Celiac - Living With It. Gluten - Living Without It.

The Diagnosis

You probably received your diagnosis a lot quicker then I did, but then you probably have an answering machine.

The Doctor had taken advantage of my colonoscopy to take a biopsy of my insides, in the hope that it would explain my weightloss. When I hadn’t heard anything from the Doctor after ten weeks, I reckoned I could breathe easily. The mistake I made was saying so out loud. The Doctor’s receptionist phoned me up on the same day. Before booking me in for an appointment with the doctor, she scolded me.

“I’ve been trying to get in touch with you for a month. Don’t you have an answering machine?”

“No!” I answered. “We’ve been out in the garden, taking advantage of the unseasonable weather, apart from which nobody ever phones us.”

“I phoned you.” She replied sweetly, “And how do you know that nobody every phones you, mmm?” There wasn’t an answer to that, so I just winced, took a note of the appointment time and began biting my fingernails again.

At the appointed time, my wife Ell and I were sitting in the Doc’s consulting room; I was trying hard to appear nonchalant. Apparently it wasn’t working, as the first thing the Doctor said when he walked in was, “relax, you don’t have cancer.” It wasn’t until I felt my neck and shoulder muscles relaxing that I realized how tense I’d been. I could taste my relief.

“What you do have,” the Doctor continued, “Is Celiac Disease.”

“Celiac?” Ell queried.

He straightened the papers on his desk, and carried on, “Celiac Disease is an auto-immune disease, and it means you are sensitive to ‘Gluten.” He waited a few moments until the information sank in.

“And just what is Gluten,” I asked.

“Gluten – Latin for ‘glue,’ if you are interested, is a binding agent found in wheat, barley and rye. It helps bread to rise and keep its shape and prevents it from crumbling or going stale.” the Doctor went on. “So far, the only way to diagnose Celiac is by a biopsy. The symptoms are so diverse that it is almost impossible to diagnose any other way, and it can take up to 10 years for it to be diagnosed. Let me explain!”

The doctor started waving his fingers about like tentacles. “Your small intestines have millions of little waving fingers inside – like seaweed fronds. The fronds, - they are called villi – collect the protein and vitamins that your body needs to survive and grow. Gluten damages the fronds.” The Doctor folded his fingers in until only his knuckles were showing, “until the villi are reduced to stumps and your body is reduced to starvation rations.”

“Celiac Disease is inherited, and you can get it at any age.”

The Doctor continued, “Apart from your loss of weight, lack of iron, lack of B12, and your skin condition - dermatitis herpetiformis, you are anaemic.” The Doctor leaned forward over his desk, “Almost 1 in 200 people have it in Canada, and as I said, it can take years for it to be diagnosed. You are lucky; I have a Doctor friend who had it for 7 years before he was diagnosed, while you have only been losing weight for 5 years.”

I thought the 'only' was ever so slightly ironic, but I ignored it and slumped back in my chair, confused by all the information. What did I have and what did it mean…and more importantly…. “So what do I do to cure it?” I asked the Doc.

“You can’t, there isn’t a cure.”

“You mean… you mean…” The roof of my mouth dried instantly.

The Doctor shook his head. “It isn’t an ultimatum. The only so called ‘cure’ is to stop eating any food with gluten in it.” He shrugged, “The average life span in Canada is between 78 and 80 years of age, and at your age, you might decide to keep going the way you’re going.” He held up both hands to ward me off. “No! I am not saying you will die when you are 78, from what I’ve seen, you have at least another 15 years ahead of you, OK?”

I licked my lips and swallowed, “OK!” I nodded, “but please explain Gluten to me.”

“Gluten is a general name for the storage proteins (prolamins) found in wheat, barley, rye and related cereal grains. If you have GD even a small amount of gluten is harmful. A strict gluten free diet is the only treatment and requires the lifelong elimination of all foods containing wheat, barley, rye or related cereal grains and commercial oats.”

“But what does that mean?”

