I have experienced symptoms such as bloating, diarrhoea, muscle cramps and joint pains for years. My practitioner thinks I may be allergic to gluten. Although he has offered a blood test, he says the only way to diagnose it properly is through a intestinal biopsy. Is this the only way to obtain a proper diagnosis? I would also like more general information about coeliac disease. CL, Manchester........
Coeliac disease is an autoimmune disorder; it is also a disease of malabsorption. Individuals with coeliac disease cannot tolerate gluten, a protein found in many grains such as wheat, rye, barley and possibly oats. When coeliacs eat food containing gluten, their immune system begins attacking and causing damage to the tiny fingerlike villi on the lining of the small intestine. Nutrients are absorbed through these villi, and without them a person becomes malnourished, regardless of the quantity of food eaten.
It is one of the most common diseases in Europe: in Italy, for instance, about 1 in 250 people suffer from it; in Ireland, 1 in 300.
Grain based diets are a relatively new phenomenon in human civilisation. Scientists who have studied the evolution in human diet believe that the increasing frequency of coeliac disease is related to the fact that our diets have evolved faster that our systems can cope with. Our hunter gatherer ancestors were unlikely to eat large amount of grains.
Some believe that overconsumption of gluten may be one of the most potent carcinogens, responsible for the increased incidence of malignant cancers in our society. For instance, in Australia, Dr Chris Redding documents the treatment of five cancer patients with depression (see Your Family Tree, New Canaan, Conn: Keats, 1988). He tested for food allergies and subsequently withdrew gluten containing food from their diets. All five patients experienced a total remission in their cancers. Other researchers have also demonstrated this effect (Lancet, 1991; 337: 1373).
There is some speculation that environmental factors such as viral infection and parasite infestation play a part in its development. But many believe that the true coeliac has a genetic disease which does not always show from infancy. Sometimes it is triggered or becomes active for the first time after surgery, pregnancy, childbirth, viral infection or severe emotional stress.
Some people are more prone to coeliac disease than others. For instance, the frequency of coeliac disease is some 43 times higher in children with Down's syndrome than in those without. Giving these children a gluten free diet often relieves persistent diarrhoea and failure to thrive (Gastroenterol, 1995; 108 (supp 4): A16; Ped Gastroenterol Nutri, 1990; 10: 41-3).
What makes general diagnosis difficult is that coeliac disease affects different people differently. One factor thought to play a role in its development is whether and for how long a person was breastfed the longer an infant is breastfed the later the symptoms tend to appear and the more atypical the symptoms. Other factors include the age at which gluten containing foods were introduced into the diet. Also, symptoms are not always confined to the digestive system.
While one person may experience bloating and diarrhoea, another may experience depression and irritability. In fact, in children irritability is one of the most prominent symptoms, and it is thought that there is a link between attention deficit hyperactivity disorder (ADHD) and gluten intolerance. Studies have shown that children with ADHD often have abnormal brain wave activity. When taken off gluten diets, their EEG readings return to normal and symptoms eventually subside, though abnormalities can persist for up to a year (J Orthomolec Med, 1990; 5: 223-239; Zeitschrift Klin Medizin, 1985; 40: 707-9; Psychiatria Polska, 1991; 25: 130-4).
Adult coeliacs are also more prone to mental and psychiatric disturbances (Scand J Gastroenterol, 1982; 17: 25-28). Schizophrenics often respond well to a gluten free diet (Science, 1976; 191: 401-2; J Orthomolec Med, 1990; 5: 223-39; Am J Psychiat, 1973; 130: 685-6). It is also thought that gluten sensitivity may be behind some form of demyelinating disorders such as multiple sclerosis (Neurol, 1980; 30: 245-9). In one study, 57 per cent of those with neurological problems of unknown cause also had antibodies to gliadin (a component of gluten). Sixteen per cent had coeliac disease a much higher level than would normally be found (Lancet, 1996; 347:369-71).
A diagnosis of coeliac disease based on symptoms alone is also difficult to make because its symptoms mimic so many other diseases, including IBS, Crohn's, ulcerative colitis, diverticulitis, intestinal infections, ME and depression.
