There's more to coeliac treatment than going gluten free...
Coeliac disease (CD) is a chronic inflammatory autoimmune disease affecting the mucosal lining of the small intestines.
It is triggered by a protein found in some grains, called gluten.
If you have coeliac disease, you likely experience gastrointestinal symptoms such as bloating and diarrhoea or constipation.
But coeliac disease can present elsewhere in the body too, which is one of the reasons why it is believed to be hugely under diagnosed, and this is where a Functional Medicine approach to coeliac disease can help.
Table of Contents
Coeliac disease is associated with non-gut symptoms such as:
Complete avoidance of gluten is difficult, considering it is so widely present in foods and other products like cosmetics, and even traces of gluten can trigger symptoms.
Complete avoidance of gluten, which is the only treatment offered by conventional medicine, can resolve symptoms completely in some people with coeliac disease.
But unfortunately many people continue to experience symptoms despite avoiding gluten.
A study in Finland of 596 adults with coeliac disease (2) demonstrated that up to 25% suffered persistent symptoms, either by ingesting gluten accidentally, or due to imbalances in the digestive system that were caused by, or associated with, the disease.
A Functional Medicine approach to coeliac disease goes beyond just gluten avoidance, also helping by supporting the repair of the intestinal tract and optimisation of digestive health, as well as addressing other imbalances caused by coeliac disease such as nutrient deficiencies, systemic inflammation, a ‘leaky gut’ and fertility issues.
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What is coeliac disease?
Coeliac disease is caused because your body develops an immune reaction to gluten, which is a protein found in three grains – wheat, rye and barley.
Gluten is also present in spelt, which is a type of wheat.
Coeliac disease is not an allergy (which would cause a high level of IgE antibodies) or a food intolerance (which would cause a high level of IgG antibodies).
Coeliac disease is an autoimmune disease, whereby the immune system is ‘attacking’ normal cell structures in the intestinal tract and causing damage.
This in turn affects nutrient absorption.
Ongoing malabsorption of important nutrients can contribute to a wide variety of other chronic conditions, other autoimmune conditions and in severe cases can lead to malnutrition (3,4)
Coeliac disease is estimated to affect around 1.4% of the global population.
This figure is based on coeliac disease blood tests.
Coeliac disease can also be diagnosed on the basis of a biopsy (where a sample of the intestinal cells is checked for damage) and based on biopsy test results, around 0.7% of the population has coeliac disease (5).
In a conventional medical setting, diagnosis of coeliac disease can be difficult, and only an estimated 30% of people are properly diagnosed (6).
The problem is that coeliac disease doesn’t always present with gut symptoms, and this is where the advanced testing we use in a Functional Medicine approach to coeliac disease can really make a difference.
If coeliac disease presents with extra-intestinal symptoms (symptoms not related to the intestinal system) then it’s likely coeliac disease won’t be explored as the cause.
The incidence of coeliac disease is highest in females and children (7) and there appears to be a familial link, meaning if a family member has coeliac disease, you have an increased chance of developing it too.
1 in 10 people who have a family member with coeliac disease, will also have coeliac disease (8).
People with coeliac disease are genetically predisposed to the condition, and these same genes are also associated with other autoimmune conditions.
Therefore, if you have coeliac disease, the likelihood of developing a second (or third) autoimmune disease is higher.
How does gluten cause coeliac disease?
When gluten is consumed and enters the small intestine, your body begins to break it down.
But due to a misfiring of the immune system, this gluten protein is seen as a threat by your immune system.
Your body then mistakenly mounts an immune response, to try and eliminate the threat.
However, in doing this the immune system causes some collateral damage to the normal cells in the small intestinal tract, in particular the millions of microvilli that line this area.
These microvilli are tiny finger-like projections that contain a network of blood vessels designed to absorb the nutrients from digested food.
Once these villi are damaged by gluten consumption (9), they atrophy (flatten), and your body is unable to properly absorb nutrients from the food you consume.
This is how, in the long term, micronutrient deficiencies can occur.
