So, here we are at the business end of the Gluten Summit series. Time to summarise what we have learned about gluten related disorders (GRDs). This piece could be extremely long so do please read the whole series to get a full understanding of the subject. For our summary, I have picked out the bits I think should help us most in our day to day gluten lives. For ease, I have split it into four key sections for you: Overview, Causes, Diagnostics and Treatment.
There is a spectrum of GRDs, not just coeliac disease (CD), as was once thought. CD is important, of course, but there are likely double the number of NCGS sufferers than CDs and we have to acknowledge that.
Non-coeliac gluten sensitivity (NCGS) is a very real disorder; sufferers are not making it up even though many standard gluten tests appear negative. We simply don’t have a marker for it yet, but that doesn’t make it any less real. Many more people seem to have neurological rather than gut involvement and key indicators include idiopathic brain fog, headaches, fatigue and generalised pain. Most thought the presence of these in patients should trigger an automatic GRD investigation.
More women than men suffer, the numbers are a lot higher than thought – estimated at 6% of the population currently for NCGS alone. GRDs are not genetic in the sense we are born with them; we can develop them over time and suddenly lose oral tolerance to gluten after many years of eating it OK.
Most experts think there is a triad of pathology. For a GRD to develop, we need a genetic susceptibility to be triggered by something, which then causes hyper-permeability of body barriers. This then allows inflammatory and/or autoimmune conditions to develop over time, and these can affect literally anywhere in the body in multiple areas, depending on the person’s weaknesses.
The most common illnesses I have found clinically so far include adrenal and thyroid disorders, migraine, chronic fatigue, multiple sensitivity and arthritis conditions, but that’s probably only because those types of people contact me. The general consensus seems to be: if you can’t find a reason for a condition, consider a GRD.
Barrier hyper-permeability (gut and blood-brain at least) is a factor, which brings multiple food and chemical sensitivity along with it, most notably lactose, fructose, nickel and possibly histamine intolerance. Malabsorption and consequent nutrient deficiency is another factor, albeit for varying reasons: villi for CD, poor absorption and inflammatory for NCGS. Hypo-perfusion - poor oxygenation to the brain - has also been found, as have brain lesions which resolve with treatment.
The jury is basically still out, but there has been a flood of research over the past few years and more information seems to appear daily. If we accept the pathology triad premise above, the question is what triggers the genes and promotes hyper-permeability? Here is a list of possibles mentioned for you:
Changes to the microbiome – this was agreed by most speakers as the really key issue. Something, somewhere is affecting the crucial balance of micro-organisms in our gut. Since the microbiome’s gene pool is vast compared to our human genome, many assume that changes to the microbiome is affecting gene expression in some way. In easy terms: changes to the gut flora balance is somehow turning on and off genes willy-nilly and we need to work out why.
It is also assumed that the change in gut flora balance is affecting our immunity in such a way that we are mixing up messages and reacting too strongly to what should be safe substances. Could our immunity focus have shifted in some way maybe because we no longer have some of our friendlier pathogens from yesteryear? Possible.
Diet – especially allergens, poor fats, high sugar, processed food and microwaved food. No-one can actually digest gluten; we haven’t evolved a way to do it yet. It affects everyone’s gut lining because of the upregulation of zonulin, the barrier control protein, whenever we eat it; it’s just that some of us can repair the damage better than others. Some may not have the cellular energy available to constantly repair the gut lining every 3-5 days.
Use of antibiotics (changing the microbiome directly) and certain meds that trigger hyper-permeability, especially NSAIDs.
Toxin exposure – an acute episode or a toxic overload over time. Agrochemicals and GM foods were quoted most often.
Pathogens – back to the microbiome again. Bacterial and parasitic infections may be skewing things in the gut but they may also be triggering molecular mimicry autoimmunity conditions because they, or proteins they release, look similar to body tissues.
High blood sugar – quite a few speakers said our current higher carb, low good-fat diet was doing us no favours. The carbs feed the gut pathogens, weaken cellular and nerve membranes, trigger glycation, inflammation and production of damaging free radicals.
Stress –Stressful events, which could be physical like injury, burns etc or emotional events, are known to affect gene expression. I think this could turn out to be a really important area and is currently my own research focus.
