I was just reading a report on the provision of care in the NHS for ME/Chronic Fatigue Syndrome sufferers – which makes damning reading itself – when it struck me that I recognise these symptoms from most gluten-sensitives I currently deal with:
ME or CFS (also known as Post Viral Fatigue Syndrome – PVFS) affects around 250,000 adults and children across the UK; common symptoms include muscle pain, persistent exhaustion, poor concentration and memory problems, headache, un-refreshing sleep and digestive problems such as nausea or IBS.
Recognise those? I do.
That’s why my first advice for anyone with chronic fatigue I come across is to look for gluten sensitivity using the gene test, EVEN if the (as we now suspect) unreliable coeliac test comes back negative. It may not be the only factor but it would certainly make it a whole lot harder to get well if you have it and continue to eat grains.
I am a case in point. I have suffered twice with so-called CFS which only relieved when gluten (the first time) and grains (the second time) came out. I still get it as a reaction to being glutened now, albeit more mildly thank goodness.
Part of the reason I developed the Barrier Plan was because I felt like my fatigue was getting truly out of hand and I was going to end up bed-ridden. Thankfully, for the second time, I have fought it off.
I think it went the first time because I significantly lowered my intake of gluten even though I was still eating other grains. I think it came back a decade later because I was eating those grains and the damage to my system – be it inflammatory, auto-immune, increased allergy, malabsorption, all of the above – continued internally! If only I had known..
I think part of the problem is the almost immediate effect the reaction has on my adrenals and thyroid, when I crash within two hours of ingestion, but also longer-term on my ability to maintain nutrient levels including iron and B12 because of malabsorption and probably because of an effect that has on my mitochondrial cellular energy production. I know not everyone will be the same. Of course not. But I have seen chronic fatigue improve often enough with the removal of wheat, dairy, gluten and grains so my standard advice now is:
CFS/ME? Look at true gluten (grains) as a primary or secondary cause and act on it if you want to take the pressure off your body so you can get well again. Please.
Hi Miki,
It struck me while I was reading your post that viruses and Gliadin share a common theme: they are proteins. Viruses and some of their subunits are self-assembling molecules and Gliadin-Gluten is a polymer. Stryer in his text on biochemistry is clear that there are only three kinds of nutrients: protein, carbohydrate and fatty acids. I think that we are all getting closer to a clearer and simpler picture of just what is going on inside of us.
Yes, Patrick, I was thinking the same thing myself the other day about viruses. Although I don’t subscribe to the theory that allergens are all proteins. Many people, including me, react to starches. I guess we can and do react to all three macronutrients, just that the allergen research has tended to focus on the protein side. That’s also why the allergen testing for foods/labels etc annoys me as what they mean is that they test for the allergen protein not the full food itself, much like looking for gliadin instead of whole gluten. Rant, rant 🙂
Hi Micki,
This makes a whole load of sense to me too as it was being diagnosed with PVFS after I had a virus 5 months ago (and being snubbed by my GP) which led me down the road of self help. Thankfully I was lucky as the road led to your website Micki. I can’t help but feel so bad for the sufferers out there who don’t have this info though. My brother suffered with CFS about 6 years ago and it took him about 18 months to get over it but I wonder if it would have been quicker for him had he cut out gluten and grains :(. From the early days I was on countless PVFS websites with hoards of people sufering from awful symptoms – the reason I investigated gluten further was I came across this website in my browsing http://www.postviralfatigue.me.uk/symptoms.aspx and there was a guy on there saying the exact same thing as in this article. That was back in June and here we are now! Waiting for gene test results :). I do feel pretty happy to be one of those on the right road. Although it wasn’t an age ago when all this started it really feels like it. I remember not being able to walk 500m down the road without feeling like I was about to collapse! A whole lot better now I can tell you 🙂 I fully intend to post on that old blog once I know my results and spread the word.
Thanks Debbie, that’s a useful comment. I must go and look at that blog then and I am certainly glad you found me. Fingers crossed it is 8 months recovery for you and not 18 months! Interesting that your brother had it too – gluten genes…? We wait to see!
Interesting. My understanding is that we only have to avoid wheat, rye, barley (and oats cross contaminated with wheat in the fields, during transport, or when it’s processed) to remain gluten free. Rice for example is fine as it doesn’t contain gluten, as are starches such as potatoes.
I don’t have CFS but noticed an increase in energy when I stopped consuming gluten almost two years ago.
I’m told that it takes 2 to 3 years for the damaged villi in the small intestine to become healthy again. As I was being evaluated for gluten sensitivity, I too was found to be extremely low in B-12 and iron, D also, but my levels began improving as soon as I began taking nutritional supplements (that are certified as gluten free). By the way, an interesting side effect of taking these supplements was that my blood pressure – (which had been creeping up) – returned to normal within two weeks of starting those supplements.
I don’t understand why I could absorb these nutrients from supplements but not food. Still don’t.
The doctor of naturopathic medicine who started me on this journey believes that perhaps 1 in 8 are gluten sensitive. One of the messages I’ve heard from the gluten free community over and over again is that anyone who has a chronic health condition needs to be evaluated for gluten sensitivity. If I’m recalling this correctly, there are 300 identified symptoms of gluten senstivity, so how it expresses in one person compared to another varies greatly. The most important message is this, for those of us who have gluten sensitivity, we can never have gluten again. So it’s important to get diagnosed to help you consistantly maintain your commitment to staying gluten free.
Apologies, I was not aware that some people are sensitive to all grains. I didn’t understand that when I wrote the above post.
No worries, Lisa, most people don’t understand and that’s why many coeliacs actually never repair their villi either. There is a type of gluten in all grains and it may be that those 1 in 8 are actually sensitive to more than just gliadin, which is what this blog is all about.
So pleased you are doing better, keep at it!