Nutrient deficiencies can go undetected but can lead to an array of symptoms which we discuss below.
Common nutrient deficiencies include vitamin B12, vitamin B9 (folate), iron and calcium (10).
This means that those with coeliac disease have an increased risk of developing osteoporosis (due to low calcium) and anaemia (due to low iron, or low vitamin B12 or B9).
As well as damaging the microvilli on the intestinal mucosal cells, there is extensive research on the role that gluten has on increased intestinal permeability (‘leaky gut’).
Gluten affects a peptide called Zonulin (11) which is essentially the gate keeper of the ‘tight junctions’ in the wall of your intestinal tract.
When Zonulin levels are high, the intestinal wall becomes more permeable, which in turn further drives an immune response and inflammation.
These are factors that we always consider in our Functional Medicine approach to coeliac disease.
And here’s a more in-depth graphic the relationship between increased intestinal permeability and autoimmunity:
Antibodies to gluten
Wheat actually contains several different types of proteins:
When wheat is consumed, enzymes in the digestive tract called tissue transglutaminases (or tTGs) help break down the wheat compound.
During this process, additional proteins are formed, such as deamidated gliadins and gliadorphins (also called gluteomorphins).
In those with coeliac disease, gliadin is thought to be toxic to enterocytes (intestinal cells) and is modified by this tissue transglutaminase (tTG) to allow gliadin to be presented to the immune system.
In coeliac disease, an inappropriate immune response to gliadin occurs, resulting in the body producing autoantibodies and inflammation, which damages the intestinal villi.
But people can, and do, react to several other components of wheat and gluten and therein lies the problem, because conventional lab testing for coeliac disease and gluten intolerance only screens for antibodies to alpha-gliadin and tTG.
In the Coho Functional Medicine approach to coeliac disease, we can test for all aspects of the wheat protein to see exactly what you are reacting to with a Cyrex Array 3 or coeliac screen through Regenerus Labs or Nordic Labs.
Coeliac disease: the genetic link
Coeliac disease can only occur in those who are genetically predisposed.
There are two genes for coeliac disease, and they are called human leukocyte antigen (HLA) DQ2 and DQ8 (13).
Having the genes for coeliac disease doesn’t mean that you will certainly develop coeliac disease, but it does mean there is the potential of doing so.
The gene would first need to be ‘switched on’ for the disease process to be initiated.
As with all autoimmune conditions, a lifestyle or environmental factor, is often involved in switching on the gene.
Some triggers for coeliac disease include an infection, high stress and dysbiosis in the microbiome that can lead to a loss of immune tolerance to gluten (14)
Gluten consumption itself is a trigger for coeliac disease.
Coeliac disease can manifest at any age, but earlier diagnosis has been shown to reduce the risk of developing other autoimmune or gluten-associated conditions (15)
Genetic testing to assess for a predisposition to coeliac disease is different to the blood test your doctor will do to see if you have coeliac disease.
Genetic testing for coeliac disease can be performed through several different labs that we routinely use at Coho Health, one example is the Coeliagen test.
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Signs & symptoms of coeliac disease
Signs and symptoms of coeliac disease can be broken down into two groups:
1/ Signs and symptoms that manifest in the gut – ‘gut mediated’
2/ Signs and symptoms that affect other areas of the body – ‘immune mediated’
Digestive symptoms (gut-mediated symptoms):
Systemic symptoms (immune-mediated symptoms):
The Functional Medicine approach to coeliac disease considers and investigates all of these symptoms, both gut and immune mediated.
The conventional medicine approach to coeliac disease
The main treatment offered in conventional medicine is a lifelong gluten-free diet.
With gluten avoidance, the immune system stops responding to gluten and this reduced immune response stops any further damage to the intestinal cells, reducing the risk of long- term complications of coeliac disease.
A gluten-free diet is recommended for everyone who tests positive test for coeliac disease, even if there are no obvious symptoms.
Continuing to consume gluten in coeliac disease can lead to more serious complications and more significant symptoms.
Can coeliac disease be reversed?
The short answer is no.
However, adhering to a strict gluten-free diet can stop any further damage.
