Here’s a little (and sort of humorous) story about our journey with gluten and coeliac (celiac for you Americans) disease. Over the next few months I want to post different gluten-free issues, discoveries and helpful tips. My husband always had a sweet tooth. His knees would weaken at the sight of gooey, cinnamon buns at the mall, and he could never resist the slice or two of cake, plus my portion, at a party. Friends had even nicknamed him ‘the muffin man’.
Fit and broad-shouldered, my husband rarely visited a doctor before the age of thirty.
‘Babe, I just don’t understand. I’m eating well, and I’m working out. I mean, I’m under some pressure, but this is weird,’ he said as he crashed on the sofa.
‘Do you think it’s stress? Are you sure you’re getting enough sleep?’
‘I thought so, but I just can’t keep my eyes open.’ He grabbed two pillows and closed his eyes.’ ‘Can you wake me up when it’s time to eat?’
‘Sure.’ I looked at my husband whose legs dangled off the end of the couch. His face was pale, and I realised the naps were getting more frequent.
Ten months later we sat in a specialist’s office looking at the test results.
‘I noticed your teeth. See those ridges? I can spot coeliac teeth across the room,’ the specialist explained.
My husband forced a grin and looked at me. It was the first time I noticed any ‘ridges’, but the specialist was right.
‘It has many forms, and if you have it as a baby, by the time you’re a toddler you will look malnourished,’ he said. ‘But in adults, like in your case, if it’s in your DNA, it could be triggered after prolonged stress or illness.’
‘I guess I’ve had stress with all that’s going on with work,’ he said. ‘So is it like an allergy?’
‘No. If you don’t eliminate gluten, it can kill you in a number of ways because you’re not absorbing nutrients in foods.’
‘What about all the stomach issues. I mean it’s not all the time, but it certainly isn’t normal.’
‘Most coeliacs have one thing in common: chronic diarrhoea.’
With books in hand, and the grieving process on course, we set out to make the vast lifestyle changes needed to become a gluten-free household. That first week, I scoured the internet while my husband took little interest in the facts thrown his way.
‘Hey, they say if you are gluten-free, you usually get 100% better after two to three years of no contamination,’ I said. I knew my research was not convincing.
‘Great, how the heck is that going to happen? Look at what is in our cupboard.’ He pulled out the pasta, flour, and two tinned cans. ‘Gluten is in everything!’ He slammed the door shut, slid down to the floor and put his hands over his head.
I walked over, sat next to him, took his hand in mine. Words would not help him now, only time.
I knew we needed to talk to people who had first-hand experience as my little pep talks weren’t producing the desired effect. In my research the next evening, I stumbled across a city coeliac support group that was meeting only a week later.
‘What are we going to talk about? Stomach issues?’ asked my husband.
‘Uh, maybe, and other stuff too. Like how to deal with it, and how I don’t have to have constant baking fiascos,’ I said.
I had pictured a dark room with a few people huddled in a corner for the meeting. Mumbling, each one would introduce themselves: ‘Hi my name’s Charles, and I, ah, um, have diarrhoea.’
We were pleasantly surprised, however, as we walked into the morning session surrounded by 150 people.
‘This is the largest group in the UK. We have over 1,000 members, and we want to provide all the resources we can for you,’ said the host of the event.
My husband and I felt more at ease as we nibbled on tasty gluten-free pies and breads while waiting for the presentation to begin. He asked a dietician loads of questions about food items, while I stocked up on free samples and recipe cards.
‘Anyone here know how to make a decent cornbread? Where can I get gluten-free tortillas?’ I asked. I quickly realised making some of our favourite American foods would take some serious creativity.
We all gathered into the main room, and the host took the microphone.
‘Thank you all for coming. And thank you to Betty’s Bakery for providing all our gluten-free delectables. You know it’s gluten-free when no one is running out of the room quickly,’ he said. The host and audience laughed as he pointed to the bathrooms.
We didn’t laugh. It was odd sitting in a room where most people had invested in luxury toilet tissue and reliable odour elimination sprays.
The host continued to relay a story about another support group that, a month earlier, had eaten catered fish and chips. One of the members loved it so much that they went to find out the secret to the light and fluffy crust. The proud chef replied, ‘I coated it in gluten-free flour, then I soaked it in beer.’ The auditorium where we sat filled with groans and knowing looks – every coeliac knows that beer is filled with gluten.
‘I have friends who know five minutes after they have had a morsel that contains the “g-word”,’ the woman next to me mentioned in a whisper. ‘I’m not that bad, but I feel really sorry for some people, especially when they’ve had the symptoms for years and are just now starting the diet.’ I was grateful we had caught the symptoms early.
Armed with cakes, pastries and quiches, we left the meeting encouraged and ready to face the next few months of transition. Though my husband had various symptoms, he still looked healthy and fit.
Our coeliac specialist called one day to ask a favour. ‘I’m doing a medical presentation on the modern coeliac, and with your build, you’d be a great model. Would you mind coming in for a photo shoot at the hospital?’
Slightly excited about his new-found fame, a few days later a nurse escorted my husband to the hospital photographer’s studio.
‘Please remove all your clothes,’ said the photographer who acted as if this was a normal request.
My husband looked at the nurse with wide eyes and a curled bottom lip. They both turned a slight shade of pink. ‘Philo, he can stay fully clothed,’ the nurse explained with embarrassment to the photographer. ‘It’s just to show how healthy he looks.’
‘Oh.’ The photographer was perplexed with a hint of disappointment. ‘They always take their clothes off to show the bits that are poorly.’ My husband took the shots and left in a hurry.
These days my husband is rarely tempted by tantalising, glutinous breads. His energy levels have shown a marked improvement. I have fewer baking-experiment disasters, though I have not yet perfected the sorely missed flour tortilla.
We have also switched back to more economical toilet tissue.
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