Coeliac disease is a lifelong autoimmune disease caused by the immune system reacting to gluten, the protein found in wheat, barley and rye, and in some cases in oats. It is neither an allergy to wheat nor a food intolerance, both of which are common misinterpretations. When a person with coeliac disease consumes anything containing gluten, the gut’s villi (the finger-like projections in the lining of the small intestine) become inflamed then flatten, leaving less surface area to absorb the nutrients in food.
As a consequence, an undiagnosed coeliac will often suffer from a variety of symptoms, including anaemia, bloating, stomach pain and cramping, diarrhoea, wind, constipation, nausea, vomiting, headaches, fatigue, mouth ulcers, skin rashes, weight loss (though not in all cases) and osteoporosis. Symptoms can differ between individuals, and a coeliac may have some but not all symptoms listed. Sometimes symptoms can be misinterpreted as IBS or wheat intolerance, and research conducted by Coeliac UK has found that the average time for a coeliac to be correctly diagnosed is 13 years. It is thought that 1 in 100 people in the UK may be coeliac but only 24% have actually received a medical diagnosis and there may be half a million people who are yet to be diagnosed.
If left untreated
Undiagnosed and untreated coeliac disease may lead to a diagnosis of anaemia, due to insufficient iron from your diet being absorbed. You may also be at risk of osteoporosis as your body has been unable to absorb sufficient calcium, even if you were eating a calcium rich diet.
It should be noted that if you are a type 1 diabetic, you are at a higher risk than the general population of having coeliac disease. The same is true of autoimmune thyroid disease. Undiagnosed coeliac disease can lead to lactose intolerance, and could in some cases lead to fertility problems. A serious complication of coeliac disease is lymphoma and small bowel cancer.
Coeliac disease can also run in families, and it is thought around 1 in 10 close relatives of coeliacs (such as their parents, siblings or children) will be likely sufferers as well. NICE recommends that close relatives of coeliac sufferers should therefore also be screened. If a close relative has received a diagnosis of being a coeliac, then it is recommended you too be tested.
If you identify with any of the typical symptoms listed earlier, the advice is to speak to your GP about being referred for testing. Your GP will arrange for a blood test to look for antibodies the body makes in response to the consumption of gluten, and if this highlights a reaction they should also refer you to a Gastroenterologist for an endoscopy with biopsy, when small samples of your gut lining will be collected and inspected for signs of damage.
The treatment for coeliac disease is a lifetime avoidance of any foods containing gluten. If gluten is reintroduced into the diet of a coeliac, the damage to their gut lining may occur again. Therefore, it is vital that those affected with coeliac disease avoid any risk of cross-contamination. It is recommended that coeliacs use separate breadboards, toasters, grills and even use different butter, jam and condiments than family members who are able to tolerate gluten.
Once a diagnosis has been received, a referral to a dietician will be made who will advise on what foods are safe to consume. It can take more than a year of avoiding gluten before your gut lining has recovered sufficiently, and in that time you may be prescribed vitamin or mineral supplements, as well as calcium and Vitamin D which is important for calcium absorption.
Unfortunately many foods contain gluten, and you will have to become adept at reading ingredients labels. Some food products which you would not assume would contain gluten in fact do. It has to be remembered that glutens can be found in beers (the grains used in its manufacture contain gluten), soups and sauces (to thicken the product), malt vinegar, some stock cubes as well as some grated cheeses, frozen chips, sausages and other processed meats. Thankfully, by law, food manufacturers in the UK must list in bold type any food allergens including wheat, rye, barley and oats, so they should be easily identifiable on food packaging.
Cost of gluten free
One of the main difficulties for coeliac sufferers is the increased cost of gluten free foods. Research conducted by Mintel in 2015 found the market for gluten-free foods in the UK was worth £210 million. However, there have been complaints that supermarkets and food manufacturers are exploiting coeliacs by charging more for gluten free products, in some cases by up to 200%.
In recent months, there have been stories in the press relating to the NHS prescribing gluten free foods to patients with one report stating the NHS paid out £116m on providing foods such as doughnuts and pizza. However, Coeliac UK responded to this story by reporting that in 2014 26.8m was actually spent on prescribing gluten-free products, equating to a cost of £180 per year for each patient diagnosed with coeliac disease. Since 2009, the number of those diagnosed as suffering from coeliac disease has risen by 14%, whereas the cost of gluten-free prescribing by the NHS has in that time decreased by 3.5%.