The Doctor picked up a pen and began writing. “I’m going to put you in touch with a Celiac Dietitian, who will tell you what you can and cannot eat….”

I interrupted the Doctor to tell him that I had recently taken an Impedance test and I’d already had advice from a dietitian.

The Doc nodded and sat back. “That was a positive step to take, and if you keep that attitude, you’ll get through this minor problem in no time, but the dietitian you consulted earlier did not know you had Celiac Disease; you didn’t know you had Celiac. He no doubt gave you excellent advice, but what I must stress is that you can eat like a gluttonous pig, but if there is any gluten in the food, you will not put on any weight.”

The Doctor sat forward again and continued writing. “This Celiac dietitian will give you up-to-date advice on what you can eat, but in the meantime, no bread, beer, candy or chips. Anything made with corn or rice should be safe, but your dietitian will tell you more.”

Ell stammered a shortened version of the Doctor’s list in a strangled voice. “No beer chips or candy? Those are Mac’s three main food groups! God help me!”

“Can I still drink coffee?”

“As far as I know you can, but the dietitian will tell you more.”

As we walked out of the Doctor’s consulting room and across the waiting room, I was in a daze. The receptionist coughed loudly and waved to get our attention,

“Answering machine?” She reminded us. “Your Celiac Dietitian is a great believer in telephones and answering machines.”

I stared at her blankly. In a matter of minutes I’d gone through the whole gamut of emotions; from delirious relief to stunned dismay. No more beer, chips, or chocolate bars? What the hell did I need with an answering machine? A single bullet would solve all of my problems.

Whatever you do, don’t get your words confused. Celiac does not mean that you will be ready for sex at any time – You're thinking of Cialis.

When the Doctor told you that you suffered from a disease with some freakish name, it wouldn’t register at first. All that you would feel was a great weight being lifted off your shoulders – finally there was a name for your 5 to 10 years of symptoms, and it wasn’t cancer.

If you have just been diagnosed with celiac, and are as confused as hell, I hope these jottings, written by a celiac-disease sufferer will give you some information and may even lift your spirits.

Celiac Disease Symptoms

Your symptoms could have been anything from mouth ulcers, dermatitis, fatigue, weight loss, nausea, migraines, depression, liver problems, menstrual problems, or irritability, to name a few. My symptoms were weight loss and skin rash. I didn’t connect the two, and neither did my Doctor; and as far as we were both concerned, my migraines were just migraines.

When I first told my GP that I was losing weight, he shook his head. “What are you complaining about? Have you any idea how many millions of seniors would give their eye teeth to be losing weight instead of gaining it?” I accepted this explanation for a few years.

But then I started losing too much weight. I’ve never been a heavy person; 135lbs being my average weight. When I was in my forties I could weight-lift much more than my own weight, which made me relatively fit. Even after retiring and immigrating to Canada, I was never lighter than 130lb, and I was still happy with the weights I could lift.

I lost so much weight that I had to stop playing tennis and my normal gym exercises became exhausting. More blood tests were in order; again there was nothing showing, so the Doc sent me to see an Endocrinologist

The endocrinologist found out that I was anaemic, and prescribed iron tablets and B12. She also booked me in for another colonoscopy, with the added bonus of a gastroscopy. All good clean up-and-down fun. The surgeon took advice from my endocrinologist, and took a little snip (a biopsy) from my inner intestine. After the procedure, he told me that he had found nothing out of the ordinary, but he still had to scrutinise the biopsy. If he found anything, he explained, he would get in touch and if he found nothing he wouldn’t get in touch.

It sounded like an odd way of letting me know if I was about to snuff it, but I was too woozy to question it.

The Dietitian

Common sense wriggled its way in through my self-pity, and we stopped off and bought an answering machine on the way home. And it was just as well, because two days later there was a message from the dietitian telling me I had an appointment the following week.

At my appointment, I half expected the dietitian to check my age and ask me why I was going to bother with a gluten free diet, but she didn’t; she was very supportive. Before she gave me a list of gluten-free foods as defined by the Dietitians of Canada, she ran through the differing stages of the disease.

