For every person with gut issues triggered by gluten eight people will present with issues that seemingly have nothing to do with gut issues! The extra-intestinal symptoms (symptoms that are not manifested in the gut) may show up as arthritis or joint pain. Or it might be as anxiety, depression, foggy brain, numbness in the limbs, extreme fatigue. It could cause weight gain, loss of energy following the eating of gluten foods or any number of auto-immune conditions.
Often, it won’t even occur to people that there could be a link between what they are eating and their symptoms.
Surely if I don’t have Coeliac disease then I am fine with gluten?
There is still this belief amongst many professionals that if you don’t have Coeliac disease (CD) then you can eat gluten to your heart’s content. And if you have CD then you will be skinny! Both these beliefs have been totally discredited by current research.
So why not just have a gluten sensitivity test?
This is more complicated than you might think. You can test for IgA tissue transglutaminase (tTGA) and IgA endomysial antibodies (EMA). If positive, you may be referred to a gastrointestinal specialist for a biopsy to confirm CD.
One of the problems with the standard blood test for CD is that unless damage has been done to the gut lining, and you have villous atrophy, then the test may not show anything. In that case, you may well be told you are fine. But that may not be so.
If the tTGA and IgA tests come back negative, you’ll be told you are fine. Even if one of the tests is positive and the other negative you may well be told you are fine. A point to be aware of is that IgA deficiency is also a possibility. This could be a reason for a false negative IgA endomysial antibodies test so IgA levels should be checked for deficiency. Think of your immune system as a defence force consisting of the police, army, navy, air-force and the SAS. Which particular part of your defence force is being called out to deal with a specific allergen? The NHS tests for one or at best 2 areas of the immune system but we are not all consistent and we can be damned contrary. It may not be IgA that is being triggered but the other part of your immune system that isn’t being considered.
Another major problem with these tests is that the current tests only look at an immune reaction to one peptide of gluten called gliadin MER 33. But what about all the other gluten peptides? This is why there may be as many as 50% false negatives test results according to the research studies.
How else can I establish if gluten is the problem?
There are other ways of establishing if gluten is the issue. Cyrex Laboratories have the most thorough testing and they will test for 32 different markers of gluten reactivity in their Array 3 test.
So why can’t I get this test on the NHS?
Simples! It all down to money. And the only lab to do this test is in the US.
Can I simply eliminate gluten?
Simply eliminating gluten is a really inexpensive first step. A healthy gluten-free diet requires more thought and is well worth a try. With a little bit of help, its’ really not that hard to do!
There is a bit of a but! As I have mentioned in other posts, it is important to establish if your issue is gluten, wheat or high-FODMAPs foods. These are sugars in the food that break down lower down in the gut and are naturally fermented by gut bacteria. By cutting out gluten, you will be reducing the FODMAPs load, by reducing fructans, which may alleviate symptoms of bloating and discomfort but you will not establish if it is gluten per se that is the issue or the FODMAPs. You may therefore be avoiding foods unnecessarily and making your diet more restrictive than it needs to be. It may also be that you react to wheat rather than gluten and could therefore continue consuming barley, rye and oat without causing symptoms.
By working with me, we can improve your digestive health and explore the underlying cause to resolve your discomfort and restore your gut to health which should in theory alleviate other symptoms!
Mind Body Retreat
You might be interested in our MindBody Retreat taking place in September 2021. Combining healthy eating and solution focused therapy for a mind and body reset. This is a 4-day, 5-nights retreat run by two highly skilled nutritional therapists and a psychotherapist and it will take place in the fabulous Black Mountains of Wales. For more info go to https://www.mindbodyretreats.co.uk
This is my daughters’ story. J went through a very stressful time for various reasons and came to me saying that the voices in her head were getting stronger. I was stunned – this was the first I heard of voices in her head! She revealed that she had been experiencing voices from the age of about five and had assumed it was normal. Anyway these voices weren’t bad but rather like a friend living in her head. Now, with what was going on in her life these auditory hallucinations had increased to such a degree that she felt she could no longer tolerate them. To make matters worse, these voices were becoming more menacing. She also started to experience visual hallucinations which at first were quite amusing; seeing a mouse in the class-room that wasn’t there, jumping over a puddle that wasn’t there but it became worrying as they increased in frequency. Her anxiety levels increased to such a degree that she almost went from being a model student to a school refuser. Fortunately, I was half way through my training and I knew we could do something about this!
It was decided she should have a CD test through her GP. Whilst waiting for the results, which we expected to come back negative, she also had a salivary cortisol test to establish why her sleep pattern was so disturbed, with salivary IgA and a gut-permeability test both of which showed results that were out of reference range indicating a problem. Although, as was strongly suspected, CD was not the issue, J went strictly gluten-free and followed a gut repair protocol for a few weeks. Within 6 weeks, all auditory and visual hallucination were gone. Anxiety levels went back to healthy levels and the low-mood was gone. School was good again! The transformation was like having a black cloud lifted off the family and having our daughter back to her happy, bubbly self!
This is a slightly unusual case but by no means unique. It is interesting to note that as a young child, J had been seen by a gastroenterologist on a couple of occasions as we were concerned about her sudden acute stomach pains. She was given some Buscopan and that was the end of it. She hardly touched the Buscopan but the pains disappeared.
As an update, 5 years on no auditory or visual hallucinations and no anxiety except when gluten containing foods are eaten by mistake! During a gap year abroad, J had porridge on two consecutive mornings whilst out in Nepal and noticed a big change in her mood and anxiety levels. When she checked with the little restaurant where she had eaten what exactly was in the porridge, it turned out it was made with wheat flakes! Inadvertently this was a blind trial.
We now know she still has to avoid gluten for her wellbeing but that is well worth the price!