Am I coeliac or just sensitive to gluten?
A common question I get asked as a gut health naturopath is… am I coeliac or just sensitive to gluten? Often times someone presents to me in practice having read that removing gluten is good for their health, and they feel better off it. Or perhaps that they feel worse when they eat gluten, but they aren’t sure if they should remove it completely (or maybe they don’t want to remove it because it’s in their favourite foods!). Coeliac disease and non-coeliac gluten sensitivity (NCGS) are on the rise in my clinic and often patients are unaware that this may be contributing to the multitude of symptoms they are experiencing.
Coeliac Disease
In Australia, there are approximately 355,000 people currently diagnosed with Coeliac disease. That’s 1 in 70 people and alarmingly, 80% of these cases didn’t know they had it.
Coeliac disease is a condition whereby your immune system attacks and damages the tiny tubules that line your small intestine, promoting inflammation and destroying the villi that are essential to you absorbing your nutrients. This is because your immune system is responding abnormally to gluten, a protein found mainly in wheat, barley and rye products. If left undiagnosed and untreated, this condition can have serious consequences on your health.
You must have the gene to develop Coeliac disease, but not everyone with the gene develops the disease. It appears to be triggered by lifestyle and stressors - even things we might not traditionally consider stressors such as pregnancy and surgery.
Non-Coeliac Gluten Sensitivity
The prevalence rate of non-coeliac gluten sensitivity is not accurately measured due to the incidence of self-reporting, but it is suspected to be higher than that of Coeliac disease.
It is simply harder to measure because there are no specific tests or genetic profiles associated with gluten sensitivity.
So while you might have been told gluten is fine for your body because you don’t have the Coeliac gene, all it really means if you won’t develop Coeliac disease - not that your body can handle gluten!
Research has shown that gluten, even in healthy guts, causes an increase in permeability for at least 20 minutes after eating it. Ie, gluten gives you leaky gut temporarily with every exposure. So imagine you have leaky gut for additional reasons (such as a microbiome imbalance), then you add gluten into the mix.. well of course your gut isn’t going to be thrilled about it, and you may get a worsening of symptoms.
What are the types of symptoms you might experience with gluten sensitivity?
The severity and type of symptoms can vary greatly from patient to patient. As with all sensitivities and exposures, we all have an individual tolerance level before our digestive system is compromised.
How you react to gluten is not always indicative of your gluten susceptibility or the extent of damage to your villi. Often people have very little understanding of how varied symptoms can be and that they may not just be limited to those coming from the gut.
Some of the symptoms you may experience on gluten exposure include:
IBS type symptoms e.g. diarrhoea, constipation, bloating, abdominal cramping/pain, excessive flatulence/wind, nausea and vomiting
Persistent and unexplained fatigue
Joint pain
Malnutrition and nutritional deficiencies e.g. iron, B12, folate
Osteopenia and Osteoporosis
Unexpected weight loss
Unexplained fertility issues
Severe or persistent mouth ulcers
Failure to thrive in children
Autoimmune conditions e.g. Type 1 Diabetes, Thyroid conditions such as Graves or Hashimotos
Unexplained persistently raised serum liver enzymes
A loss of co-ordination or balance
Associated peripheral neuropathy e.g. tingling, numbness, pins and needles sensation in arms or legs
Brain fog
Migraines
Seizures
Skin rashes, eczema, psoriasis
Testing for Coeliac Disease
There are several tests that you can do but they may not be conclusive as a standalone test, and you may require multiple tests to confirm whether you have Coeliac disease or not.
Coeliac serology blood test
This is the most common test undertaken by doctors routinely and measures your Transglutaminase IgA (tTG-IgA) and Deamidated gliadin peptide IgG (DGP-IgG) antibodies. These are markers in the blood that are produced by the immune system against an enzyme that repairs damage in your body (tTG-IgA) and against the main protein contained in gluten called gliadin (DGP- IgG).
This test can have a low sensitivity rate and ideally you must be consuming 3-6gms of gluten daily for at least 4 weeks before doing the test for it to be validated. On its own, it is not diagnostic but one I often see my patients refer to as their only screening for this condition. In these cases, more investigation is usually required.
HLA-DQ2 & HLA-DQ8 genotyping
Everyone inherits HLA-DQ genes from their parents when they are conceived. There are many different types of HLA-DQ genes but currently research indicates the HLA-DQ2 and HLA-DQ8 gene variants, that increase your risk of developing coeliac disease. The HLA DQ2 gene is the most common one with 90% detected in coeliac patients and only 8% of patients are positive to the HLA DQ8 gene.
There are also different versions of the HLA-DQ2 gene that further increases your risk for developing coeliac disease such as HLA-DQ2.5. This HLA variant has the highest genetic risk for developing Coeliac disease. The good news is though, if you are negative for the DQ2/DQ8 holotypes you have a less than1% chance of developing Coeliac disease.
As genetics can be complicated, it is best to work with a qualified health professional to determine your actual risk and what you can do to about it.
Small bowel biopsy via endoscopy
This is the gold standard test to diagnose Coeliac disease and involves a simple procedure whereby a flexible tube is inserted through the mouth into the stomach and intestines. During the procedure a small tissue sample is taken and sent to the lab for analysis to check for damage to your villi. If the results come back positive this means you have Coeliac disease and will need to start treatment.
Non coeliac gluten sensitivity testing
There currently is no biological marker for diagnosing non-celiac gluten sensitivity and it is generally diagnosed through a process of elimination. A formal diagnosis however can be done via a labour‐intensive double-blind, crossover dietary challenge with gluten or wheat and a placebo phase over a course of 8 weeks. As this is rarely undertaken patients are diagnosed after screening for Coeliac disease and if still undiagnosed filtered into similar treatment options as Coeliac patients to determine if symptoms resolve.
What if it’s not Coeliac disease? What else could it be if I’m not Coeliac?
If your results rule out Coeliac disease or are unclear, the following conditions should also be investigated as they can cause similar symptoms:
Inflammatory bowel disease e.g. Crohn’s disease and Ulcerative colitis
Irritable bowel syndrome
Diverticulitis
Dysbiosis and intestinal infections
Small Intestinal Bowel overgrowth (SIBO)
There are various testing options for the above conditions that can be undertaken which are outside the scope of this blog but can be discussed further within an individualised consult.
Treatment options for Coeliac Disease
Treatment for Coeliac disease entails a strict lifelong gluten free diet, as this is the only way to reduce inflammation and further damage to the villi in the small intestine. This means taking out completely foods that contain the following grains because even miniscule amounts of gluten can be damaging, even if they don’t cause symptoms:
Wheat
Barley
Bulgur
Durum
Farina
Graham flour
Malt
Rye
Semolina
Spelt (an ancient form of wheat)
Triticale
Oats – these are processed in factories with oats so can be cross contaminated
Gluten can also be hidden in foods, medications and other products we are exposed to. They can be disguised as modified food starches, preservatives, food stabilisers, prescription and over-the-counter medications, vitamin and mineral supplements, make up such as lipstick products, toothpaste and mouthwash, hair care products and even play dough. It is important to read your labels and understand the many faces of gluten to help reduce your exposure and symptoms.