Could My Symptoms Be Caused by Gluten?

Many people never consider that what they eat could be linked to how they feel. So when someone asks, “Could gluten be causing my symptoms?” the honest answer is: yes, it could.  Whilst the link between gut symptoms and gluten issues is pretty much recognised (but not always!), the link between gluten and non-gut related symptoms is rarely discussed.

However, for every one person who experiences clear gut symptoms triggered by gluten, up to eight others develop symptoms that seemingly have nothing to do with gut issues!

Extra-Intestinal Symptoms of Gluten Intolerance (those that are outside of  the gastrointestinal tract):

Gluten intolerance and non-coeliac gluten sensitivity can cause a wide range of extra-intestinal symptoms.  These may include:

• Joint pain or arthritis
• Anxiety or depression
• Brain fog or poor concentration
• Numbness or tingling in the limbs
• Extreme fatigue or low energy
• Weight gain or difficulty losing weight
• Autoimmune conditions

If you’re struggling with weight management, low energy, or unexplained symptoms, gluten may be worth investigating further.

If you’d like to find out more you might be inerested in reading my academic paper: https://pmc.ncbi.nlm.nih.gov/articles/PMC6040027/  on An exploration into the avoidance of gluten in the absence of coeliac disease. In this paper I look at all the various symptoms people have found relief from following the adoption of a GF diet, their struggles with the medical system and their lived experiences.

Surely If I Don’t Have Coeliac Disease, Gluten Isn’t a Problem?

This is a very common misconception. For years, many professionals believed that if you didn’t have Coeliac disease (CD), gluten was harmless—and that everyone with CD was thin. Both beliefs have been discredited by current research.

There is now growing recognition of non-coeliac gluten sensitivity (NCGS), a condition where gluten triggers symptoms without the classic gut damage seen in coeliac disease.

Why Not Just Have a Gluten Sensitivity Test?

Gluten testing is more complicated than it sounds.

On the NHS, testing usually includes:

• IgA tissue transglutaminase (tTGA)
• IgA endomysial antibodies (EMA)

If these are positive, you may then be referred for a biopsy to confirm coeliac disease.

Limitations of Standard Gluten Tests

One major issue is that blood tests often only detect gluten problems once gut damage (villous atrophy) has already occurred. If this damage hasn’t happened, tests may come back normal—and you may be told everything is fine when it isn’t.

What Can Go Wrong With Gluten Testing?

Several factors can lead to false negative results, including:

• IgA deficiency, meaning your immune system simply doesn’t produce enough IgA so may not show a reaction.
• One test being positive and another negative, leading to dismissal of symptoms
• If tTGA or IgA test comes back negative it may be a false negative
•  The immune pathway triggered by gluten not being the one tested

Think of the immune system like a defence force—police, army, navy, air force, and special forces. Gluten may activate one branch, but standard tests only check one or two. If the wrong area is tested, the reaction is missed.

Another key issue: most tests only look for a reaction to one gluten peptide (gliadin MER 33). There are many others. Research suggests this could result in up to 50% false negatives.

Are There Better Ways to Test for Gluten Sensitivity?

Yes, there are other ways of establishing if gluten is an issue. Cyrex Laboratories offer one of the most comprehensive assessments available. Their Array 3 test checks 32 different markers of gluten reactivity, providing a much clearer picture.

Why Isn’t This Test Available on the NHS?

Simply put: cost. The test is expensive and the laboratory is based in the US.

Can I Just Eliminate Gluten From My Diet?

Absolutely—this is an inexpensive first step but I don’t recommend you jump right in without support.

However, a healthy gluten-free diet requires more thought than just cutting out bread and pasta. Gluten hides in many foods, and for those who are sensitive, even trace amounts can trigger an immune response.

With the right guidance, going gluten-free is very achievable and often life-changing.

 But There’s an Important Catch…

Eliminating gluten doesn’t always tell the full story. And it’s really important to establish if something else is causing symptoms.

Your symptoms may be caused by:

• Gluten
• Wheat
  
• High-FODMAP foods (particularly fructans one of the sugars in the food that break down lower down in the gut and are naturally fermented by gut bacteria.)

By cutting out gluten, you also reduce FODMAPs, which can improve bloating and discomfort. However, this doesn’t confirm whether gluten itself is the issue. You may end up avoiding foods unnecessarily or making your diet more restrictive than needed.

It’s also possible to react to wheat but not gluten, meaning you could still tolerate barley, rye, or oats.

Getting to the Root Cause

• By working with me, we can:
• Improve your digestive health
• Identify whether gluten, wheat, or FODMAPs are the true trigger
• Address the underlying cause—not just the symptoms

Restoring gut health often leads to improvements across the body, helping to relieve fatigue, brain fog, joint pain, and other ongoing issues.

If you’re ready to explore what’s really behind your symptoms, support makes all the difference.

Case Study:

This is my daughters’ story.

J went through a very stressful time for various reasons in her mid-teen. She 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 this 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 become intolerable.  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 non-existant puddle and so on.  

However, it became worrying as they increased in frequency. Also 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!

Testing Time:

It was decided she should have a CD test through her GP. Whilst waiting for the results, we carried out some private testing including a gut-permeability test and a salivary cortisol test.  

The cortisol test clearly reflected the issue in her sleep pattern whilst the raised salivary IgA test in addition to the gut-permeability test both indicated 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.  Later we realised there was a psychological component to her gut issues that was to do with being bullied at school.

Update

Five 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!

If you are wondering if your symptoms or those of a loved one might be due to gluten, please do get in touch!