“How to go about controlling your celiac depends on how acute your version of the disease is.” She looked down at her notes. “In your case it appears that it took over 5 years for you to lose so much weight, so it may not be too acute.” She waggled her hand in front of her, “Maybe!”

“However bad you have it, you will have to be aware of cross-contamination.” Seeing my baffled look, she smiled and continued, “Cross contamination means that if you and your wife,” she nodded towards Ell, “are having toast, you will have to make sure that none of the wheat from your wife’s toast contaminates your gluten-free toast. This can mean having separate toasters. Going completely gluten-free may mean having separate knives and cooking utensils. It can also mean separate cutting boards and your own containers for margarine, peanut butter and jam.”

My wife leaned over and clutched my arm. “Darling, that means you will no longer be able to help me in the kitchen,” she gasped.

“Nice one,” I replied as the both women struggled to suppress their sniggers.

The dietitian continued after a few seconds of feminine connection. “It appears now that oats, which have so far been restricted, may be safe as long as they are not ‘commercially’ made oats where the machines may have been contaminated by wheat, barley or rye. You will have to be very strict about cross contamination if you want your small intestine to heal,” the dietitian continued.

“Heal?” I pounced; this was a new word for me in relation to Celiac. “I was told there was no cure!”

The dietitian held her hands up in front of her and shook her head. “My mistake, wrong word. There is no cure as such, but with a gluten-free diet your small intestines will heal up to the point where your symptoms are eliminated. After some weeks, months or years in some cases, on a gluten free diet, people assume that they are cured and begin to eat food containing gluten and the symptoms return. Even when you are symptom free you will still have to stick to a gluten-free diet. Sorry!”

I repeated the surgeon’s remarks about beer, chips and candy. “Is it true that I have to refrain from eating them?”

The dietitian shook her head. “Not completely, there are gluten-free beers available, and now that there is more interest in Celiac Disease, you will find more gluten-free chips. Apart from that, as long as the chips are made from corn or rice, you will be quite safe.”

“The biggest change in your life style will be checking the ingredient labels on every purchase, and especially so when it comes to flavouring. It is pointless buying gluten-free food and then covering it with sauce or flavouring that contains gluten. You will have to be very careful; for instance there is a corn cracker on the market just now and you might think, ‘oh, goody, something I can eat,’ and buy a packet, but on reading the ingredients label, you will find that wheat is one of the ingredients.”

“And,” she held her hand up and pointed to nowhere in particular, “Because gluten can be extracted from wheat and milled, it can be used as a stabilising agent in other foods. You may find gluten in sauce or ice-cream. Not only that, gluten itself is used to make imitation meats.”

“What happens if I don’t go on this gluten-free diet?” I asked.

The dietitian began counting off on her fingers. “You might eventually develop osteoporosis; type one diabetes, thyroid problems, intestinal cancer, liver cancer……want me to go on?”

I cast my mind back to when my father died at the age of 76. He had become thinner and thinner, and everybody had assumed that his loss of weight was a symptom of old age. But he had died of sudden liver failure; a man who didn’t drink a drop of alcohol in his life. Was it possible that the ‘sudden’ liver failure could actually have been a symptom of undiagnosed Celiac Disease?

Ell butted in. “You’ll be going on the diet, OK? If you don’t, you’re liable to shrivel up and fall through a crack in the sidewalk.”

Apparently, Communion Wafers are not gluten-free. You can either refuse to eat the wafer – or thank God for handing you such a good excuse for not attending Communion.

However you decide to face up to Celiac, please don’t do what I did - don’t panic.

When I got home from the appointment with the dietitian, I was mindful of the time I stopped smoking; I’d been half stopped for over a year and but still managed to accidentally ‘find’ a packet. That wasn’t going to happen again. I poured my remaining beer down the toilet; fed my gloriously salty crisps to the birds and rooted around until I found half a Kit Kat, and fed it to the dog – if I was going to suffer, so was she.

