Living with Celiac

This is a public-service column. It was inspired by a recent event on Celiac disease where the PTI’s Shafqat Mehmood presided with specialists, sharing awareness among those present. For those who are bona fide and fully Celiac categorized – this writer being one – this issue is a matter of life and death.

Here's how it goes and Pakistanis of all hues pay full attention because wheat or ‘roti’ is such an important part of our diet that it alternates for food. Also because if one is afflicted with Celiac, which sadly few know in Pakistan, it can be life threatening. I know it because I was diagnosed in 2011 in the US, our own system here unable to zero in on the problem I was facing. I have lived the life of a Celiac ever since.

I was always a thin, lean lad when young and for most of my life. My Haemoglobin (Hb), blood count, was always marginal and I was told that it was so for most Pakistanis. I do remember though that I fell ill quite frequently in my adolescence. Mostly it related to my stomach. I would vomit frequently and then suffer bouts of dysentery. And if you care to know it always began with ‘suji ka halwa’ of which I was extremely fond and which my late mother excelled at. ‘Suji’ of course is wheat; as is ‘maida’ and as are countless other evolutions beginning with yeast and corn flour and preservatives and dips and sauces unless those are prepared without wheat as a constituent. As is ‘nihari’, and ‘haleem’; add to this most desserts using ‘maida’ and almost all baked items.

And it isn’t only wheat which causes Celiac; two other staples are barley and rye. Rye is infrequent except in pickles but barley and wheat is the basis of anything and everything that some of you may indulge in, in your post-evening pleasures. Which only leaves the truly trusted grape as a saviour, if you know what I mean. The Russians are kind and ‘sometime’ resort to potato as a lucky fallback which is safe for Celiacs. So the next time you indulge and end up with queasy stomachs as a routine, go get a Celiac test done in any of the good labs where the test has now become available in the last few years. It wasn't in 2011. It is tested with a blood sample, and is acceptably priced if you view the consequences of not being aware while afflicted.

So what happens when you are a Celiac? Wheat, barley and rye produce gluten which give their dough the elasticity meant to mould them into bread, as indeed make it easier to travel down the gullet. The gluten is broken up by enzymes in the body for fibre, minerals, carbohydrates etc to separate from the composite food and enter the blood stream to nourish various parts of the body and its organs. These would include calcium, iron, potassium, sodium and the likes. This function is undertaken through the small intestine. A normal, non-Celiac, body is meant to so function. Not the Celiac-affected though.

A Celiac is genetically predisposed to an absence of the enzymes meant to break gluten up. Without being broken into its constituents, gluten remains the elastic mix in the stomach and the intestines. Over time it envelops the small intestine so wholly that not a shred of essential minerals and other life-sustaining ingredients for the body can enter the blood stream. Gradually the body and its organs weaken to the point of dysfunctionality and, unbeknown to those afflicted, the body melts away losing life. Luckily, now we know and have alternatives to sustain life.

So, if you suffer from irregular bowel movements, a bloated or a queasy stomach, and feel weak by the day to a point when getting up from the bed becomes a chore, especially after consuming wheat or its products, you are a possible candidate for Celiac disease. If this is accompanied with a lowering Hb level and dropping ferritin in the body (nature’s iron reserve to oxygenate blood when external sources dry up) it is time to go visit your gastroenterologist and a haemotologist. They should run a Celiac profile on you to know your exact counts and advise accordingly.

There is no cure for this disease. When you are afflicted, you are afflicted for life. You can only keep away from wheat, barley and rye. And keeping away means keeping away. Never consuming even the flying whiffs of it say in a kitchen where wheat is being used. A Celiac’s food is prepared differently and separately so that it remains unpolluted. In the US where Gluten-Free is now a separate cuisine, prepared meals exhibit clearly when they are free of gluten. If a food item is Gluten-Free but prepared in a plant where gluten-meals are prepared in an adjacent facility it will say so.

Pakistan lacks such facilitation or regulation and standards. Some in Hyderabad and Gilgit – where the Tapioca plant (a wheat type without gluten) grows – claim to mill gluten-free flour but having consumed both I have had to be rushed to the hospital for immediate reaction and shortness of breath. Imported Gluten-Free products from Germany, the US and the UK are available in specialized stores but are steeply priced. Since the duty structures were revised for imported foods the local supplier finds it unsustainable to provision the commodity any longer; especially prepared bread which isn’t food alone but medicine for the afflicted. The shelves have thus remained empty and unsupplied for Celiacs.

So how did I survive my years in the air force flying those extreme machines when genetically predisposed? Well sometime it takes longer to manifest – I was found out at the age of 58 – but the signs were always there as I have detailed. Extensive training and youthful energy helped me overcome any signs of inherent debilitation. Now that I know and stay off gluten strictly, at the annoyance of many a host, I feel healthier, initially putting on some weight which I have shed since. I exercise and golf to my heart’s content and feel far better than the sullenness and the feebleness that had crept inside me.

Gluten-Free is also a fad diet for Hollywood stars and more. It is considered healthy living. But to those afflicted with the Celiac disease it remains a matter of life and death. A related doctor recently suggested that a Celiac, strictly off wheat for some years, wouldn't survive longer than ten minutes if he were to ingest wheat. A local gastroenterologist felt that Pakistanis find it difficult to shed eating wheat and stick to the discipline of a Gluten-Free diet. He also thought that most on Flagyl being treated for repeated stomach disorders here were potentially Celiac afflicted. Just that they may not have the means to afford alternate foods. Keeping off wheat/roti is almost impossible for the Pakistanis. How many may have been lost to this creeping killer? No one knows.

Email: shhzdchdhry@yahoo.com