Originally Answered: Someone with Celiac Disease?
I was so sick for almost a year, it was terrible.. I was told I had IBS, lactose intolerance, an eating disorder, needed a therapist, etc. it was all very frustrating until my husband and I figured it out and demanded the celiac screening blood work! I was so positive for gluten antibodies that I was literally off the measurement scale.
Getting in to see a gastroenterologist is the next hurdle. You feel so bad and just want to get better and it can literally be MONTHS before you can get in... even if you do, it is likely that you will get bumped for a more urgent appt or procedure and you have to wait some more.
THEN there is the whole change of diet that you have to do. Some dieticians are very helpful, others not so much.. happily I live near a really good store so I have plenty of gf options. I already made my own bread and ate whole foods only, so that wasn't such a hard transition. The food is really expensive though. It is $6.50 US for a bag of Glutino pretzels here. A reg bag is about $2.50 For some people it is a total life style change, and that can be very hard to adjust to.
The hardest part is keeping safe in a very gluteny world. It is hard to go out to eat (I stick to Indian restaurants mostly, most of that is gf and vegetarian) sometimes. Sometimes people accidently gluten you because they simply do not know how to keep from contaminating your food. You have to ask a LOT of questions and double check everything, so you have to be ready to assert yourself, talk to chefs and managers, etc. just so you can walk out without being sick in a few hours....
Then there is the pressure from people who don't get it. "Take a benadryl" is what I get a lot of. Other people just want me to "try a little" of something, which I can't, then they get their feelings hurt, or angry or something. I tend to ignore and avoid those people. Other people don't believe you when you describe how debilitating it can be if you are glutened, etc. and question how ill you feel. sigh.
Then you have people who feel like your medical condition is a pain all around and no one else should be bothered to deal with it.
So,all in all, a lot of times I simply do not eat out or at other people's homes because I don't want to get ill. Socially, it is a pain in the tush, lol! I generally eat before we go anywhere, and try to make plans that don't include trying to eat out. (Hiking,biking, baseball games, etc.)
Alll in all, since my kitchen and house is gluten free, I feel pretty normal most of the time. I bring my own plate to picnics, eat before I go out or pack something I can eat and take it with me. I do sometimes want to make a card that explains celiac and hand that out when people ask questions about why I am not eating (no, I do not hate your food or have an eating disorder").
I do feel better now that I am gluten free, but I wish the diagnosis came sooner. I have good and less energetic days, I get sick for a month when I do get glutened, and it is awful putting your life on hold while you heal. I think it is much harder for teens than any other age group.
I can go on and on, but instead I am sending you to the celiac.com forum where you can read the postings.. that should help a lot getting a pov and tons of info on this very common genetic disorder.
Hope it helps and I hope I helped you with your report!