I experience fatigue, headaches and dizziness, stomach pain, at times diarrhea, and bone and joint pains.
In my sophomore year of high school I was admitted to the hospital for acute stomach pain, uncontrollable vomiting and diarrhea. They ran several tests (including a small bowel x-ray or something similar) but found nothing conclusive except some swelling of the intestines associated, they said, with crohns. I went back several months later for a follow up and it was gone. However, during that time, because of systemic problems associated with food allergies, I had gone on selective elimination diets including a wheatfree one which may have led to some clearing up. I wasn’t diagnosed until a year later, after my aunt had been diagnosed with a very progressive and acute case. When our family learned more about the disease and my symptoms matched the descriptions, I had blood drawn for it. Because this was several years ago the tests were not as accurate as they could be. However I had selective IgA deficiency which is closely related and indicative IgG counts as well. I was put on the diet and felt better with in 2 weeks. A month later I had a biopsy, but because it was mismounted, the lab could not read it accurately for celiac disease. So, my case has mostly been diagnosed clinically with some lab results to back it up and a good bit of family history.
Yes—on my father’s side. I have an aunt and two uncles with celiac disease. And then I have three cousins with it. and I and my younger sister both have.Also, my older sister and another aunt both have thyroid disease.
Being in college with it has especial problems because of eating at a cafeteria or deli-like place. Just trace amounts can bother me, and so eating at a salad bar where people may have accidentally touched croutons with the salad tongs or some such can create a reaction. Also, just living and sharing a kitchen with people is difficult for the same reason—trace contamination in butter or on the counter can be problematic. Another problem is traveling and going out. Foreign travel can be very difficult because labels aren’t in English and some countries don’t know about celiac disease. However some do and can be extraordinarily helpful—some Italian restaurants in England had gluten free pasta etc.
I can’t drink beer, the college social drink =), and at times if there is too much of it in the air, the scent can bother me (this also happens if people are baking at times). When I was in Dublin a few summers ago with friends, we stayed in a hostel just down the street from the Guinness factory. Everyone else was having a fabulous time seeing the sites and walking the streets, but I felt terrible and couldn’t really understand why—I felt like I had awful allergies but it was past allergy season. It took me a while to realize that because of our hostel’s location, I was continually breathing in the hops from the Guinness factory and was having a reaction to those fumes! I didn’t know I was that sensitive to it or that I could have a reaction just to the gluten in the air. Since then I have been more cautious about being around gluten in preparation process as I think I may have become more sensitive.
I’ve heard lipstick and lotions and shampoos etc. Some people are a lot stricter and more careful then I am. I don’t worry about external use things that much, however if I see on a shampoo bottle that it contains oatmeal or wheat extract, I won’t buy it. I know that some people have skin reactions to these products, but thankfully I don’t, it’s just the internal. However, these items have hidden gluten in them too—some surprises are Sunny Delight, twizzlers, almost all name-brand cereals (they put malt in everything, even rice crispies), soy sauce, and grated cheese…. But those are the easy things to watch out for because you can read labels. Harder things are making sure new pans are used when your food is being prepared, watching out for trace contamination, and checking with people who make food to make sure they didn’t happen to put some flour in or some random item that contains gluten.
Just be thoughtful and be willing to ask questions. For those with celiac disease, make sure you let people know that it makes you sick, not that you are just on a diet—I don’t know how many times I’ve been at restaurants or talking with people about it and they ask if I really think I need to loose weight or if this diet works or something along that line (some people think I'm on the low-carb Atkins diet). If they know it’s a medical problem, chances are they will be more helpful and it’ll be less likely you will have contamination.
Friends of celiacs, just understand that this problem changes the way celiacs can interact socially—dinners and such are more difficult. So be sure to ask about places they can eat etc. and be understanding that they are comfortable with these situations.