Using tools available to us in the Functional Medicine approach to coeliac disease, we can help to repair the cells lining the intestinal tract, improve nutrient absorption, and resolve any associated symptoms.
Conventional testing for coeliac disease
The first test often performed is the IgA anti-Tissue Transglutaminase (tTG) antibodies test.
Sometimes your doctor may also test for total IgA at the same time, or they may test this only if the tTg antibody result is low.
Some doctors also test the IgA anti-Endomysial Antibodies (EMAs) which has a higher reported sensitivity rate for coeliac disease, with very few false positive results (16).
However, if you don’t produce enough IgA antibodies (have an IgA deficiency), then the above tests are invalid, and either the IgG antibodies are checked (IgG anti-tTg and IgG anti-endomysial antibodies) or you would be referred for a biopsy test.
A biopsy as part of a screen for coeliac disease, is performed by passing a small tube from the mouth to the small intestines, and a sample of the cells is collected and then viewed under a microscope for any signs of inflammation or villi damage.
The gold standard for a coeliac disease diagnosis used to be a biopsy of the small intestine to detect villous atrophy, but some consultants (if the tTG or EMA’s are very high) will take this as conclusive for a positive coeliac diagnosis (without the need to perform a biopsy).
The problem arises when conventional test results are negative for coeliac disease, but you still strongly suspect you have an issue with gluten.
In this case you may be reacting to gluten via a different mechanism.
The Functional Medicine approach to coeliac disease
If you have a diagnosis of coeliac disease, then there is no alternative first step – a strict gluten-free diet should be followed.
Gluten exposure in coeliac disease (or any gluten-related disorder) triggers an immune reaction and even 1% consumption of gluten, can still, for some, correlate with 100% of the symptoms.
Step 1 has to be 100% avoidance of gluten.
However, it is hard to give up gluten as it is EVERYWHERE – in bread, pastries, cakes, thickeners, sauces, gravies, baking powder, soy sauce, stock cubes as well as in some nutritional supplements, lip balms, body products, and many more cosmetic and home care products.
You might this list of ‘Hidden Sources of Gluten’ useful.
It can feel extremely daunting having to avoid gluten 100%, and we know this from our personal experience as well as through our work when helping clients on this journey.
However, it has become a lot easier in more recent years with shops stocking a wider range of products, and armed with good information, it’s possible to make this transition with ease.
A word of caution for products labelled ‘gluten-free’ however.
Firstly, they may not be ‘health foods’ and contain highly processed ingredients and sugars.
Secondly, some ‘gluten-free’ foods actually contain trace levels of the gluten that contribute to symptoms and persistent intestinal histologic damage.
This is generally true for most GF processed foods.
GF doesn’t mean there is zero gluten in the product, but the requirement by law is that the level of gluten in the product is below the minimum ‘accepted’ level.
In the UK, for example, a GF product must contain less than 20 parts per million (ppm) of gluten (17).
Realistically, if you consume many of these GF processed products in a single day, this could bring the total gluten consumption to a level that does cause a problem.
Research is ongoing into alternative treatments for coeliac disease that may not require a completely gluten-free diet, such as the use of probiotics to improve gastrointestinal symptoms, (18) and the use of gluten-degrading enzymes (19).
But for now you need to be 100% gluten free.
A useful test you can use to see if you are managing to be 100% gluten free, or to see if you have accidently consumed it, is the Gluten Detect, which can really help to ensure compliance.
Of course, for our clients, we support you on this journey, providing gluten free menu ideas and suggesting our tried and tested gluten free products.
While going 100% gluten free is ground zero, we go way beyond just removing gluten in our Functional Medicine approach to coeliac disease.
Coeliac disease: Functional Medicine factors
Whilst the conventional medicine approach starts and ends with gluten avoidance, the Functional Medicine approach to coeliac disease goes further to help restore normal function.
This is not only in the digestive system, but more widely in all the other body systems that may have been affected by this autoimmune process.