People with coeliac disease can tend to have other autoimmune disorders, such as thyroid disease (Can J Gastroenterol 1995. 9: 242-6; Clin Diag Lab Immunol, 1996; 3: 143-6), dermatitis herpetiformis, lupus, diabetes and arthritis.
To confuse things further, some individuals with coeliac disease may not have symptoms at all since the undamaged part of the intestine may be absorbing enough nutrients to prevent their appearance. Nevertheless, people who are asymptomatic are still at risk from the complications of coeliac disease, which include anaemia, intestinal cancer, osteoporosis (Arch Intern Med, 1997; 157: 1013-16; Bone, 1996; 18: 525-30), miscarriage and congenital malformations, infertility (Digestion, 1994; 55: 243-6; Scand J Gastroenterol, 1982; 17: 65-8; J Clin Gastroenterol, 1990; 12: 37-9), poor growth and epileptic seizures (Lancet, 1992; 340: 439-43; Child Nerv Syst, 194; 10: 450-4; Neuropediatrics, 1992; 23: 214-7; Lancet, 1992; 340: 439-43; Epilepsia, 1992; 33: 476-81).
Coeliac disease is still not a popular diagnosis among conventional doctors. According to the Celiac Disease Foundation in America, doctors will diagnose almost anything before they will consider a diagnosis of gluten intolerance (Celiac Foundation Newsletter, Fall 1996). The top 20 favourite misdiagnoses are (from top to bottom) anaemia, psychological stress, nerves or imagination, diarrhoea, IBS, diabetes, spastic colon, ulcers, virus, chronic fatigue syndrome, weight loss, allergies, parasites or infestation, gallbladder disease, thyroid disease, cancer, colitis, cystic fibrosis, lactose intolerance and reflux.
Recently, researchers have discovered that people with coeliac disease have higher levels of certain antibodies antigliadin, anti endomysium and antireticulin in their blood. For some, a blood test revealing high levels of these antibodies is enough.
However, to confirm intestinal damage you may need a further test in the form of a biopsy. To do this, your physician will use an endoscope passed through your mouth and throat into the small intestine and take a sample of tissue. If the biopsy reveals damaged tissue, then the diagnosis is supposedly inarguable. There are problems with biopsy, however, since flattened mucosa can be an indication of another disease with similar symptoms, and damage to the intestine can be patchy. Your doctor may end up taking a sample from one of the healthy areas in an otherwise damaged gut. This is why it is sometimes recommended to take several tissue samples from different areas of the small intestine.
Unless there is a pressing reason for you to have them, you may wish to forgo invasive tests and simply give up gluten foods. If your symptoms disappear, that's a good indication that gluten was the problem. The only treatment for coeliac disease is to give up food containing gluten, and this will require a life time commitment to this regime. Be particularly careful about advertising claims for species of wheat such as spelt. Although spelt is an ancient variety of wheat, it belongs to the same genus (Triticum) as the wheat commonly used in bread making. The same is true for Polish wheat, or Kamut. Individuals who have had no problems with these varieties in the short term have been known to relapse eventually. You will also need to be extremely vigilant about meals which you do not prepare yourself, such as work lunches, party foods, restaurant and pre packaged foods.
There is debate about which foods are considered safe, and which are not. Some believe that all grains should be excluded from the diet. Others argue that grains which are not of the same family line as wheat, such as rice, corn and oats can be allowed. The best advice is to first remove all grains and then one by one reintroduce those grains which are considered "probably safe". Be aware, though, that it can take a long time for symptoms of relapse to appear in some individuals.
Removing gluten from your diet will stop symptoms, heal some of the damage to the intestine and prevent further damage. Some people experience immediate benefit in terms of relief from symptoms, although it can take three to six months to heal the intestinal villi or, in older individuals, as long as two years.
A small percentage of coeliacs do not improve on a gluten free diet. These people often have severely damaged intestines that cannot heal even after they eliminate gluten from their diets. This is known as refractory coeliac disease.