The following week was a right scunner. Talk about being down in the dumps! Friends tried to talk me out of my slump by reminding me that Ricky was in a worse position than me - he’d just had his toes amputated due to his diabetes. Not only that, Larry had been diagnosed with prostate cancer. What did I have to complain about?

None of it made any difference. Not only did I have a disease – a disease - for God’s sake, but I was consumed by guilt. Celiac was an auto-immune disease and more importantly – it was inherited. I could have cursed my parents and grand-parents for landing me with it, but all I could think of was that I’d passed on a disease to my daughters and grand-daughters. I prayed that I would have shuffled off this mortal coil before any of them got Celiac Disease and started cursing their auld Papa.

I was still feeling sorry for myself when I emailed my Scot’s buddy Andy, and told him about the diagnosis. He emailed back to say that his daughter had suffered from Celiac disease for most of her life, and was anything interesting happening in Canada. This remark brought me up short; in the 30 years that we’d been friends, he had never mentioned this.

The next surprise was at the church that Sunday. My wife told the Minister of my diagnosis, and the word spread rapidly. It didn’t take long for me to find out that because of my weight loss, the congregation had assumed that I had cancer. They weren’t quite keeping book on how long it would be before I snuffed it, but I’m convinced I saw a few disappointed faces.

A bigger surprise came when a dozen churchgoers I’ve known for years, came up singly and told me that either they had Celiac Disease or one of their relatives had it. One woman told me about her eight year old grandson who had it. Can you imagine being 8 years old and never having the chance to eat plain, ordinary bread, hamburgers or hotdogs; never having the chance to eat cakes, flaky pastry, or doughnuts?

I came to my senses that Sunday. I sat there in my pew and cogitated how I was going to treat Celiac. I could make it a war, but then I would be constantly on edge and aggressive with it, and that is not my style. I finally decided that Celiac Disease was going to be a game; a game I was going to win.

If you look at Celiac Disease in a logical manner, it is simply a diet. All you have to do is NOT eat Gluten. The fact that Celiac is now being diagnosed more frequently could be because of the increased use of dried and milled gluten being added to more foods than ever, and not because of any magical diagnostic powers.

Stop eating gluten and the change in your life will seem miraculous.

When I was diagnosed, I was down to just above 100lb– a decent breeze would have wafted me off to foreign parts. Over the previous years I had been punching extra holes in my belts, and none of my clothes fitted me. When it came to sizes I reckon I was down to small-minus. Now, 2 years later, I can now ignore the last punched hole in my belt, and some of my trousers stay up without a belt - and I am up to 125lb.

Caution: After 6 months I began to get blasé about the whole thing, after all I was gaining weight, wasn't I? I began to eat the occasional flaky pastry and doughnut - big mistake. Before I knew it I was back down to 115lbs. You have to stick rigidly to the anti-gluten diet if you want to give Celiac the finger.

Hey! There’s an idea for a Celiac Disease advertising campaign

‘ eat selectively and gain weight. ’

I’ve reached these encouraging results since that Sunday. It was then that I decided to do some research and logged on to the Internet. I suggest you do the same. Not only will you find lots of heartening information, but you will find national and local celiac association websites where you can get personal and helpful advice. www.celiac.ca is the website for the Canadian Celiac Association, and it gives the website and email address of my local association, as well as addresses of local shops that sell gluten-free products.

Most of the items you can’t eat are snacks, and even that is changing. Retail stores are now jumping on the gluten- free bandwagon, and you can now buy gluten-free chips and candies. Not only do up-market stores have gluten-free departments, but ‘no-name’ grocery stores are beginning to show an interest. You will also find stores selling nothing else but gluten-free ingredients for cooking and baking. Gluten-Free is becoming the in-thing. So much so, that Kellogg has brought out new gluten-free Rice Krispies, and they still snap crackle and pop. (Not that rice should contain any gluten, you understand.)

If your Celiac is mild in nature, you can do what two of my Celiac suffering friends do; if they are on an outing, and have a craving for a beef sandwich, they buy the sandwich and discard the bread. They can do the same with most sandwiches, although egg salad sandwiches could be difficult - but it would be much safer if they simply asked for the roast beef without it coming into contact with any bread.

