Making sense of Non-Coeliac Gluten Sensitivity

I have finally found a diagnosis for my symptoms – Non-Coeliac Gluten Sensitivity. It has taken a few years of trying various ideas and theories, and stabbing slightly in the dark, but it was with great joy that I recently realised that a lot of the tribulations in my life could be attributed to ingesting gluten. Not that I was in fact eating a vast quantity at the time of diagnosis – but don’t get me wrong, I have in the past.

When I first embarked on my bid to turn my health around in 2016, I discovered the South African version of the paleo diet – Banting (founded by Professor Tim Noakes and The Real Meal Revolution Team). The diet is founded on the principles of a Keto diet, and is essentially low-carb, high-fat with masses of plants, nuts and seeds, with a little bit of fruit. It is by its nature gluten free therefore, but of course 5 years ago I didn’t join the dots. However, my chronic symptoms of; bloating, gas, repetitive cases of sinusitis, thrush and cystitis, as well as mood swings got significantly better as the diet progressed. I would still have sporadic flare ups however, and was unable to see any links at the time.

In January, 2020 – I joined the Veganuary army. I enjoyed it so much that I continued being vegan for 6 months of 2020. However, as the year progressed my symptoms flared up again significantly. I was depressed, and downright fed up – how could I be eating what I considered to be a very healthy diet, yet still getting my old symptoms back?? In hindsight I was ingesting a lot more gluten laden products in the forms of grains. (An A-ha moment!)

So, what is Gluten?

·      Gluten is the collective term for a group of proteins found in the grain’s wheat, rye and barley and their various forms (i.e., spelt, einkorn, triticale).

·      It is best known for giving baked goods their doughy, elastic structure. However, many foods contain gluten for other purposes too – such as a thickening agent or flavour enhancer.

·      Humans are not evolved to eat grasses – so why did omnivorous humans (ability to eat both plant and animal foods) turn to the seeds of grasses? What is in these seeds of grasses that makes them so bad? In many cases it is the gliadin (a sub-component of wheat) that is the problem. Since the 1950’s/60’s humans have tried to hugely increase the yield of the crops to feed the growing population. We’ve hybridised crops and genetically manipulated them to grow much bigger and yield much more. Is this contributing to the rise in gluten related issues? Another view point to consider though is that as a population we are ingesting far more gluten containing grains than ever before. Gluten is hiding in so many processed foods. This could also be a big factor in why the prevalence of gluten related disorders is on the up and up year after year.

So, what is ‘Non-Coeliac Gluten Sensitivity’ (NCGS)?

·      The term describes individuals who cannot tolerate gluten, and experience symptoms similar to those with coeliac disease, yet lack the same antibodies and intestinal damage as seen in coeliac disease.

·      Some Common symptoms of NCGS include:

o   Bloating, gas or abdominal pain

o   Diarrhoea or constipation

o   Nausea

o   Headache

o   Brain fog

o   Joint pain

o   Fatigue

o   Neuropathy (pain, numbness, tingling, weakness in your hands, arms or feet)

o   Skin problems

o   Depression

o   Malabsorption and Anaemia

o   As well as many, many other symptoms that don’t appear to have any connection – but remember that the body is connected and we must treat it as such.

o   “The gut is the gateway to all disease” Jennifer Esposito

·      Symptoms typically appear hours or days after gluten has been ingested, a response typical for innate immune conditions like NCGS.

What NCGS is not:

·      It is not an autoimmune disorder

·      There is no intestinal damage

·      It is not an allergic disorder (Classified as a Wheat Allergy instead)

For me personally, the obvious symptoms of ingesting gluten are; bloating, gas and tummy pains, brain fog, joint pain and a serious decline in mood. However, the symptoms that sought me to dig deeper and finally arrive at my diagnosis were; severe itchy skin, with no rash (medically called pruritus) on my torso - front and back. I would frequently draw blood when scratching, it was intense! The journey to discover what was causing this took me through potential environmental toxins causing it, such as washing powder, body creams etc. and then finally to having extensive blood tests run. The results showed a severe lack of iron – my serum ferritin stores were very low at 8.4 microg/L (they should be up around the 100 microg/L mark!). Malabsorption and anaemia being symptoms of NCGS. The penny was starting to drop.

My GP then suggested a coeliac blood test – I must be honest this came out of left field for me – despite being an integrative nutrition health coach and having studied coeliac disease/ wheat allergies & non-coeliac gluten sensitivity extensively during my course at the Institute for Integrative Nutrition, I honestly hadn’t considered this! But it got my brain going, and I thought to myself – this could be it? The key…. At long last. I did a lot of research, and realised that I needed to be ingesting a considerable amount of gluten prior to the blood test. I only had two weeks to the test, but I embarked on my own scientific experiment on myself and proceeded to eat an abnormally high amount for my current eating regime. I hated it from the get-go. Gluten products for breakfast, lunch and dinner was honestly hell. It was like being steam rolled with all my symptoms at once. The thing that got me the most though was my severe lack of energy, motivation, get up and go and brain fog, as well as my short temper and severely lowered mood. My poor kids and husband had to bear the brunt of that. And yes, my pruritus on my torso was as raging as ever.

As the day of the blood test approached, I will admit I had swinging emotions (aside from the gluten mood swings that is!) that left me nervous and sad at the prospect that I could be facing a lifelong autoimmune diagnosis. On the flip side, if I had a negative result, I would effectively be back to square one. The result was negative to coeliac disease, which left me wondering what next. The first thing I knew without a shadow of a doubt was, that I had no inclination whatsoever to continue eating gluten – my intuition was very strongly shouting at me to let it go. I was not sad at all at this prospect I must admit. So, I started to explore the idea that it could be non-coeliac gluten sensitivity. The NHS does not support any type of testing to diagnose this sadly, so off my own back I did a York Premium Food Intolerance Test (I am not affiliated with them and I don’t benefit from you clicking on the link to explore them for yourself). In short, my top intolerance was to gluten and primarily gliadin in the gluten. There was my answer! Hallelujah! I discussed this with my GP, and he confirmed that NCGS was very likely the cause. And so, began my proper journey with understanding the condition that is - Non-Coeliac Gluten Sensitivity.

My aim through this and the following blog posts on the subject is to de-mystify, explain, inspire and encourage others with the same condition or suspicion of NCGS, that it is ok – it does not have to mean the end of the world and that life after gluten is pretty darn good actually as the symptoms are slowly falling away!

Please do ask questions in the comments below and I will of course endeavour to answer them from an integrative nutrition stance point. Thank you for taking the time to read this, and I do hope that it has been in some way useful.

                                                                                                                        Love Sammy X