I spent years feeling off – starting in my late 20s, I’d be fine for a while, then have weeks to months where I felt bloated, achy and exhausted. The most common feature was sore joints – particularly my knees and hips. I’d been to a few doctors, but none of them ever connected it to diet – I was given anti-depressants, sleeping pills and told to exercise more. (That last one was good advice, though not for this problem!)
My mom actually figured out that she was sensitive to gluten first, and suggested I try taking a break from it to see. Around this time, I’d also found a good doctor who took more of a holistic approach. After a bunch of blood tests ruled anything more serious out, she agreed and gave me some guidance on how to do an elimination diet. This was in the summer of 2012. After a couple more months of feeling bleh, I finally got serious, got a food journal, and started the elimination diet. After a couple weeks of eating nothing offensive (soy/corn/dairy/gluten and a few other things), one by one you eat a whole bunch of the test food for a couple days, then stop and go back to the nothing offensive plan – and you see what happens. Corn and dairy – nothing. Soy – minor problems (I watch that and avoid large amounts of soy, like tofu-based meals). Gluten – ughhhh. Totally sick almost immediately. So then it was clear that gluten was the problem, and it was time to say goodbye.
It wasn’t easy to stick with at first – I’d go a few months mostly avoiding gluten (I still ate soy sauce and occasional breaded items) but then slip up. Pizza, pita bread and this delicious sandwich place in Albuquerque were all things I’d crave – and then I’d cave. I’d spend the next few days sick, vow to do better, and go back to mostly avoiding again.
When I moved to Scotland in September 2014, the big slips had stopped. I started to find that even the minor glutenings – the soy sauce, the barley malt in a chocolate bar – even that was making me feel poorly. I cleaned up my act even further and now strictly avoid gluten in food. I will still take my chances with shared fryers, but I know that’s going to need to stop soon too.
Unfortunately, I was never able to get a celiac diagnosis – I “failed” the blood test in the United States (it was done soon after my elimination diet, so it’s possible there just wasn’t enough in my system to produce the reaction they look for.) I was tested again in the United Kingdom, but by then I’d been off gluten for close to two years, so I knew the test would come back negative again. I say unfortunately because in the UK, people with a celiac/coeliac diagnosis are able to get gluten free bread, pasta, and pizza bases on prescription. In Scotland, prescriptions are free, so this basically means you get a bunch of the most expensive staple groceries for free every month. You are also entitled to a visit with a nutritionist, which I think would have been very beneficial as celiac can cause malabsorption issues that lead to vitamin deficiencies. Alas, no official diagnosis for me, so I just describe my issue as gluten intolerance.
I do feel tons better since giving up gluten. My joints rarely ache, I sleep better, and I don’t have the intestinal distress I was suffering through on a regular basis. I still have to watch what I eat, gluten notwithstanding, and I take a number of supplements to assure I stay healthy and comfortable. The inconvenience of being picky in restaurants and markets is worth how much better I feel. (I still miss that sandwich place, though!) In late 2017 I realized I had developed a sensitivity to dairy, and finally gave that up in 2018.
I started Gluten Free Fab Life as a way to share what I’ve learned over the years and to hopefully help newly diagnosed celiacs and those of you even wondering if gluten might be why you’re feeling bad. From what to ask in a restaurant to where to eat on the road, I hope you’ll find the site useful!