early enough. He says we can no longer play ‘gluten roulette’ with the knowledge we now have about gluten.

He sees children with varied symptoms, but mainly gastro-intestinal (reflux, abdominal pain, vomiting, bowel changes), skin (eczema, rashes, psoriasis, urticaria) and neurological (migraine, ADHD, behavioural changes).
Controversially, he is particularly concerned about the ‘glutening’ of babies in the womb and during breast-feeding. He calls for routine gluten testing of mums, preferably pre-conception, and a gluten free diet (GFD) given to protect their unborn babies if antibodies are found.

Diagnostically, he looks for Coeliac Disease (CD) first. If that is negative but he finds gliadin antibodies positive, he gives a GFD trial for 3 months. He says most gluten sensitives do not have positive antibodies in his experience. If blood tests are negative and there is no reason found for symptoms, he suspects gluten sensitivity and he trials a GFD for 3 months anyway. He says he ‘ignores’ colleagues who berate him for this, but clinically his job is to get the children well and he finds it works the majority of the time so he continues to do it despite the vilification.

The GFD is no quick fix, though, and he explains it could take up to 10 years for the immune complexes to calm down. In people with severe neurological damage, he feels the antibodies are unlikely to ever go completely.

Gluten Free ‘Danger’ Is Laughable

He was scathing about people who say there is danger in the GFD without positive test results, and calls clinicians saying this ‘stupid and unthinking’.  This was a repeated theme throughout the summit, actually, with most saying it is a laughable and very misleading argument. He says his experience is more that people eat much more healthily as they learn about food issues, that grains are not very nutritious and people often eat more nutrient-dense food as replacements.

From clinical experience, he agrees with many other of the NCGS commenters that even the tiniest ingestion will scupper healing. He doesn’t believe that the recent 20ppm ruling is low enough and that manufacturers are ‘getting away with it’. He is frustrated that the 20ppm level is based on gut changes, but there is enough suspicion that the trigger point is lower for neurological gluten problems.
He agrees with others that any amount is enough to trigger the memory B cells, causing a reaction that can then last 3-6 months. His book is actually called Gluten Zero, which shows you what his views on the ppm might be!

My worry with this, though, is how are we supposed to get to gluten zero; I think it is a practical impossibility and this doesn’t bode well for healing, does it?! He is calling on manufacturers to address the cross-contamination issue and stop feeding gluten to people who think they are on a GFD but, in practical terms, are not. I applauded him for that one; I do find it very misleading and explain daily to people that they are on a very low gliadin diet, not a 100% gluten free one.

Key Practical Message:

Check for gluten antibodies and remove gluten during pre-conception, pregnancy and breast-feeding if found. If in doubt with a poorly child, trial a GFD.


Dr David Perlmutter, neurologist, research scientist

Perlmutter thinks we have ‘vastly underestimated the effect gluten sensitivity is having on the human race’. He feels that gluten is probably one of the most key factors in neurological disease because of the influence it has on zonulin and leaky brain and gut barriers allowing cross-reactivity antibodies which can then cause inflammatory and autoimmune damage.

He has published studies showing the link between gluten sensitivity and brain antibodies, which corrected following a GFD. He reminds us that the tissue transglutaminase 6 (tTg6) antibody to gliadin is found commonly in neurological disorders and that tTg6 is also part of the blood brain barrier structure, not just the gut barrier, so is implicated in leaky brain, not just leaky gut. He says the body barriers are key and suggests any neurological treatment must include rebuilding them, including the removal of gluten and dairy because of their effect on the zonulin.

Lowering Inflammation and Insulin

Dr Perlmutter believes that inflammation is the true cause of much chronic illness and that insulin and blood sugar factors are becoming really key in neurological disorders too – he reminds us that Alzheimer’s is now commonly termed Diabetes Type 3.

