Discovering I Have Celiac Disease
I’ve never had allergies particularly. I’m over-sensitive to caffeine, but from bees to peanuts, food has always been safe for me, which is why it’s still something of a shock to realize that not only am I allergic to wheat, but that I have celiac disease – a serious and potentially debilitating autoimmune disorder. The craziest thing? I’ve probably had celiac disease my whole life, but didn’t know until recently.
Earlier this year, I grabbed a sandwich at Au Bon Pain for lunch, and a few hours later, started feeling feverish and dizzy. Pretty soon I couldn’t stay out of the bathroom. I was sure I had a simple case of food poisoning, which unfortunately, was something I had experienced once before. I wasn’t vomiting this time though, so I thought I should count my blessings.
The next day, I couldn’t even get out of bed. I managed some apple juice, but that was it.
On the third day, I could function a bit and get to work with the help of some Pepto, but I still felt terrible. On the advice of a friend’s mother I stayed on the BRAT diet – that’s bananas, rice, apples and toast. As far as I was concerned, it was really the RAT diet, as I hate bananas. This made things manageable, but I was still sick.
What was wrong with me? By this point there were signs of blood when I went to the bathroom, and I was starting to freak out. Everything I could find on the Internet and a vague possible contamination vector seemed to suggest I had amoebic dysentery, and so I got an emergency appointment at the doctor and went in for that.
By this time, I had lost about ten pounds. I looked sick, and it was scary. We talked about my symptoms and I was given a stool sample kit and returned home.
I still felt awful and was frustrated beyond belief when the tests all came back negative. What was wrong with me? The doctor didn’t know and wanted to send me to a specialist. By trial and error I was discovering that as long as I ate no fat at all, I could manage, but it was clear this was an unnatural, unhealthy diet.
Suggested possibilities for my illness included gall bladder problems (which does include difficulties with fat, but also usually includes pain), liver problems, pancreatic problems and IBS – in short, anything might be wrong with me, and who knew how serious! I was in a panic, and turned again to the Internet.
Celiac disease was one of the possibilities that had been mentioned to me by friends but not doctors, and I hadn’t taken the possibility that gluten could be making me sick seriously. It seemed like too much trouble to cut all wheat and gluten out of my diet, especially when there was so little I could eat anyway. No one in my family has celiac disease, how could I have it? I wasn’t even sure it was real. However, reading the symptoms, it did sound like there was some possibility celiac disease could be what I was suffering from. Adult-onset celiac cases did seem to exist and the literature indicated it often manifested after a case of food poisoning. Desperate for a solution and hoping not to have to spend another small fortune on doctors without answers, I cut wheat and gluten out of my diet. In 24-hours I felt better and in 48 I felt nearly normal – for the first time in months! It looked like I had celiac disease and shockingly, that was good news I was able to share with my healthcare provider.
It soon became clear that I was probably a celiac disease sufferer my entire life. Major symptoms of celiac disease include an inability to gain weight (I’d always been very thin and as a child underweight), skin problems (which cleared up for me when I cut wheat out of my diet), and crankiness (perhaps my favorite symptom description, but seriously, I’d always been one highly irritable individual – something that has markedly decreased since eliminating gluten from my diet). It was shocking to know that some of my favorite foods weren’t just making me sick, but causing an auto-immune response in my body that was permanently harming my ability to absorb nutrients. I had all the symptoms except consistent intestinal distress, because it had taken that long for the damage to become acute enough that eating was problematic.
While there is no treatment for celiac disease, managing it is relatively easy – jus don’t eat wheat or gluten! The problem, of course, is that these things hide in most packaged foods, are often used in soups and sauces and can contaminate other foods in a kitchen. Having celiac disease for me means constant vigilance, since if bread even touches my food I am sick for days. It’s been a hard lesson going from invincible eater to the person who has to fuss and worry at the waiter every time I eat out. Additionally, my grocery bills are much higher now as special celiac-friendly gluten-free products can be really expensive. Luckily, there are suitable replacements for many, but not all, gluten-heavy foods.
Having celiac disease also means educating those around me – friends have to be careful not to put their gluten-contaminated utensils in my meal if they try my food at a restaurant. My mother has to double bag flour in her kitchen so I don’t get sick when I visit. And friends having parties know that if they serve crackers it becomes unsafe for me to try any of the dips on hand.
While having celiac disease is often frustrating, and I do still get sick from accidental gluten periodically, I feel healthier than I’ve ever been. As maddening as it is, having celiac disease is far less scary then when I had it and didn’t know what was wrong with me. Unfortunately, I was lucky – many with celiac disease experience dozens of doctors visits and sometimes require years to get a diagnosis and solution to their problems. If you’re miserably ill and can’t figure out what’s wrong. Try cutting out wheat and gluten for a day or two – you never know – you could have celiac disease too.
