May is Celiac Awareness Month. While there are only a few of my patients with Celiac disease, about 25% of my patients are on a gluten-free diet.  This is because they probably have Non-Celiac Gluten Sensitivity (NCGS), and it can make their pain and brain symptoms worse. If you have health symptoms, there is only one way to find out if they are linked to gluten – cut it out and see what happens.

 
 
Early use of the term ‘gluten sensitivity’ in clinical research referred to people with positive celiac blood tests but normal bowel biopsies. A 2009 review, however, highlighted many diseases of the nervous system that are linked to gluten, both in celiac and NCGS, suggesting that the immune response may not even need to cause GI symptoms to damage the brain.

Is NCGS for real?

We still don’t know much about NCGS because it is a relatively new diagnosis. A search of the medical literature for this term yields 2 papers published prior to 1980. A research trickle began with 28 papers in the 1980s and 100 in the 1990s, but there have been 518 papers published since 2000.

There is still some controversy surrounding NCGS. Some researchers think it might be linked to sugars in the diet called FODMAPs. Others have suggested it might be due to histamine intolerance. One group reported that they found blood markers suspicious for NCGS in 15% of people with chronic fatigue syndrome.

One reason for the controversy is that many of the studies measure the effects of a gluten-free diet in these patients over a very short period of time. They only track symptoms for a few weeks, sometimes even only for a few days. But while your GI symptoms may improve within a week or two after going gluten-free, your brain can take months to heal.

How can I do this?

The only test available for NCGS is a trial of a gluten-free diet. In my practice, this means 3 months without a crumb of gluten. I tell my patients that if gluten triggers their immune system, a single cracker can inflame them for a month. A little cheat now and then may not seem like much, but it can mean the difference between success and failure. Strictly speaking, this should be done using a specific double-blind technique but this is rarely possible and likely unnecessary.

Here are a few resources to help you with a gluten-free diet:

 

What should I look for?

If you suffer from GI symptoms, they should improve within a few weeks. You may notice reduced pain in your muscles or joints. Energy and mood may improve. Anxiety may be reduced and sleep can improve. Asthma, eczema, migraines and other symptoms may decrease. Numbness and tingling, twitching and tremors, or problems with hearing, taste or smell can all be nerve-related and may improve. You may lose weight or just notice reduced swelling or edema. And other diseases like diabetes or high blood pressure can become more controlled.

If this sounds like it is too good to be true, remember that every organ follows instructions that come from the nervous system. If your brain and nerves get less inflamed on a gluten-free diet, these organs start to work better. It is remarkably simple, and while there are no studies yet supporting these potential improvements, in over a decade of practice I have seen them happen. Each and every one, several times.

Gluten is not unhealthy. A gluten-free diet won’t help everyone. But the only way to tell if it will help you is to try it for three months.

 
 
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