Day 4: How have your friends and family reacted to it?
Celiac Disease: This one was a bit of a shocker, since, as I previously mentioned, no one in my family is affected by celiac disease that we are aware of. Overall, it was a huge change when you really realize what a gluten free diet entails. We got rid of all gluten in the house. We had to buy a new toaster that only I can use with my gluten free bread. We have an entire cabinet full of various kinds of gluten free flours that can be used to bake and cook with. We invested in a chest freezer because sometimes we have to travel pretty far to purchase good gluten free food and need to stock up (like my favorite bread that for a time could only be purchased on the other side of the city; we would buy a bunch of loaves and freeze them.)
I think the biggest adjustment was understanding the risk of cross contamination. Even a crumb of gluten is enough to make a celiac sick. Condiments are tricky. If you’re going to make a peanut butter sandwich on gluten bread, you can only dip your knife into the jar once before it touches the bread, otherwise you’ll contaminate the whole jar with the knife since it touched the gluten bread and then I can’t eat from that jar again. Things like that were tricky to adjust to at family gatherings, but everyone is pretty good at it now! My family has also gotten very good at reading food labels when going shopping and
interrogating investigating restaurants that claim to be able to do gluten free before we go there, just to make sure I’ll be safe and not blow up the restaurant’s restroom halfway through dinner.
My friends understand that there are lots of things I can’t eat, which is why I never go out on group outings to restaurants. And yes, it does still hurt when someone brings in goodies to work that I can’t eat. I’m used to it, but that doesn’t mean it still doesn’t make me feel left out most of the time. Sometimes I just ask if I can sniff the donuts before everyone eats them all, just to satiate my sweet tooth a little.
The worst part of having to eat gluten free in public? Weddings. I once went to a wedding where all I could eat throughout the entire meal was a carrot. I had some protein bars in my purse that I ate, and we had rescue food in the car that I wolfed down on our way home from the reception since it was an hour drive home. Obviously, I don’t expect caterers to be able to handle one gluten free meal out of a hundred guests, so you have to just go with the flow and deal with it.
Endometriosis: I think the hardest thing with this was getting people to understand the level of pain I was in on a regular basis. I don’t think it was really until I told everyone I was sending my medical records to the Center for Endometriosis Care in Atlanta for a second opinion that everyone realized how seriously this disease was affecting me. I think they all thought I was crazy or over reacting at first. But I work at one of the country’s top hospitals, and if they couldn’t fix me, something must seriously be wrong. Although I remember one off hand comment a coworker made about about a family member, “My sister-in-law has endometriosis and is infertile, but whatever.” Now, this was actually prior to my first surgery and actual diagnosis, but endometriosis was strongly suspected. All I had to say to her was, “That could be me, you know.” My coworkers saw me attached to my heating pad at work and could tell I was miserable prior to my excision surgery (since my first surgery was ablation, which is not effective for treating endo). And I know they felt bad, but there was nothing they could do except support me as best they could.
My husband saw the worst of it. He was the one holding me while I cried, waiting for the pain meds to kick in so I could get some rest. But there was nothing he could do either. Nor could my family. It was just a big waiting game until the surgery that, as of almost two years later, has put me into remission, as I like to call it.
I like to think my attempts to raise awareness for endometriosis have been effective. I’m sure everyone is sick of hearing about it all the time, but I’m a woman in a mission to make sure as few people have to suffer through this disease as possible.