Should you go gluten free?

• Bone or joint pain,
• muscle cramps,
• leg numbness,
• chronic fatigue,
• abdominal pain,
• headaches,
• foggy mind,
• diahorrea,
• weight loss,
• eczma and rashes,
• depression,
• anemia,
• behavioural changes.

This is a list of symptoms for Non-Coeliac Gluten Sensitivity (NCGS) source.  There is a lot of overlap with CFS/ME symptoms, so If, like me, you read this list and identify with several symptoms then perhaps it’s time to try cutting out gluten for a few weeks and see if things improve.

What is gluten

Gluten is a protein found in Wheat, Barley and Rye.  It is made up of two main groups of protein glutenins and gliadins.

Wheat Allergy, Coeliac Disease, Non-Coeliac Gluten Sensitivity

There are three different types of reaction to wheat proteins; Wheat Allergy, Coeliac Disease and Non-Coeliac Gluten Sensitivity (NCGS).

• Wheat Allergy is a classic food allergy and is an adverse immunologic reaction to wheat proteins.  I won’t be discussing this further in this article.
• Coeliac Disease is an auto-immune condition where the reaction to gluten causes damage to the small intestine.  There is a good explanation of how gluten contributes to Coeliac Disease and damages the gut at SCD lifestyle.
• In Non-Coeliac Gluten Sensitivity consuming gluten does not cause damage to the small intestine, but there is an immune response.  People with NCGS are more likely to have non-GI symptoms such as headache, “foggy mind,” joint pain, and numbness in the legs, arms or fingers.  The symptoms can occur hours or days after gluten has been eaten source.  There seems to be some confusion in the literature as to whether people with NCGS have a damaged gut.  my understanding is that damage can be present, but it’s not caused by gluten (because that would change the diagnosis to Coeliac Disease).   This post lists the other causes damage to our gut.

More detail on the differences between these three types of reaction to wheat/gluten can be found in this paper if you’re interested. In all three conditions the immune system is activated, but in different ways.

There are tests available for Wheat Allergy and Coeliac Disease, although it’s possible to get false negatives in Coeliac Disease diagnosis.  There is currently no test that can diagnose NCGS. Therefore it will not have been excluded as part of your diagnosis of CFS/ME.

What happens to gluten in a healthy gut

Digestion of Wheat Proteins happens in two stages in healthy individuals:

1. Stomach – Digestive juices produced by the stomach wall split the proteins  into peptides.  These peptides move to the small intestine for the second stage of the process.

2. Small Intestine –In the small intestine they are subjected to pancreatic juices and then reach the intestinal wall where they are broken down by enzymes in the gut lining.  Even in a healthy gut these peptides are resistant to digestion.

What happens to Gluten in a Damaged Gut

With damaged gut flora the second stage of the digestion process does not happen, as a result the peptides get absorbed into the body and cause problems: in particular, problems with brain function and the immune system.  A damaged gut is one of the characteristics of Coeliac Disease, and can also be present, but usually to a lesser extent in NCGS.

Can I have Gluten Sensitivity if I have a healthy gut.

The simple answer is Yes.  The sources I have read here and here agree that NCGS can occur when there is no increase in intestinal permeability.  It is an immune reaction.

Conclusion

It is possible to have Coeliac Disease or NCGS and be unaware, because the reaction to eating gluten is sometimes delayed by several hours or days.  Given that most people eat gluten containing foods several times a day the best way to see if you react to gluten is to remove it from your diet completely for 2 weeks and see if you notice a difference.

I know first hand how daunting it is to make a major change in your diet when you are suffering from CFS/ME.  I explain in this post how our family coped with changing to a gluten free diet for first my daughter and then me.

There is plenty of clear evidence that NCGS does exist, but this does not seem to be widely known by many doctors.  If you want advice from your doctor about whether you should try a gluten free diet I suggest you first question them on their knowledge of NCGS.  If they are not aware that the condition exists and that there is medical evidence to support this, they are not in a position to give you advice about going gluten free.

Please note that I have no medical training and my recommendation in this post is based on the reading I have done and my own experience of following a gluten free diet.