Ta-da!!! Sorry I have been quiet the last week or so. I know I was meant to be writing the trulyglutenfree recipe book, but actually, to do that right, I decided I needed to really get to grips with just what the heck is going on pathologically when someone is gluten sensitive.
I have a good idea, of course, but in order to get well (and I want you and me to!), you really need to understand the mechanism of what is going on in the body so you can specifically target those mechanisms and steer them back in the right direction, if you see what I mean.
So, off I set, spending a whole week reading about allergy immunology, tons of gluten research, books stacked up on my shelves, journal articles, emailing experts around the world etc. I fully immersed myself in the subject. Bliss! Like most clinicians you never have time to really do that unless you work until 2am every morning and I am really glad I took time out to do it – and I will continue to!
First, I endeavoured to understand the basic immune pathology of what is happening and identify a step-by-step pathway of disease so I can easily explain it to patients. Here’s a quick go:
In effect, damage to the gut caused by viruses in childhood, gluten in the genetically-susceptible, infections, environmental chemicals etc etc leads to a loss of oral tolerance of food and environmental peptides. In 80% of people, especially those who are gluten sensitive, it also leads to an upregulation of a substance called zonulin which breaks down the tight junctions in the gut wall, causing a leaky gut. You start to get mucosal immune reactions where you produce antibodies in the gut initially which causes even more gut leakyness. This is the first stage of immune reaction and can be measured. If it weren’t for the zonulin and damage done by the gluten especially, the immune reaction would stay at a mucosal level – in the mucosal area of the gut.
The second stage is systemic (in the blood stream) where the food and non-food peptides have gone through the gut wall and a different type of immune reaction starts, with you producing different types of antibodies and immune complexes to them as they are seen as foreign bodies.
This kicks off two main problems in the gluten-sensitive: inflammation causing tissue damage and auto-immunity. In the latter, because memory cells become involved, you start to react every time the peptide is seen in the blood, and eventually to anything that looks similar to it – a cross-reactive food or your own tissue/cells. Antibodies have been found in villi (coeliac disease), skin (dermatitis herpetiformis) adrenal, thyroid, ovary, brain, heart, kidneys etc so wherever the cross-reaction takes place is where the problem will start to show eventually.
You can see why gluten sensitivity is linked to so many conditions. It is termed by some as a ‘foundational’ disorder ie. at the heart of a lot of diseases, and as a ‘multi-organ-system disorder’ by some immunologists. And most people (and most health professionals) don’t even know about it!
There has been an explosion in research over the past 5 years especially and some people think we are where we were with coeliac disease thinking 20 years ago, so on that basis it will be another 20 years before NCGS is recognised and understood at the same level CD is today (which is not much in the healthcare arena even though there is a ton of research out there now.)
The other thing to watch is that zonulin. If we know it can break down the gut tissue junctions, does it not stand to reason that it can make other body barriers leaky too? Our barriers are the blood-brain, gut, lungs and skin. No coincidence then that most gluten sensitives have a problem with poor cognition & memory, neurological issues like anxiety, migraine, muscle and nerve issues etc, skin, gut symptoms and asthma!
Obviously it is a lot more complicated than that, but that is, in essence, what is believed to happen.
NB: I just found a diagram from Dr Vodjani, an immunologist who specialises in this area that shows this beautifully.
So, the next question was how do I check?
I scoured labs across the world until I found a way of testing every stage and developed a diagnostic flow chart to help me through what is a very complex minefield! Those tests, including the mucosal and systemic immune reactions, zonulin-related leaky gut, cross-reactive foods, auto-immune organ/system antibodies, systemic inflammation, malabsorption and nutrient levels will shortly be available; most are sorted but I am waiting for others. I have had to use labs in 5 different countries to get the ones I want done!
Finally, I developed the trulyglutenfree prescription protocol further to take into account all of the stages taking place, sourced and checked all the supplements (complete with a 2 day migraine as a consequence of one not being right, thanks!) and developed a 3 stage protocol. (For those of you already on the existing protocol, the second stage is very similar and I will advise at review any changes needed.)
The protocol has to take into account the inflammation, immune reactions and leaky gut/barriers, as well as the likely consequences of having long-term unchecked NCGS – malabsorption, nutrient deficiences and system/organ dysfunction eg hypothyroid, hypoadrenia, hypochlorydia – oh yes, one of the antibody links I found was to the stomach parietal cells which begins to explain why so may gluten sensitives are short of stomach acid and hence malabsorbing!
Anyway,this is no doubt a bit complex to understand. I just wanted to let you know I have not been dilly-dallying this week, or hiding, but completing some really important work which will no doubt continue, but puts me in a much better place to be able to help you. I am determined to get myself and you well and I think we’re getting there.
Now, what about that recipe book….?! I think I’ll have a lie down first.