Gluten Related Disorders: Our Knowledge Expands

Micki Rose reports on the e-summit earlier in 2014.

The gluten medical field is moving at an incredible pace currently and it is pretty tough to keep up! As many of you know, I started researching why coeliacs weren’t healing well enough about four years ago now. The result was the TrulyGlutenFree website to raise awareness and document what I was learning, then the Barrier Plan evolved to answer the need for a healing approach that extended much further than ‘just’ following a traditional gluten free diet (GFD). The site mushroomed along with the research field.

That the field of gluten illness is so active currently is the good news. What isn’t so good is watching the info trickle at less than snail speed down to actual clinical use in health professionals’ offices, both mainstream and complementary. I was really chuffed at the beginning of this year to see Dr Tom O’Bryan, a specialist in gluten disorders, organise an esummit with twenty-nine of the world’s top gluten researchers and clinicians all being given a chance to voice their thoughts, experiences and advice in recorded interviews.

It’s not often that I gasp, shout and cheer at my screen but I found myself doing so repeatedly through this remarkable online summit. I did do a few wrinkle-noses, too, just in case you were wondering.

A Seventeen Year Wait

On average, it takes seventeen years from papers being published to that knowledge being used in clinical offices to benefit all of us. Even though (first gasp) some of the studies being referenced during the summit were first published in the 50s and 60s, there has been an explosion of gluten research particularly in the past five to ten years.

Dr O’Bryan didn’t think we should have to wait as long as we did for the coeliac research to reach us usefully, hence his stated aim was to move our clinical knowledge about gluten illness forward by at least five years. Hoo-flippin-ray for that. It can’t come fast enough in my opinion.

I have been totally overwhelmed over the last four years by people desperate to know how to test for gluten-related disorders effectively (GRDs, our new official term, note) and what to do to help themselves heal when the GFD – strict as you like - wasn’t doing it for them. And what about all those who know that gluten is an issue for them symptomatically but the docs swear there is no problem – how do they find out that non-coeliac gluten sensitivity even exists and get a diagnosis?

The need is clearly there. And, actually, so are a lot of the answers, although we still have a way to go obviously as new info comes out almost daily. Much of this is still very controversial, of course: we are still learning.

I knew the summit was going to be a goodie when I saw the speaker line-up. How often do we get to hear from the people who are actually leading the way in a medical field? Let’s face it: most of the researchers don’t talk to the public very often so it was great to be able to hear what they thought straight from the horse’s mouth, so to speak. Much of the discussion was peppered with research references; part of Dr O’Bryan’s remit was to show that this is not conjecture but is backed up by published, peer-reviewed research and clinical evidence from some pretty experienced people.

Teasing Out The Practicals

With so many speakers, there was a LOT of info to sift through. I listened to every interview and then spent the first few months of this year teasing out the clinically-useful stuff we can implement on a day to day basis to encourage proper diagnosis and healing. As a result, I have rewritten the TrulyGlutenFree site and given birth to a new broader-focus Gluten Plan using the experience we’ve gained over the past four years and all the lovely new knowledge we have from the summit.

We’ve agreed at CM HQ that the best way to share all this exciting stuff with you is to give you a brief overview today and then do a mini-series covering some of the really key speakers in the next few CM newsletters.

You can look forward to such delights as Dr Michael Marsh, the inventor of the coeliac-scoring system we use today, Dr Umberto Volta, the leading non-coeliac researcher and clinician, Dr Marios Hadjvassiliou, a neurologist who co-founded the first specialist GRD centre in Sheffield, UK, Dr Alessio Fasano,  considered the leading coeliac gastroenterologist and research scientist in the field and Dr Aristo Vojdani, an immunologist and microbiologist with a special interest in environmental triggers in complex diseases, especially GRDs.

I’ll also include a world authority on autoimmune diseases, a paediatrician specialising in childhood GRDs, a neurologist explaining why GRDs are more than likely a neurological disease and a psychiatrist whose scans show oxygen loss when you eat gluten. Exciting! I tell you: I was like a kiddie in a sweet shop!

Recurring Themes

Let’s start by looking at some of the key themes to come out of the summit; it was good to see some healthy debate generally, but I was pleased also to see a lot of agreement from the many different types of ‘expert’. Agreement means we can probably act on it.

