I was recently asked for advice for someone recently diagnosed with celiac disease. It has now been about a decade since I found out that was the cause of a set of symptoms that were, frankly, quite gross. I had had a strange rash on my bum since my late teens; painful, itchy blisters that left scar after scar. Once that had been around for a while my belly started bloating up with gas that produced some interesting gurgling sounds as well as progressively fouler smells. Then came the diarrhea.
People often ask what happens if I eat gluten right in the middle of dinner in a restaurant. My answer is that I'll tell them if they really want to know, but it's in their best interest to wait till they're done eating. The diarrhea that I dealt with in my early 20's progressed from loose stools to straight liquid. It showed up after every meal. Then it got worse and I started passing food that clearly hadn't been digested. I don't mean the bits of corn or carrot you sometimes find mixed in there, I mean when I started a meal I would feel a rumble within a few bites and before I was halfway done I was running for the toilet where the food I had just chewed up in my mouth would come out the other end. At the height of my suffering this would be repeated several times throughout the meal.
It was also pretty painful. The cramps were violent spasms that made me want to double over.
Given the grossness of it all I didn't really tell anyone what was going on. I just excused myself whenever the pain or need for a toilet was too much.
I had a suspicion for a while that there was something wrong with my diet but because I was sick all the time I wasn't sure what the culprit was. The mystery was solved one day when I was visiting my parents and came across a brochure for celiac disease. My mom had it kicking around because she'd been eating gluten free for years. Even with a family history I didn't clue in the whole time I was sick. What really caught my eye in the brochure was the description of a rash that sounded a lot like mine, something I didn't realize was connected to the digestive issues.
When my mother made dinner I casually asked if I could have some of her gluten free pasta instead of the regular stuff everyone else was getting. She looked curious. "I just want to see if I feel better without wheat for a while," I said.
Doctor's appointments followed.
Since then I've had a lot of conversations with people who've been though similar things and exchanged a lot of tips. Some things keep coming up over and over again. Since I've recently summarized my most common pieces of advice I thought I'd post it here as well.
1. Go cold turkey. Once the gluten is out of your system you stop craving it as much but cheating keeps you wanting it. Some people report addiction-like feelings towards gluten even though it's not an addictive substance. I learned this lesson the hard way. For some people quitting gluten can be like quitting smoking. Let yourself go through "withdrawal" and be done with it.
2. Don't think that you have to buy all the products labeled "gluten free" in the store. I use them sometimes as a treat or when I know I'm going to be busy but for the most part companies have figured out they can jack up the price and make a lot of money off of celiacs. They charge more than they should and the food isn't very nourishing (or tasty). I refuse to think these products are some sort of requirement for my illness. Without them I can keep my food budget under $30.00 per week. If I was relying on them that would be impossible.
3. Breakfast: A lot of people are used to cereal. I don't like cold cereal so this wasn't a problem for me. Some GF cereals have improved in recent years but I still prefer bacon, eggs and fruit. It's more nutrisous, tastier and cheaper. Yogurt and fruit is another good option. However, another more economic option if someone really wants cereal is buying a brand of oats that is gluten free such as "Only Oats". Where I live they sell it at Bulk Barn for about $6.50/kg. It can either be made into oatmeal or you can make your own cold cereal by mixing it with honey or brown sugar and baking it in a low temperature oven till it browns. Then you can add stuff to it like raisins, nuts, chocolate chips, marshmallows or whatever it is people like in cereal.
4. Lunch: One of the most common dilemmas people face when they are first diagnosed is what to do about lunch. The concept of lunch being a sandwich is so pervasive in North American society that it's hard for a lot of people to think of anything else. Options really depend on if you're at home or at work when you need to eat. When I have to pack for work, something like a salad with grilled chicken works really well. Bean salads and tuna salads too. Hard boiled eggs. Veggies and humus. Leftover chili, if there's somewhere to heat it up. Keep in mind that anything that can go in a sandwich can also just go in a Tupperware container and be eaten with a fork. At home, making soup from scratch is really easy. Just google recipes and make sure they don't use flour.
5. Dinner: Think of eating the way our great-grandparents ate. Meat, potatoes and veggies. There are also a lot of things that can go on rice like stir fry or curry. Sometimes I'll make a thick tomato sauce with lots of meat, mushrooms and veggies and serve it over rice instead of pasta. If you go for meals that are mostly meat, potato/rice and veggies you can cook it for everybody in the household and not have to make something separate.
6. Eating out: Tell people you can't have gluten. Servers in restaurants are getting better at advising people on what is safe if they know it's an issue, but they can't help if they don't know. A lot of fast food and chain restaurants will also have a special allergy menu that tells you what's safe. For eating at friend's houses, just give them lots of notice until they get used to it. Offering to bring something like desert helps to make it less awkward. (Then show up with ice cream and chocolate and they'll love it.)
7. Probably the most important thing to remember is that it gets easier with time. Also, once the gluten is out of the system you start to feel better and that makes life a lot easier. I was in so much pain when I found out why I was sick but for some reason I would still go on the occasional gluten "bender" for a long time afterwards. It never worked out well. It's hard to picture going through life without glutenous foods at first but it won't feel like that forever.