Celiac disease is a unique permanent autoimmune disorder where ingestion of gluten results in damage to the small intestine in some genetically predisposed individuals. It is unique because we know that gluten drives this auto-immune response.
This results in multiple nutritional deficiencies and manifests itself in various ways. There are more than 200 symptoms associated with celiac disease, which include but are not limited to:
Gastrointestinal: Chronic diarrhoea or constipation, vomiting, foul smelling stool, abdominal bloating /pain and failure to thrive AND/OR
Extra intestinal : Weight loss, short stature, iron deficiency anaemia, inability to concentrate, dermatitis herpetiformis, mouth ulcers, dental enamel defects, chronic liver disease, osteopaenia, osteoporosis, migraines, tingling or numbness in hands or feet, delayed puberty, infertility and frequent miscarriages.
Many patients could be having mild disease or even be asymptomatic.
A triad of conditions are required for development of Celiac disease – genetic predisposition, gluten exposure and a trigger, which has not been identified yet. This trigger can get activated at any age and hence this condition may manifest itself for the first time anytime from infancy to 90 years of age.
Like many other parts of the world, celiac disease is suspected to affect 1% of our population too, especially in North India, where wheat forms the staple diet. So far, it is being diagnosed more often in children. Some individuals are at a higher risk of developing celiac disease than others: relatives of individuals with celiac disease, people with other autoimmune conditions and genetic conditions. The diagnosis rate is low at present but is increasing exponentially with increased awareness amongst the medical and the patient community.
The diagnosis of celiac disease is based on signs and symptoms, blood tests, biopsy and a positive response to the gluten free diet. tTG-IgA is the most commonly used screening blood test for this condition (total serum IgA test is also necessary since in IgA deficient people, tTG test will not be accurate and other tests will be needed).
Duodenal (intestinal) biopsy interpreted by an experienced pathologist is necessary for the diagnosis. It is important to note that gluten consumption for a period of 8-12 weeks prior to testing is essential to obtain an accurate result on the biopsy. A positive response to the gluten free diet confirms the diagnosis. Keep in mind that the tTG antibody is in itself not enough to make or refute the diagnosis of Celiac disease.
The treatment for this condition currently is purely dietary – eliminating gluten ingestion for life. Gluten is a protein found in wheat, rye and barley and intake of even a small quantity of this protein is not allowed. One bread crumb has 1000 times more gluten than permissible! Keep in mind that no part of the wheat grain is safe and there is no known process currently available that makes this soluble protein less antigenic and safe for consumption for these individuals. Oats are also considered unsafe for two reasons – one, it is very often contaminated with wheat and secondly, about 10% of individuals with celiac disease will not tolerate pure oats either.
The intestine starts healing after gluten is removed from the diet. The healing process may take a few months up to two years. However, the individual starts to feel better much sooner, mostly within 2 weeks. There is visible improvement in symptoms, especially gastrointestinal symptoms, as the intestine starts to recover. tTG count starts to reduce too, though it may take 1-2 years to normalize.
If undiagnosed or untreated, celiac disease can result in complications like anaemia, weakness, stunted growth, malnutrition, lack of stamina, liver disease, osteoporosis, infertility, cancer and can promote the development of other autoimmune conditions.
Likewise, accidental or intentional ingestion of gluten, even in small amounts, once in a while, may or may not result in immediate symptoms but can cause intestinal damage that can result in the above mentioned complications. It is therefore important to adhere to a strict lifelong gluten free diet and undergo the recommended follow up consultation, including an annual tTG test, to understand if there is any significant ingestion of gluten taking place.
There are many nutrient dense gluten free grains – jowar (sorghum), bajra (pearl millet), rajgira ( amaranth/ ramdana), ragi (finger millet/ nachni), makka (corn), kuttu (buckwheat) and rice,which are easily available in India and have been traditionally used in our regional cuisines. In addition, availability and usage of some of the inherently gluten free items like daals, vegetables, nuts, seeds and spices in our cuisines, offer huge variety of gluten free food options. But the lack of accurate knowledge about the presence or absence of gluten in packaged food products and lack of gluten free dining out options remain primary areas of concern in maintaining a strict gluten free diet for most individuals with celiac disease in India.
It will be our endeavour to continuously interact with the industry to impress upon them the need for gluten free labelling, availability of packaged gluten free products and safe dining out options.
Providing specialist support on gluten free diet to India’s first gluten free camp for children is our first initiative in this regard.
Watch this space to learn more about our other initiatives.