Some of the factors considered in a Functional Medicine approach to coeliac disease are:
Functional Medicine approach to coeliac disease: preventing & managing associated conditions
The risk of developing other autoimmune conditions is increased if you have coeliac disease.
This is due to the autoimmune diseases sharing the same predisposing genes.
For this reason, our Functional Medicine approach to coeliac disease considers the potential associated autoimmune diseases for each client, and we work in a preventative way to minimise risk.
The association between coeliac disease and type 1 diabetes is well established (20) and medical guidelines often state to screen for one, if the other is present (for example on a yearly basis).
In our clinical experience, however, we know that regular screening often isn’t the case.
Another commonly associated autoimmune condition, is autoimmune thyroid disease such as Hashimoto’s disease (21).
There is also a link with coeliac disease and autoimmune Addison’s disease (where the adrenal glands do not produce enough cortisol), with one study noting that Addison’s disease is 11 times more likely in coeliac disease patients compared to those without coeliac disease (22).
Sjogren’s syndrome, yet another autoimmune condition, is considered to be the most common rheumatic disorder associated with coeliac disease.
A study including 57 adults with an autoimmune condition called Antiphospholipid Syndrome (APS) that causes vascular thrombosis and pregnancy complications, found that 14% of the participants also tested positive for coeliac disease (23) (a much higher percentage when compared to the rate of coeliac disease in the general population).
As we mentioned earlier, there is an increased risk of anaemia and osteoporosis, in those with coeliac disease, due to the intestinal malabsorption of certain nutrients.
And approximately 10% of patients with coeliac disease, also have a lactose intolerance (24), so dairy foods can be a real problem and a driver for symptoms.
Gluten-free but symptoms not completely resolved?
This is where the gluten story becomes a little more complicated.
Firstly, we’d want to ensure that you don’t have any nutrient deficiencies associated with a damaged intestinal tract (caused by the immune response, before gluten was excluded).
Secondly, we’d want to ensure nutrient absorption is as optimal as it can be.
In coeliac disease it is more likely that you don’t produce enough stomach acid and/or digestive enzymes, compared to people without coeliac disease and this can significantly affect nutrient absorption and gut inflammation.
Thirdly, it is important to repair the damaged intestinal tract, thereby reducing inflammation, supporting a healthy immune response, reducing additional food sensitivities, reducing bloating, supporting bowel motility and much more.
If it seems like you are still reacting to some foods, and have that ‘glutened’ feeling, such as brain fog, fatigue, skin rash, or digestive symptoms, then an important and often overlooked factor, is considering gluten cross-reactivity.
This is where the immune system thinks other foods you are eating, are gluten containing foods.
This is because the immune system sees a small protein structure in other foods that looks similar to the protein structure in gluten.
It’s a process called molecular mimicry.
The immune response in these cases, is the same as if gluten was consumed, and so you continue to have gluten associated symptoms, despite not eating any gluten!
Luckily, gluten cross-reactive foods can be tested for.
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Identifying coeliac disease can be complex – your doctor may have run some tests for coeliac disease and your tTG has come back negative.
But you can still be reacting to gluten.
Comprehensive testing for coeliac disease and gluten issues is often a great place to start.
Perhaps you’re eating gluten but you don’t have any digestive symptoms, but you are suffering from crippling anxiety and thyroid imbalances.
This may make it difficult for you to identify gluten as the causative factor.
Or perhaps you’ve had the appropriate tests and don’t have coeliac disease, but another gluten associated condition.
Getting to the root cause of your health issues and identifying underlying imbalances is our priority and then we can effectively guide you back to full health.
Functional testing helps us to understand the type of reactions you’re having and what underlying imbalances exist.
Imbalances can include nutrient deficiencies, or could be thyroid hormone imbalances, or a gut microbiome imbalance.
Assessing and addressing factors that could have switched on your genes for coeliac disease in the first place helps us to prevent any further coeliac disease associated conditions.
This comprehensive Functional Medicine approach to coeliac disease means that not only can we optimise your digestive system, but we can help you to support your whole body and your future health and well-being.
To your optimised, healthy future,
Lulu & the Coho Health team
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