Frequently Asked Questions
It certainly has a genetic predisposition. The condition is known to run in families, and some patients without obvious symptoms are diagnosed much later in life, only when their relatives have been diagnosed with this condition. However, it is known that only 70 per cent of both identical twins have the disease (one of whom is diagnosed as positive). This reflects the fact that there may be other factors as well. It has also been reported that nearly 10 per cent of first-degree relatives have celiac disease. If two siblings are diagnosed, that potential doubles for other first- and second-degree members of the family. A relative with an autoimmune disease has up to 25 per cent chance of developing celiac disease. People who develop celiac disease, are usually born with the susceptibility to develop it.
Celiac disease is a lifelong autoimmune disease that requires strict adherence to a gluten-free diet throughout life. It may become asymptomatic after a period of time on a gluten-free diet. That does not mean one can outgrow celiac disease; it may recur in the form of other autoimmune conditions, malignancies, infertility or various complications. There have been some cases of complete remission, but even they need more long-term follow-ups.
Coping socially on a gluten-free diet
• Share your condition and restrictions with family and friends.
• They may or may not fully appreciate your problem. Some may urge you to eat small amounts of regular foods and think you are being too fussy. Be polite but firm about your non-acceptance.
• Don’t hesitate to ask your host or restaurant staff politely. If possible talk directly to the chef.
• Carry an ‘allergy alert’ card. • You may carry your own food. It is not impolite and others will understand. Be tactful and avoid a scene, as far as possible.
• If special food is made for you, give clear directions. Thank the chef or host, and show appreciation for the effort made on your behalf.
• Do not feel sorry for yourself.
• Look out for restaurants which offer gluten-free options.
• Select places that specialize in the kinds of foods you can eat. You may want to call the restaurant in advance and discuss menu options and your dietary requirements.
• Be a repeat customer. Visit the same restaurants so that you become familiar with their menus and the personnel get to know your needs. It also helps you to develop a good rapport with the owner/chef/headwaiter.
• Seek and share ideas. Ask members of your support group for names of restaurants that serve gluten-free food. If there are enough gluten-sensitive people in your community, it’s likely that restaurant owners will try to satisfy your needs. Continue to share with the support group the names of any restaurants that add gluten-free foods to their menus.
• Don’t be afraid to eat out.
So far, biopsy remains a gold standard for diagnosis of celiac disease. Nowadays, biopsy is safe and can be performed on small children as well. It is best to be completely sure about the diagnosis before you embark on a gluten-free regime for life. However, in future, with the introduction of highly sensitive serological markers (blood tests), there could be a revision in diagnostic guidelines for celiac disease.
No, gluten cannot be absorbed through the skin and cannot initiate or worsen celiac disease. Gluten needs to react with intestinal immune cells to initiate the inflammatory process. However, if a patient has dermatitis herpetiformis, glutencontaining products may irritate the skin, but will never cause dermatitis herpetiformis.
No, blood transfusion can neither cause nor protect from celiac disease.
No, usually just a gluten-free diet is needed. Vitamin and mineral supplements are beneficial. Alternative therapies for celiac disease are not yet established.
Maintenance of a strict gluten-free diet, if the disease is detected early in life, ideally before puberty, should result in the person achieving full growth potential. In those diagnosed before nine years, catch-up growth has been seen to be complete, independent of initial degree of wasting, dignostic delay and strictness of diet.
Most commercially available ice creams prepared by reputed manufacturers are generally gluten-free except the ones containing wafers or cookies or any similar special additions, which contain gluten. Check with the local celiac society to be sure of specific brands.
South Indian food is an excellent option for celiac individuals except that they have to watch out for semolina/rava/sooji preparations like rava dosa, rava idli, rava uttapam and so on. Always make your gluten-free need known to the attending staff.
Celiac individuals can have Chinese cuisine but need to avoid preparations containing soy sauce and oyster sauce. Also avoid regular noodles. Choose pure rice noodles or cellophane (moong bean) noodles or simply steamed rice. One may carry one’s own gluten-free soy sauce if possible.