This is still a hotbed of controversy with the new thinkers snapping at the heels of the old guard. The biggest message to come out of the summit was that coeliac diagnosis is too hit and miss, subject to misinterpretation, focuses on latter stages only and cannot be relied upon for ruling in or out a GRD, especially the more prevalent NCGS. The stance seems to be to confirm CD if you can, but test some of the parameters below and trial a GFD especially in suspect, idiopathic cases.
For ease, here is a rundown of the key diagnostic info that I picked up:
- Don’t assume antibodies to gliadin or transglutaminase will show up: many CDs and particularly NCGSs don’t have any. If they do, it could be to a different gluten peptide, not just 33-mer gliadin, or not to the standard transglutaminase 2 (tTg2) since tTg6 is cropping up quite a bit too and could be the neuro-GRD damage marker used in future. tTg3 is also a possibility in skin GRDs like dermatitis herpetiformis.
- If looking for antibodies, you should look for IgA, IgM and IgG where possible, not just one of them. You should also check your total IgA levels as, if low, the test results for the antibodies will also look low and could be falsely negative.
- If antibodies show up, do not ignore them. Never wait for stage 4 positive biopsy before you act. Salivary IgA and IgM gliadin antibodies in children over 1 year especially appears to be highly accurate for CD diagnosis and is much less invasive than a biopsy!
- If no antibodies show up and you suspect a GRD, trial a GFD for 3 months anyway. Be strict. Also look at cellular markers eg. ALCAT and other markers listed below.
- Same for genes. Look for DQ2 and DQ8 but also DQ1 (and DQ3, I say). Just because you have the genes doesn’t mean you have triggered them and have a GRD, but it does mean you should monitor and take notice as you are more likely to in future. All you need is a trigger.
- Check the state of your microbiome.
- Measure inflammation levels.
- Look for barrier/permeability markers, especially zonulin antibodies.
- Check additional sensitivities eg. lactose, fructose, nickel and histamine and nutrient levels because of malabsorption.
Ok, the nitty-gritty stuff. GRDs appear to have multi-factorial causes, as we have seen, so will need a multi-factorial treatment approach to match. In essence, the approach should be aimed at repair of the body barrier permeability and switching the appropriate genes back off.
The GFD is just not enough, certainly in my view and pretty much all of the speakers’. The diet of choice, clinically, came out as grain and dairy free at least, with some advising low FODMAPs for NCGSs, who seem to be more sensitive to them, fermented foods to replenish the microbiome, better fats to avoid inflammation and free radical production, feed membranes and linings, lower carbs to discourage feeding pathogens and blood sugar disorder, and higher protein for repair. Cross-reactive foods and pathogens need also to be avoided.
In fact, I have come to the conclusion that there is no one diet fits all with GRDs at all – nowadays I show people how to find their own healing diet rather than slavishly follow a prescribed one. A spectrum disorder needs a spectrum of diets.
Neuro GRDs take longer to get well than other types and NCGSs generally need to be much stricter in treatment as their exposure level appears to be lower even than the 20ppm set for the CD pathology trigger. It can take 2-10+ years to bring things back under control. Antibodies reducing is a good progress indicator.
Most agreed that the diet is the absolute key but many added specific treatment areas including:
- Restoring the microbiome.
- Repairing barrier/hyper-permeability, including IgA and SIgA levels to support mucosal immunity.
- Lowering inflammation.
- Ensuring digestion and absorption.
- Correcting nutrient deficiencies, especially of fatty acids, minerals including magnesium, iron and zinc especially, Vitamin D and B12.
- Bolstering cellular energy levels to enable constant body repair.
- Regulating the immune system, especially in multiple sensitivity and autoimmune disease cases.
- Supporting the nervous system by using relaxation-response and neuroplasticity techniques.
So, just a bit to go at there then!
I hope that you have found this series of articles helpful if you suspect or have a GRD. My overall message to you is that you are not going mad: GRDs do exist whether you can see them on test results or not. The world’s experts are working on it for us and meantime, happily, there is a lot we can be doing to help ourselves.
To read the introduction to the Gluten Summit, see here. Catch up with the mini-series 1, 2, 3, 4 and 5.
For practical help, I have put a ton of info onto the TrulyGlutenFree website for you, and there is a hand-holding step-by-step testing and treatment process, covering all of the above factors, in the Gluten Plan you to follow, too. Everything is split into three key sections: Finding Your Type of GRD, Determining Your Diet and Establishing Your Healing Protocol. It’s a kind of pick & mix approach for you to build your own programme depending on where you are in the spectrum and process.
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.
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