Truly Gluten Free: Putting The Jigsaw Together

As she says, Micki Rose has been working on why going traditionally 'gluten free' does not achieve healing for everyone - herself included ? for over five years now. We have followed her progress through her Truly Gluten Free website and her initial 'Barrier Plan'. Now, inspired by the 'Grain of Truth' e-summit earlier this year, she has moved on to her 'Gluten Plan'. Read on...

Since I started researching why coeliacs weren’t healing five years ago, launched the TrulyGlutenFree website to document what I was finding and wrote the Barrier Plan to give us a healing plan, we have seen a veritable mushrooming of research into gluten related disorders (GRDs).

Dr Tom O’Bryan’s Gluten: A Grain of Truth e-summit at the beginning of this year did much to push our knowledge forward and we at CM HQ will be bringing you a mini-series of summaries and speakers’ best bits over the coming weeks, so do watch out for that.

The problem with such things, though, is that it’s pointless having the info if you don’t translate it into clinically-useful stuff. That’s where I was after the summit and the last few years’ experience. So, I have spent 2014 so far rewriting the TrulyGlutenFree site and evolving the Barrier Plan into a broader-focused Gluten Plan. I finished it in May and I am pleased to say it has received rave reviews so far. Phew.

The previous Barrier Plan focused very much on the barrier hyper-permeability common to GRDs. I had realised many people had other intolerances, chronic inflammation and autoimmune processes as a result of the damage done to the body barriers (gut, blood-brain, lungs, skin, bladder lining etc) by the effect, mainly, of gluten on zonulin.

The BP worked. I have seen coeliacs heal their villi, NCGS’s stop their migraines and chronic fatigue, multiple intolerants repair their leaky guts, IBD (inflammatory bowel disorders) sufferers calm their pain, and autoimmune sufferers lower their antibodies. Lovely to see and it really spurs me on. However, I also get asked daily about wheat intolerance, gluten malabsorption (bloating), IgG intolerance to gluten, behavioural issues (eg autism) with gluten ingestion, adrenal and thyroid disorders that won’t heal (often gluten) and much more besides. There is also a severe subset of people – of which I am one – who need a much more complex approach.

The new TGF approach and 280 page Gluten Plan has a wider focus for that reason. It is now squarely aimed at helping anyone with any form of gluten related disorder, wherever they are on the spectrum, using the knowledge we currently have.

Of course, there is a massive education need because most people who have those don’t even know it yet; they just know they feel poorly. So, part of my aim for TGF is to help people think about and officially identify gluten as a culprit underpinning everything if they need to, because one major thing we’ve learned over the past few years is how gluten is involved in so many illnesses. See the list of gluten-related illness known about here; it’s long. Obviously, yours may not be gluten-related, but these are the conditions that should trigger the gluten thought process.

In fact, gluten illness – not just coeliac disease – is now known as a functional multi-system, multi-organ disorder. In other words, it’s very likely in there somewhere as a factor, and usually quite a major one, in any chronic illness. I have certainly seen that bear out clinically.

It’s Never The Same Twice

One of the biggest lessons we have learned over the last four years is the need for a flexible approach because everyone’s experience of gluten illness is different, depending on how far along they are, which type they have, which pathway it has gone ie. autoimmune, inflammatory, neurological, gut, adrenal, joints or whatever. So, the TGF approach now gives a kind of pick & mix approach for greater flexibility and these are based around three key steps:  

Step 1: Finding Your Type of Gluten Related Disorder
Looking at gluten testing as it exists now and my idea of what it should be, given all we now know. It is certainly not as simple as a 33-mer gliadin antibody or transglutaminase 2 test. It appears more gluten-sensitives could have transglutaminase 6 than 2 and 50% don’t even show a gliadin antibody.

Step 2: Determining Your Diet
You might be fine on a wheat free diet for your bloating, you could be coeliac and heal really well on the traditional wheat, rye and barley gliadin free diet, or you might be a hyper-sensitive NCGS requiring an Autoimmune Paleo FODMAPs free approach! Only you can establish your specific healing diet but, blimey, this is the most confusing and hardest part to get right, isn’t it?!

Step 3: Establishing Your Healing Protocol 
There is a growing realisation, in clinical circles at least, that a GFD is simply not enough for most because once the inflammatory and autoimmune processes have kicked off, even removing the foods will not solve them for a long time. The statistics show that recently diagnosed coeliacs are at most risk of health problems in the first year of a GFD. That’s because no-one is looking at the ongoing processes underneath.

That shocked me, so I worked out a core gluten related disorders supplement prescription, then a pick & mix of add-ons to suit other needs. Those might be for inflammation, autoimmune disease, malabsorption, nutrient deficiency, barrier healing or whatever. Obviously, you need to work with your chosen local health practitioner with this, but I have given you what I have learned.

The last section of the Plan What’s Blocking You? took by far the longest to write. I think of it as a kind of ‘Chronic Illness Checklist’ if you like. It covers areas such as infections, glutathione depletion, liver detox pathways blockages, methylation difficulties, adrenal and thyroid fatigue, and much more. How do you test for them? How do you treat them? Where can you find out more?

The biggest healing block we have come across so far, for example, is infection, so that is my focus for the next few months alongside non-ingestive healing methods for those of us who can’t tolerate even the meds or supplements we need to get well.

There is much more work to do, always, but I feel happy that we are at least using the most up to date knowledge we have to make a practical difference for those needing help with gluten related disorders. I hope it helps.

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!

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


June 2014

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