It’s a spectrum disorder…
The over-riding theme that pretty much everyone agreed upon was that gluten illness is a spectrum disorder, there are many variations of it and we are just starting to work out the differences between them. But, we can no longer keep such a narrow focus on the villi damage of coeliac disease and ignore the much more extensive problem of people who react to gluten in a different way.

Neurological, not gut…
Many of the speakers felt that coeliac disease was, in fact, likely to be the less prevalent of the gluten diseases and that neurological problems were far more common. That suggests that the process of gluten pathology can affect the brain and nervous system just as much, and probably more, than it affects the gut.
In fact, certain symptoms and conditions kept cropping up and several clinicians said they view these as triggers for gluten exploration: IBS, headaches and migraine, ataxias, brain fog and fatigue.

The disease process…
There was much discussion of the pathology process. This is quite complex but I will attempt to distil it down for you:

Most agree that there is a triad of gluten pathology. You have to have a genetic predisposition, a trigger of some kind and hyper-permeability for a GRD to start.

Once the genes have been triggered, there follows an inflammatory and innate immune response which leads to a change in the balance of the intestinal environment (the microbiome which many of the speakers got very excited about), a weakening of the tight junctions which control what gets through the body barriers and onward down either an inflammatory and/or auto-immune disease pathway, depending on the type of gluten illness you have. Obviously, we know about coeliac disease – an autoimmune pathway with the attack on the villi, but it is no longer the exclusive gluten disease we thought it was.

Of course, once the gut barrier is too permeable, all manner of things get through; you set up an antibody or inflammatory response to bacteria, foods, viruses or whatever. This can take hold in any area of the body, particularly the brain and nervous system but also the skin, the glands (think thyroid and adrenal), the joints, muscles, parietal glands in the stomach (malabsorption), villi in the gut etc etc. These are all body barrier areas, note: hyper-permeability does not just mean gut. They’re not even sure it starts in the gut, could be the blood-brain barrier, hence the neurological picture.

In the auto-immune response, the body becomes confused and starts to think body tissue with similar structures to the antigens coming through is the enemy and begins to attack it. Think autoimmune thyroiditis, for example.
A particularly nasty part of the immunological process is molecular mimicry and explains why we become more and more sensitive to less and less ingestion. It was described as being like a vaccine booster – the body has seen the trigger once and is well primed for when it sees it again, this time releasing more antibodies, more inflammatory complexes etc so you get a more acute reaction. This strengthens every time your body sees it. That’s why many of the experts railed against the current advice to reintroduce gluten for coeliac testing: it has the potential to cause more damage.

So, what started as a simple munching of gluten has suddenly morphed into an inflammatory or auto-immune disease, for some at least. Of course, gluten isn’t the only trigger for this process but that’s what the summit was focusing on. Others might include heavy metals, viruses, toxic chemicals, bacteria, for example. But, many speakers reported that gluten seems to crop up an awful lot of times in this process so it is definitely a key one.

Stay Tuned...

Of course, it is not quite as simple as all that and many of the speakers waxed lyrical on the pathological processes we are effectively still learning about. We will look specifically at what some of them had to say in the mini-series so keep your eyes peeled for the next CM newsletters!

We’ll start with Dr Michael Marsh, the inventor of the current coeliac scoring system, explaining why he is angry at the way his scoring system is being used. He says it is irresponsible of doctors to be focusing solely on Marsh 4 for coeliac diagnosis when we know that many will have significant, damaging problems even at Marsh 0-1. Ooer, stay tuned.


For more info, please read the articles on the CM site I have linked to. Then, get yourself a cuppa and sit and read the whole of the TGF site – when you’ve done that, you’ll know more than most doctors!

I will eventually put a whole free Gluten Summit report on the TGF website so do subscribe to the site to get a notification when I’ve done that. I’ve got to finish writing your mini-series first.

For more on the Gluten Plan, a 38 page preview and contents list, see here.

Want a copy of the Gluten Summit interviews for yourself? You can get that here: Gluten Summit All-Access Digital Package. This is an affiliate link for me – I kept it because many people at the time specifically asked me for a link so I could get some benefit for doing all the work, which was lovely! If you prefer a direct link, go here.

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

Back to top