Celiac disease and the trials of an allergy family
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“Mama, can I eat this ... how about this?” my daughter asks for the 10th time as we cruise through the aisles.
“Check the ingredients,” I reply.
We do this every time we shop, because we are an 'allergy family' that avoids milk, eggs, rice, corn, citrus, peanuts and wheat. At the tender age of seven my daughter has an extensive vocabulary of words such as hives, asthma, chest infection, gluten, epi-pen and knows which anti-histamine to take, when.
Proud moment albeit a sad one.
Wheat is specifically linked to an auto-immune condition known as celiac disease, where the body feels as if it has been attacked when it ingests the protein gluten (found in wheat, barley and rye).
The punch line is, celiac has no cure as of yet and the only way to stay healthy is to follow a gluten-free diet, for life.
Celiac is detected through blood tests for antibodies (tTg-IGA) followed by a colonoscopy and biopsy of the intestine for confirmation. The obvious things we have to avoid are breads, rotis, parathas, cakes, cookies, pastas, pizzas, cereals, not to mention the less obvious potato chips, packet soups, gravies, chicken stock, ice cream, ketchup, soy sauce and even green tea!
Many are also unable to eats oats or drink coffee, so yes, it gets worse.
This kind of investigative scanning requires obsessive diligence when buying and ordering food, which makes us a hoot to be around!
Those of us living with this condition can tell you that it is a harrowing experience. To deal with the symptoms, misdiagnoses, distrusting or ill-informed doctors who think we are certifiably mad and the constant feeling of un-wellness for which we get called “weak” and “lazy”.
Sehar Asif is a gastro-enterologist and it took her a year to correctly diagnose her own son, “Celiac can look like a common tummy or bowel problem, so it was a big leap for me to consider it”.
The most common symptoms of celiac disease include, bloating, vomiting, stomach pain, long bouts of diarrhoea (or constipation), and failure to gain (or lose) weight, as well as brain fog (difficulty remembering things, feeling confused and disoriented).
Some of the uncommon ones include, hair loss, joint pains, migraines, numbness of arms and legs, skin rash (dermatitis herpetiformis) not to mention psychological clues such as irritability, depression, mood swings and night tremors in children, which my daughter was plagued with for years.
It is no wonder then that patients find it hard to convince doctors to take them seriously, but continuing to eat gluten-containing foods, even the smallest amounts, whilst you have celiac disease, causes long-term and permanent damage and can lead to osteoporosis, arthritis, diabetes and infertility.
Also read: Gluten-free has gone big time, but why so popular?
The symptoms can appear in infancy or go unnoticed for years and appear suddenly in adulthood. As they did for Gul Rukh Mehboob.
“I was given endless iron supplements as a teenager for my anaemia, but then began to have recurring stomach pain and diarrhoea. I tried years of herbal and homoeopathic therapies, but nothing changed. I was once told I had intestinal tuberculosis and was even prescribed anti-depressants”.
She was finally diagnosed in her 20s by a doctor who saw her symptoms as a cluster.
Asfandyar, like many others, has a similar story of enduring years of anxiety and poor health, “I had constant problems with acidity as a teenager and it was probably the onset of celiac but no one noticed. Years later, when I went to attend college abroad, I was tested and found an answer ... and relief”.
Hina Ellahi is empowering her 5-year-old daughter with celiac, to read labels and be her own advocate at school and in public, “It started when she was 2, she was either constipated or had a runny tummy. And it was demoralising when people said she was a fussy eater, I knew there was more to it. It took one attentive child specialist to finally listen”.
Faced with questions like “are you sure, I’ve never heard of this before” and “but what will you/your child eat, you can’t be healthy without wheat?” or the better ones such as “keep eating it, I’m sure your body will eventually get used to it”, celiacs have to develop a thick skin and a sense of humour.
Along with food allergies/intolerances, non-celiac gluten sensitivity (NCGS), diabetes, IBS, lupus, and even psoriasis can improve by eating the right kind of food.
In the United States and across Europe food companies are required to mention the full list of ingredients highlighting allergens. But, thus far in Pakistan, incomplete and misleading labelling leaves us with no choice but to avoid doubtful products or take harmful risks.
There are a few individuals who provide safe foods for celiacs through the Damascus restaurant in Karachi and Nimo’s Kitchen in Lahore, whilst others exploit the market by putting out wheat-containing products mislabelled as safe for celiacs and diabetics, causing serious harm to people's heath.
We as a nation, desperately need to be aware of the connection between food and health, so would it be ludicrous to expect our cooking shows to discuss allergy/gluten-free ideas or for local and foreign eateries and franchises to incorporate some gluten-free, egg-free, dairy-free options that are readily available around the world?
Maybe if we ask enough times, we could inspire new eating trends which could lead to healthier lifestyles for those looking for a change, but most importantly, more options on the menu for those who have to make it a life-time commitment.
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Resources:
Zainab Mahmood-Ahmad is a counsellor and creative writing tutor who manages a Facebook group for parents of children with allergies.
