“Eating a strict gluten-free diet is not in any way optional for those of us who have coeliac disease.”
Our bodies react to tiny amounts of gluten as though they were poison, provoking our white blood cells into producing antibodies that cause serious damage to our intestines and may set off a systemic domino effect of internal destruction.
“The good news is that it is possible to halt this chain of degradation, and reverse much of the damage done. The key is to eliminate gluten entirely from our diets every day of our lives”.
“No gluten, no coeliac”.
What is gluten?
“Gluten is the name given to proteins found in wheat and some other grains such as barley and rye”.
The word comes from the latin word for glue, which is appropriate as it is gluten that gives dough its elasticity, it helps bread rise and gives it its characteristically chewy texture. This is why grains with higher levels of gluten are typically used in many of the baked foods we like to eat and may be one of the reasons gluten sensitivities are increasing.
How easy is it to cut out gluten?
“Even minute amounts of gluten – far less than a crumb of bread – can cause problems for people who are coeliac”.
Eliminating gluten from a diet sounds easy – surely all you have to do is avoid bread? We soon found that it isn’t nearly as straightforward as that. Like many people, when we first started out on this journey, we were completely unaware that gluten lurks in so many manufactured and even minimally processed foods where the foods themselves don’t naturally contain any gluten. Legislation concerning labelling has made things easier, but there is no way round reading the labels of any tin, bottle or packet you use.
“We found the only way to protect ourselves was to read widely, and to check everything”.
What is Coeliac Disease?
“Coeliac disease is an auto-immune disorder caused by an intolerance to gluten”
Coeliac disease (or celiac as the Americans spell it) is often thought of as an allergy – which it isn’t. Instead it is a life-long auto-immune disorder caused by an intolerance to the proteins found in wheat, barley and rye. Less than 5% of coeliacs also react to avenin, the protein found in oats.
“Separate from it is non-coeliac gluten sensitivity, which can be as damaging to the body as coeliac disease”.
Why do coeliacs need to avoid gluten?
“When someone with coeliac disease eats gluten, antibodies attack the intestinal wall mistaking it for a foreign invader that needs to be destroyed rather than a vital organ of it’s own body”
Initially this damage is done to the millions of villi in the intestines, flattening the tiny finger-like projections that normally increase the surface area of the gut. Levelling the villi in this way dramatically reduces the intestines ability to absorb nutrients from food. When first diagnosed, coeliacs are often found to be severely malnourished and when often show signs of anaemia and vitamin and mineral deficiencies.
Damage to the villi also compromises the integrity of the intestinal wall allowing undigested foods and other pathogens to enter the bloodstream, causing high levels of inflammation both in the intestines and elsewhere in the body. Complex immune reactions may also prime other organ specific antibodies into attacking other tissues and organs of the body including the nervous system and the brain.
“It may cause other autoimmune disorders such as thyroid disease, and type 1 diabetes”.
How long does it take to heal?
“Intestinal healing will normally begin as soon as gluten is entirely removed from the diet”
The time this takes varies depending how much damage has been done but, encouragingly, you may find you start to feel better within the first week or two of strict exclusion of gluten. After three months blood tests should show that the antibodies have disappeared.
How long it takes for the intestines to recover depends on how far progressed the damage was before diagnosis. If a biopsy is undertaken the damage will be graded between 0 and 3 on the Marsh Scale (the latter divided into A-C). At 3C, the highest end of the scale indicating complete flattening of the villi, it may take over three years of strict exclusion of gluten for significant recovery and intestinal healing. Intermediate damage may take in the region of 18 months.
The risk of complications arising from coeliac disease return to normal after 3-5 years on a strict gluten free diet.
How common is it?
” Around 1% of the population world-wide has coeliac disease”
Unsurprisingly the incidence of coeliac disease varies depending on geography and ethnicity. Even within Europe there are wide disparities, with a prevalence of 2% in Finland and 0.3% in Germany. Research indicates that some of the highest incidences, reaching over 1.5% of the population are in Scandinavian countries, the Netherlands, Ireland and the UK. Studies suggest that it may be in the region of 1 in 105 in North America, and 1% in Australia and New Zealand, although research suggests that, along with other some other auto-immune diseases, particularly Type 1 Diabetes, it is rapidly rising in all Western countries.
A further 6-10% have varying degrees of gluten intolerance.
Who contracts Coeliac Disease?
“It is a hereditary condition”.
It can arise at any age, from babies to the most elderly, but generally only in people who carry the HLA DQ2/HLA DQ8 gene sequence, testing for which can be done using a sample of saliva or blood. Without this genome a person cannot develop coeliac disease irrespective of how much gluten they eat.
Whilst it affects all ethnic groups and is common in Europe, North America, India, Pakistan, North Africa, the Middle East, Australasia and South America, the incidence of coeliac disease outside Europe has been found to be higher amongst populations originally of European extraction such as those of Australia and New Zealand.
Recent research has shown that coeliac disease is more common in ethnic Chinese populations, than once thought particularly in the Eastern coastal provinces of Jiangsu and Zhejiang. It is still rare in Japan and sub-saharan Africa.
Does it run in families?
“Having a first-degree family member who is coeliac increases the chances of developing it to around 10%.”
In identical twins there is a 75% chance that the other twin will develop the disease, underscoring the importance of the genetic basis for the disease.
Is the gene alone enough?
“To activate this complex disease there also needs to be a trigger”.
