Sunday, 07 August 2022

For coeliac awareness week, the disease, cause and symptoms explained

I WAS out for dinner the other night with someone who suffers from coeliac disease.

While I was happily browsing through the menu, perusing and remarking upon all the fabulous options available to me, it became clear I was being rather insensitive.

There was a stark contrast between what was available to me and what was available to my companion.

Coeliac disease is a condition caused by an overreaction of our immune systems (autoimmune) to the presence of gluten.

Annoyingly for sufferers, gluten is contained in quite a lot of different foods. If my dining companion had strayed on to my menu options, replete with gluten-rich fare, they could reliably expect symptoms such as nausea, extreme bloating and diarrhoea within hours.

Gluten itself is an umbrella term for the type of protein found in certain cereal grains, most commonly wheat, rye and barley. It provides structure to foods containing these grains and can contribute to flavour and texture.

Normally, as we digest our foods, the body produces enzymes that break down the proteins to make them more agreeable to absorption in the intestines.

However, gluten is much more difficult for these enzymes, such as protease and peptidase, to break down. So it is that the gluten carries on through our digestive systems relatively intact. For most of us, no problem but for someone unfortunate enough to suffer from coeliac, when the gluten gets to our small intestines, it activates our immune system to act against it, causing inflammation in the lining of the gut.

It is this inflammation that causes a lot of the symptoms. In addition to those mentioned above, one might experience wind, constipation and abdominal discomfort.

Indeed it is this discomfort that led to the modern naming of this condition. Coeliac comes from the Greek koiliakos, meaning “abdominal”.

Before the introduction of a grain-based diet, thought to have become commonplace around 9,500 BC, humans probably didn’t really suffer from coeliac disease.

But from then on it gathered momentum and the first reports of what was probably coeliac go back to around 200 AD when a physician called Aretaeus of Cappadocia reported all of the above symptoms in one of his patients.

Jump forward to 1856 and a translation of his description of a “coeliac affection” caused the more widespread use of the name.

It became clear soon after this that adjusting the diet in various ways could alter the course of the disease, although recommendations as to what to eat and not to eat varied wildly.

There was a drive for sufferers to eat only bananas in Twenties America before the link with wheat was made in 1940. This was noted by a Dutch physician whose patients suddenly improved during a famine in which flour became scarce. Sure enough, they all deteriorated again once the famine was over.

It wasn’t until 1952 that the significance of gluten to the condition was identified.

It is thought that around one in 100 people in the UK and around Europe have coeliac disease.

Due to the fact that it is often overlooked or misdiagnosed (and the fact that often symptoms can be very mild or even non-existent), only around 30 per cent of those are currently diagnosed.

It’s worth pointing out that coeliac disease is not an intolerance. Although intolerances can occur with all sorts of foods and not just wheat or gluten, including things like lactose (for which one can develop a transient intolerance in uncontrolled coeliac disease), the condition is very much autoimmune-related.

As such, the test we tend to use to diagnose coeliac is a blood test. From this, we check an antibody called anti-Tissue Transglutaminase. The level goes up in someone whose body is mounting an immune response to gluten.

This test has a high false negative rate, however, because if someone is avoiding gluten the level will not be raised.

Thus for anyone who is suspected of suffering from coeliac disease but has stopped eating gluten, the recommendation is that they eat more than one meal containing gluten every day for six weeks or more before getting this test.

If the test is positive, the patient might then be referred on to the gastroenterology team who may perform an endoscopy, in which a camera is sent down the oesophagus, through the stomach and into the first part of the small intestine, which enables doctors to take a few biopsies of the lining of the gut. Again, if the patient is avoiding gluten, this will be pointless.

Unfortunately, due to the various pitfalls involved, it can take a number of years for a diagnosis and often the symptoms are put down to irritable bowel syndrome.

While this is also a common condition, if you have been diagnosed with this but not checked for coeliac, it would be worth talking to your doctor.

Once you have been diagnosed, the best and only real treatment is to avoid gluten. There are no medications to add to that equation.

This can be a real pain as gluten is everywhere — breads, pasta, cakes, biscuits, sausages, gravies, sauces and even some chocolates.

Over the years, eating out has been very difficult and prescriptions for gluten-free foods were available on the NHS. However, funding has been removed for such prescriptions in many areas.

One can take solace in the fact that gluten-free food is far more widely available than it once was. There are even phone apps which scan barcodes on food labels to check for gluten status.

Add to that, restaurants are more clued up and indeed required to offer gluten-free menus.

Speaking to my friend, however, there is clearly still a long way to go. While certain establishments have it sorted, many others haven’t and there is still a lot of chefs out there with a surprisingly poor understanding of the requirements.

Food prepared using the same utensils and on the same boards as non-gluten free foods can be easily contaminated and that is often all it takes to make the following few hours extremely unpleasant for their coeliac diners.

It is important to stick to a strict gluten-free diet, even if your symptoms are mercifully mild. Inflammation in the gut often leads to malabsorption of essential nutrients, causing deficiencies in various vitamins as well as causing iron deficiency and anaemia.

All of this can make one feel extremely tired and prevent growth in younger people. Over time, it may also predispose to things like osteoporosis and some forms of small bowel cancer.

By keeping gluten-free, most people will be feeling better after a few weeks but it can take anything from six months to five years for the intestines to heal fully.

If you are concerned about whether some of this may apply to you, it might be worth getting in touch with your doctor. It is worth remembering that coeliac disease can present at any time and often will do so after the age of 50 so don’t discount it on the grounds of age.

Although there are various factors, there is a clear genetic element with around a one in 10 chance of a close relative also being affected, so bear that in mind.

It would be worthwhile to check various online resources, such as www.coeliac.org.uk, which have information and recipes for gluten-free foods. It just so happens that their coeliac awareness week starts on Monday so spread the word.

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