Both buckwheat and polenta are safe for celiac individuals. However, buckwheat noodles may contain a little wheat, so ask for pure buckwheat noodles. Polenta is an Italian speciality made of cornmeal.
Most commercial varieties are malted and therefore not safe for celiac individuals.
Milk additives that contain malt or malt additives should be avoided.
Medicines and supplements may be hidden sources of gluten. Several international brands mention gluten-free status on labels of medicines and supplements. By law, the basic food starch found in medicines is corn. The same regulations do not apply to prescription drugs. So, while most drug manufacturers do actually use cornstarch when a binder is required, if the label does not specify this, you must check with the manufacturer or a pharmacist. In India, due to inadequate labelling laws, it is advisable to check with doctors, pharmacists, manufacturers or local celiac societies, wherever possible. This may be more important when certain medications/supplements are taken on a regular basis.
Initiation of a gluten-free diet leads to progressive clinical improvement and weight gain. The first signs of improvement include increased appetite and mood changes. After a few months, symptoms disappear completely and by the end of a year there is improvement in villous atrophy. Complete villous recovery may take longer.
Yes, with the amazing variation in the presentation of celiac disease, increase in number of diagnosed cases and availability of sensitive tests, mass screening must be advocated as a public health measure for timely diagnosis and prevention of unnecessary suffering. In fact, in India anaemia, diabetes and malnutrition are key health concerns.
Yes, absolutely. Make sure to contact the nearest celiac society in the city. Find out food service facilities and the staples of the area. Carry supplies of gluten-free flours and snack food initially, till you become familiar with your new surroundings. Inform your food service providers about your condition and carry your ‘eating-out’ celiac card whenever dining out. Fresh fruits, vegetables, pulses, rice, milk, yogurt, nuts, eggs and cheese are available easily in most places.
Yes, a gluten-free diet is healthy, provided you make the best use of the wide variety of gluten-free ingredients available. At times, it can be compromised on fibre but a good fibre intake can be maintained by including whole grains such as millets, brown rice, buckwheat, and pulses, lentils, beans, nuts, fresh fruits and vegetables. People with celiac disease must eat well to lead a healthy life. If you have multiple allergies such as for lactose, eggs, nuts, etc., consult a qualified nutritionist to plan a balanced diet.
Wheat grass as such is considered safe for people with celiac disease because it does not include the portion of the grain that contains gluten. However, the question of contamination with the grain still remains.
Most tooth-pastes are gluten-free. Lipsticks are the only cosmetics that people ingest in huge quantities. Often, those with long-lasting formulas contain wheat germ oil or other wheat-based products. Some lipsticks and glue in stamps may contain gluten. Avoid those that mention gluten as their ingredient and do not lick stamps. So, next time you buy lipsticks or glue-sticks, double check their gluten-free status by reading labels carefully or contacting the manufacturers.
Particularly in the initial stages after diagnosis, vitamin and mineral supplements may be needed, if one suffers from any nutritional deficiency. Taking a multivitamin daily should not be harmful, though consuming mega doses may be.
Remember, supplements are not a replacement for food; they are adjuncts and must be consumed under the guidance of a well-qualified physician. It may be a good idea to do routine blood tests to know your nutritional status and prevent deficiencies and toxicities.
Most cheeses are traditionally gluten-free. The only exceptions may be Stilton and Roquefort, which could contain gluten. Highly processed (non-blue) and low-fat cheeses may also contain gluten. Blue cheeses (Gorgonzola, Danish Blue) made with a chemical starter are generally safe. Check labels before consumption.
On the contrary, gluten-containing grains like wheat will not allow your child to grow. It is poison to celiac individuals. Withdrawing wheat and gluten-containing cereals will result in achieving growth potential.
Besides reading labels when in doubt, refer to your nearest celiac society. If required, one can get references of laboratories where testing for gluten is possible.
This question is often asked by silent celiac individuals who are usually detected later in life. On confirmation of diagnosis, it is mandatory to adhere to a strict gluten-free diet to prevent further damage to the intestines and serious complications, even though there may be a general sense of well-being or no marked symptoms.