If your Celiac is serious in nature, where two toasters are needed and you have to stick rigidly to the cross contamination rules, don't even consider buying a sandwich and removing the beef. Instead, keep yourself safe by always carrying some gluten-free snacks - always be prepared.

After looking into the disease and taking everything into account, you will come to the positive and practical conclusion that although celiac may be a pain in the butt, nothing much has changed…….

You can still eat meat --beef, pork, chicken, turkey.

You can still eat fish-- trout, salmon, herring, etc.

You can still eat fruit--grapes, apples, oranges, bananas.

You can still eat nuts-- peanuts, hazelnuts, almonds.

You can still drink-- wine, whisky, rum, vodka.

You can still eat-- corn, popcorn.

You can still eat rice.

You can still drink beer….. gluten-free beer.

You can still eat bread… gluten-free bread. (True, you have to keep it in the freezer until you need it, and it is better toasted than simply thawed – but it is bread. I’ve found ‘corn or fibre bread’ to be the nearest thing to real bread; I take the number of slices I think I’ll need for the next day, and take them from the freezer and put them in the refrigerator overnight. Do make sure they are still sealed or you will end up with really stale bread.)

Lately I've found a newer, better bread which does not stay frozen solid whilst in the freezer. The slices stay separated, and the bread is at least $2,00 cheaper than my normal bread - it is delicious.

I've also found a yummy newer cereal - Honey Nut 'Chex'. The cereal is gluten-free and is made by General Mills.

Human nature being what it is you will take detours from the gluten-free track occasionally, but do remember that you are going to suffer for it. One of my young grand-daughters presented me with some Hershey Kisses for Christmas. I ate them – not wishing to seem unappreciative, you understand – and savoured every morsel. It took over a week for the skin rash on my arms and behind my knees to dissipate. This was an interesting result, as I’d had no idea previously that it was chocolate that caused my skin rash.

Disadvantages of a Gluten–Free Diet:- You may have to invest in two toasters like we had to, and perhaps get duplicate bread boards and knives.

Advantages of a Gluten-Free Diet

I’ve been told on the QT, by a few Celiacs that a gluten-free diet is good for their sex life. Apparently, if your love life has been in the doldrums recently, it may have been caused by your inner intestine blocking the proteins needed for ....you know? You may find that a gluten-free diet will bring it…er…things, back to life.

You now have a foolproof reason for not going out for a meal with people you dislike. But, you will make new friends in the gluten-free aisle at the supermarket. Meeting someone with the same disease is an instant way of making friends; you will have so much in common and so much information to share that you'll probably arange to meet for coffee and cookies -gluten free cookies of course.

You may find your partner happily buying into the gluten-free diet and making you both healthier.

You will be astonished after a few months, when you realise how long it has been since you bought any indigestion or Migraleve tablets.

You can get tax concessions if you have Celiac – (In Ontario). One of my new Celiac friends gets tax rebates of over $2,000 per year.

The greatest advantage of a gluten-free diet is discovering for the first time in years what it is like to be gloriously, wonderfully, exhilaratingly, vibrantly alive.

NB When you find out that gluten-free food is expensive, (A loaf of gluten-free bread can be up to $5.00 dearer than an ordinary loaf), you will realise that being vibrantly alive is almost a prerequisite for having the disease. You may need that extra vibrancy so that you can take on a second job to pay for the privilege of buying gluten-free food.

PS. As mentioned earlier, rice is gluten free, so you might think that anything with rice in it is safe to eat. Not true, - the rice may have a sauce which has wheat in it. And - be careful of your normal foods. Recently I was eating a new favourite frozen lunch. That night my insides decided to erupt and sleep was not an option. I couldn't understand this, and decided to replay the previous day's meals - in my favourite frozen lunch was a new sauce - made with wheat. So be careful, ingredients can change.

Exciting Living, fellow Celiacs.