Catherine

Growing up I had a vague notion that some members of my extended family had problems with gluten, but it never occurred to me that I would get it too.
I don’t recall having symptoms until about age 18, in the springtime (2008). I still wonder what triggered the onset; I know I have the genetics, but my issues started at a time of great stress, poor diet, and poor self-medication. That summer I was (ironically) obsessed with eating whole grain wheat. I felt panicky and had to go and exercise after each meal. At the time I assumed it was because of an eating disorder, that I was anxious about losing weight. With all this put together, and probably coupled by an inability to absorb fat and other nutrients, I became far too thin. In addition to the anxiety I would cry very easily when put under stress, something that would have never happened only a year before. It definitely took a blow to my self-esteem. I hadn’t noticed over the summer due to the availability of bathrooms, but when I went back to school I quickly realized I had a major urinary frequency problem. If I didn’t go to the restroom at least once an hour it could legitimately lead to a mishap. This also caused me to wake up at least once in the middle of the night to use the toilet.

The anxiety continued and only amplified with school pressure. I would burst into tears over small and simple assignments (much to the bewilderment of the “sane” me who wondered what happened), and so had to start everything several days in advance and exercise regularly in order to calm my racing heart and mind. In a roundabout way my symptoms made me a good student and “healthy” person! I was also experiencing vulvar pain, which finally led me to see doctors. That was one of the most frustrating experiences of the whole ordeal. They would tell me they couldn’t see anything wrong thus I was making it up. One doctor had the nerve to bend down close to me as if speaking to a small child and tell me to stop scratching myself in my sleep. That was bad enough without my anxiety on top of it. I finally saw a gynecologist who diagnosed my vulvar pain correctly (vulvar vestibulitis) but gave me absolutely no details about it. I went home and did my own research, and learned it could be connected to food sensitivities. I went to a nutritionist, who instructed me to keep a food/symptom diary, writing down each food I ate and each symptom I felt, and when. I really must go back and thank these two doctors someday.

I quickly noticed that whenever I ate wheat I just felt horrid. The time I figured it out was when I ate a few crackers, then spent the entire afternoon attempting to look something up on the internet. The brain fog was so bad, each time I would open up a Google search page I would completely forget what I had wanted to do. I stayed in that position for hours unable to accomplish anything.
I had already tried eating low-oxalate, which helped my pain and urinary symptoms so much, but I hadn’t felt completely better. Within three days of giving up gluten I stopped wanting to kill myself. People don’t believe me when I say this, but it really turned my life around! My anxiety, depression, brain fog, and short term memory problems which had made my life so hellish all vanished literally in just a few days. My “eating disorder” went away too; once I experienced how wonderful it was to give my body the food that’s right for it and makes me feel good, I gave up my worries about body image. And of course I enjoyed the fact that frozen yogurt was technically better for me than whole-grain breads, though I know I should limit myself 😉

Now if I get “glutenated,” I get some selection of my symptom cocktail: brain fog, anxiety, racing heart, vulvar pain, urinary frequency, a bloated and tender stomach, and what seems to be fat maldigestion. The symptoms usually start about ten minutes after eating gluten and last in their most severe form for perhaps 30-40 minutes. After that I may feel more tired/distracted/not digesting well for anything between a few hours to a couple of days. The severity of reactions ranges from mild discomfort to feeling like my cells are self-destructing from the inside out. I usually go for a half-hour walk by myself to mediate.

Strangely enough, some people didn’t take me seriously until I got the gluten antibodies test and scored positive with numbers through the roof. That was a little frustrating – after all, the test is not 100% accurate; to me my great improvement in health is the biggest test of all. I never had the intestinal biopsy done because my doctor told me it wouldn’t make a difference; if I get the test or not, I need to avoid gluten. Although my experience with doctors was not always pleasant, I feel incredibly fortunate that I was able to figure out that gluten was the culprit in such a short time. My heart goes out to the people who struggled for years before getting a clue about their condition.

Now I worry about the rest of my family. My great-aunt had it as well as my aunt; my great-aunt was a pioneer of gluten-free home baking, encouraged by living in progressive San Francisco. However, my grandmother on the same side of the family died of intestinal cancer which spread to her throat – the two most common types of cancer for celiacs. She died when her first grandchildren were just babies. She never tried going gluten free; I will never know for certain whether gluten was the cause, but it makes me worry about all my family members who don’t want to get tested or change their diet.

Ironically, this branch of the family used to be wheat millers in Europe, and my extended relatives are responsible for planting the Midwest of the USA with wheat!! I guess they had too much of it!

My aunt and a close friend of mine with gluten issues were able to get back in balance via natural medicine. I know there is no known cure for Celiac, but I hope that by living healthily I can at least stop my symptoms from progressing; in the past two years I have gotten sensitive to the point where invisible crumbs of gluten will set me off, whereas initially I could eat from the same plate as someone with regular bread and be OK. In just the past year when I get tired (like after a long plane ride) or too many gluten reactions in a short time, my hands get raw and sensitive, and I suddenly am unable to eat cheese or milk without experiencing joint pain. Sometimes I feel like I’m obsessive with washing things in the kitchen, but I know it’s what I have to do.

I wash everything twice with either the dishwasher or by hand so that my roommates won’t feel guilty if they didn’t wash something well enough and I get sick. I rarely eat out unless it’s a situation where I don’t have anything urgent to do/study and it wouldn’t be such a setback if I got a reaction. Sometimes I get frustrated about how my gluten issues limit my social life and sometimes prevent me from doing as well in school; but on the bright side, I know how to cook more than I otherwise would have, I avoid many toxins because I have to read labels and know exactly what bad things are in processed foods, and I’m lucky enough to have figured out the source of my symptoms so that I do not suffer from them. Overall, I’d say I’m a pretty healthy person!

Throughout all this my husband has been right by my side. He was there with me scratching our heads about my strange and out of proportion anxiety attacks, noticed immediately when I got better, and does extra investigation to find places where we can still enjoy romantic dinners out together. Actually now he’s more careful about watching for gluten contamination in my food than I am! He sometimes senses I got glutenated before my digestive system even gives me the tell-tale signs, and helps me work through it. And of course, he gets to enjoy the food I cook at home!

I want to send a thank you to this group and everyone who is contributing to it. You’re really making life in the UAE a better place for us all. I also want to thank my friends and family who have supported my efforts to live healthily in my own biochemistry. And of course, I want to apologize to every waiter I’ve interrogated about their menu!

-by Catherine