He is convinced that the problem is our current high carb, low good-fat diet, which is so at odds with the diet we evolved on. His view is that we should be eating a low carb and high good-fat diet to keep cell membranes and nerve cells strong. High blood sugar causes glycation which results in inflammation and production of damaging free radicals.

Good fats include olive, coconut, avocado, grass fed beef, wild fish, nuts and seeds and he recommended adding loads of vegetables and some fruit to that as a core diet. This was a common diet theme in practitioner lectures, actually, with many of them finding a grain free Paleo type approach the best for healing in-clinic, rather than the traditional GFD. Of course, I was pleased to hear that – Truly Gluten Free, no less! Removal of the grains is a double-whammy which automatically lowers the carbs and removes the gluten.

Perlmutter ended his session by calling for physicians in any field to consider gluten in chronic, idiopathic disorders, especially neurological ones, and to trial a GFD with or without positive testing. He says we have a drug-free, easy approach to use for patients in diet, but that he is ‘at a loss to know why, despite there being much research to back it up, the approach is being very largely ignored’.

Key Practical Message:

Eat a low carb, higher protein, good-fat anti-inflammatory diet to support nerves and membranes, rebuild body barriers and look especially for tTg6 in testing; do not rely on finding normal coeliac markers before you act.


Dr Daniel Amen, psychiatrist, brain imaging scientist

Dr Amen is a classically-trained psychiatrist, a Fellow of the American Psychiatric Association in fact, who ‘got fed up of making people worse’ and switched focus to supporting brain function rather than using toxic drugs to suppress or change it. Still today he is pilloried and criticised for that approach. He uses SPECT (single-photon emission computerized tomography) brain scans to look at blood flow and activity primarily rather than using traditional MRI scans and is up to 80,000 scans on patients from 93 different countries so far, so has a lot of data to call upon.

The Importance of Blood Flow

Dr Amen explains that they see consistent scan changes in different conditions. The primary problem in GRDs tends to be hypo-perfusion: a lack of blood flow to the brain when gluten is eaten. White lesions are also seen and have been shown to reverse on a GFD.

In certain conditions, he says the problem is too much blood flow and those people tend to be hypersensitive to stimulus (eg. light, noise) and can be rigid or inflexible if things don’t go their way. Other people can have overactive brains eg. obsessive people, and others underactive, as in ADHD, he says. The treatment aim is to regain balance.

We Can Change Things!

He pointed out that we used to believe the brain was set at birth, but have realised in the last decade or so that we can influence it. Neural plasticity is an emerging science showing how the brain can make new neurons and new pathways; we can train it. We can affect it positively or negatively. That was a key message for me: a treatment approach maybe for hyper-sensitives who can’t tolerate meds, supplements or dietary measures? Of course, I am now investigating and trialling neuroplasticity methods!

The first thing Amen advises is to stop poisoning our brains with chemicals, food allergens, high blood fats, high blood sugar, injury and poor hormone balance particularly. He knows that giving up the sugar, fats and food allergens is really hard, not least because the allergens are addictive!

Next, we have to feed the brain: it uses 20% of the oxygen we breathe and 25% of the calories we eat. As well as physical exercise, he recommends a diet 70% plant and 30% high-quality protein and healthy forms of fat.

Finally, Amen suggests using neuroplasticity techniques to change your thought patterns, do mental workouts (he says table tennis is excellent), help other people (a very positive act) and work on getting well in a positive peer group, which has a stronger brain effect than doing stuff on your own.

Key Practical Message:

You can influence your neurology. Learn to care about your brain as you would your wrinkles, even though you can’t see it! Turn negative thoughts and experiences into positives as much as you can. Realise neither your brain, nor your genes are set in stone; you can change them.

To read the introduction to the Gluten Summit, see here. Catch up with the mini-series 1, 2, 3, 4 and 5. And to read the conclusion see here.

For more from me and on gluten related disorders generally, see my TrulyGlutenFree site.

August 2014



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