Such triggers have been found to include stress, pregnancy, trauma, viral infections such as rotavirus or taking medications that damage the intestines (such as aspirin, paracetemol and ibuprofen). The organization Coeliac Australia notes that while 30% of the Australian population carry one or both of the coeliac genes, only around 1% will go on to develop the disease. This observation, along with recent research in Finland and Karelian Russia, indicates that environmental, lifestyle and dietary factors play a part in activating coeliac disease.
What are the symptoms?
“Part of the reason it is wildly under-diagnosed is that it can present itself in so many different ways and commonly may even not produce any symptoms at all and, outwardly at least, be ‘silent'”.
The World Gastroenterology Organisation suggests that almost 50% of newly diagnosed patients are asymptomatic. Otherwise patients can present themselves with problems as disparate as intestinal pain, diarrhoea, steatorrhea, constipation, weight loss, bloating, joint pain, osteoporosis, infertility, depression, anaemia, fatigue and headaches some of which don’t point to intestinal damage. It seems that coeliac disease may also be discovered by chance when medical practitioners investigate the symptoms of another auto-immune disease.
On first diagnosis, coeliacs are often found to be severely malnourished. Typically they are found to have very low levels of minerals and vitamins, including folic acid, zinc, vitamin A, vitamins B6, B12 and vitamin D, and iron, resulting in anaemia in many.
How long does it take from onset of symptoms to diagnosis?
A study showed that most coeliac patients in North America had visited 5 or more doctors taking 10 years or more for them to be properly diagnosed. Researchers found when studying random blood samples that coeliac disease is massively under-diagnosed suggesting that only one in 53 people have been properly diagnosed in North America. This has led coeliac disease to be named an’ iceberg’ disease as so much of it is undetected. With the recent development of blood tests in place of invasive biopsies, and growing awareness amongst the medical profession of the myriad ways in which coeliac disease can manifest itself, hopefully these woefully long timescales will soon improve.
Why is it so seriously under-diagnosed?
“Part of the problem is that symptoms differ in type and severity and can affect a wide range of organs of the body”.
Conditions associated with reactions to gluten are as wide ranging as ADHD, autism, depression, epilepsy, neurological disorders, schizophrenia, rheumatoid arthritis and respiratory tract disorders as well as vitamin and mineral deficiencies or lactose intolerance. Patients are commonly initially misdiagnosed as having irritable bowel syndrome or Crohn’s Disease.
How is it diagnosed?
Diagnosis has recently been made simpler by the development of separate blood tests to test for the antibodies produced when gluten is eaten in someone who has coeliac disease. A small bowel biopsy to check the extent of damage to the villi may also be needed and remains the gold standard for diagnosis. In order effectively to test for the presence of the relevant IgA and IgG antibodies it necessary to have been consuming gluten in at least one meal a day for six weeks before testing. This is why doctors usually advise having this test before excluding gluten from the diet.
A different blood test is able to check for the relevant gene sequence which predisposes people to developing coeliac disease, and possibly gluten sensitivity. The test for the HLA DQ2 and HLA DQ8 genes, which are present in the genomes of those who go on to develop coeliac disease, can be done without adding or subtracting gluten from the diet, which means that this test can be done if you are already excluding gluten from your diet.
Has there been an increase in the disease in recent years?
“Coeliac Disease has increased over fourfold in North America in the past 50 years”
Although a Greek physician Aretocus of Cappodocia is said to have noted symptoms similar to coeliac disease in the first century, (and in deference to him the designation coeliac is derived from the Greek word for ‘abdominal’), it wasn’t until as recently as the 1950’s that a Dutch paediatrian, Willem Karel Dicke definitively established a link between gluten and intestinal damage.
A recent Mayo Clinic study analysed well-preserved frozen blood samples from the 1950’s and compared them with present day samples of a population matched for age and other characteristics and found that the incidence of coeliac disease had increased 4.5 times since then. Similar research elsewhere suggests that such dramatic rates of increase are not simply due to improvements in methods of detection.
Why is this?
Over recent decades, varieties of wheat have been cultivated to increase yields and in favour of those capable of imparting lightness, elasticity and texture in bakery foods: coincidentally those are the ones containing more gluten proteins. Problems with gluten may also be exacerbated by the increase in consumption of breads, cereals, pastas, biscuits, cereals and cakes that were not available in such quantities to our ancestors. There is also speculation that the introduction of some genetically engineered grains may play a part. However, as a recent study in Finland has shown, this may be only part of the picture.
What is the treatment?
“Treatment involves a strict life-long avoidance of gluten”.
Is there any connection between coeliac disease and lactose intolerance?
Around half of coeliacs are initially lactose intolerant. Lactase, an enzyme that helps digest lactose, is produced by intestinal villi. Damage to the villi caused by coeliac disease means that lactase cannot be produced, leading to lactose intolerance and other food allergies. It may be helpful to eliminate dairy products until the intestine has regained its impermeability, after which lactose intolerance frequently improves.
What is the best way to avoid gluten?
The safest way to avoid gluten is to cook foods with fresh unprocessed ingredients or minimally processed foodstuffs where manufacturers have taken steps to ensure the foods they produce have not suffered cross-contamination. This way it is possible to know for certain that the small amounts of gluten that can cause a problem are not being inadvertently consumed.
Read more about how to avoid cross contamination here.
To learn more about gluten free substitutes, grain free flours, starches and grains, click here.
To learn more about what foods contain gluten, click here.
To read more about how to recognise gluten in nutritional labels, click here.
Photograph from the U.S. Department of Agriculture.