Not just losing bread

The normal response to people finding out someone can’t eat gluten is the lamenting of lost bread and cookie opportunities. But actually, there are a lot of good breads and cookies in the grocery store and thousands of recipes out there as well. That’s not the hard part, but it’s the most visible.

The things that are the hardest to accept are the more invisible ones. The foods that you only ever had on occasion or things that were reserved as ‘restaurant’ foods. Because of issues of cross contamination, I can’t order most anything fried at restaurants, even if it isn’t breaded. This means with my bun-less burger I get a side salad, no french fries. That means no milkshakes (on top of not doing well with dairy) because of malt flavoring and mix ins that can end up in my ice cream. This means having to say no to the lovely Lindt truffles my professor brought for the last day of class (it’s that damn barley malt again). It means not being able to have chips and salsa at Mexican food restaurants, unless they have special gluten free ones like Maudie’s in Austin, TX and Owl House in Rochester, NY.

I can honestly say I don’t miss bread, pasta, pizza, baked goods galore, and other normally gluten filled foods. We’ve found a way around them. I don’t know if it’ll ever get to the point where most restaurants that cater to gluten free would keep fryer oil separate and safe. Right now, however, it’s the last week of class, and I really just want a burger, crispy, crunchy diner fries, and a huge chocolate milkshake. But I know that’s not going to happen.

This has been a message from your Friendly Neighborhood Celiac.

My Immune System is a Scaredy Cat

My immune system is a huge scaredy cat. All it takes is around 20ppm of gluten and it freaks out and starts killing my small intestine. No big deal.

I had to reset my “Days Without Getting Sick” count after this weekend. I lost my combo bonus of 130 days without any signs of getting glutened. Somewhere over my Thanksgiving holiday, it found me. The rough part is, I can’t recognize the symptoms anymore. They keep changing on me. The end result is always the same but the beginning and intermediate steps are not what I thought they were. I noticed I looked a little pale and washed out on Saturday night but thought it was from a lack of sleep. I woke up with a searing headache on Sunday but thought it was just dehydration. By this morning, there was no denying the cause of my feeling like crap. So we’re back to 2 days without a gluten incident.

 

This has been a glutening from your Friendly Neighborhood Celiac

“I’m gluten free too! Well, except…” No.

If you look around most of the celiac community, there are mixed views on the boom of the gluten-free trend. There are more products and restaurants that cater to this new demand, which is great, until some one gets sick.

I personally think this boom is a good thing, or at least it’s a good start to making gluten-free more available. I got diagnosed after the boom began, so I can’t compare life pre- and post- popularity. I am thankful that there are more products and that there are finally government regulations about labeling products as gluten free (though they don’t entirely go into effect until August 2014). I’m happy more restaurants have menus that I can pick from with all the necessary accommodations spelled out in the description.

But this all has a dark side as well. The fad aspect of “gluten-free dieting” makes it so that it can be hard to be taken seriously when I emphasize what precautions I need to take. When I ask for the gluten free menu, theres a nagging part of me that reads into the expression of the hostess of if he or she thinks I’m just one of the fad people. A lot of times, I tell my waiter (or waitress) that I have Celiac’s or at least that I’m gluten intolerant while pointing out that I’m ordering from the gluten free menu. I feel safer this way. The fad followers don’t need a different cutting board or for gloves to be changed or for certain utensils to be used. This creates a dangerous situation because requests for gluten free won’t always be taken to the extreme that they need to be for people with Celiac’s. That is a risk we take any time we eat food not prepared by either ourselves, a trusted spouse or family member, or in a gluten-free facility. And that part just needs to be dealt with on a case by case basis. I usually only go to restaurants that have reviews on Find Me Gluten Free (an amazing app I’ll probably go into more depth on later). I don’t want to be the guinea pig. Even then, there is a possibility that I will get sick. Then that restaurant earns an immediate spot on the “no go” list.

My main issue with the fad is people labeling¬†themselves as gluten free without going through the same precautions that someone who will get very ill (aka someone with Celiac’s or a severe case of Non-Celiac Gluten Intolerance (NCGI)). This is what creates the most danger. This is from people who say “I’m gluten free” and ask people to be accommodating but then eat the wheat based muffin/cookie/bagel/bread/whatever anyway. This teaches the people around you that “gluten free” is not something to be taken seriously. It’s really confusing. It also makes it so I don’t know whether to trust food offered by that person. How far do the exceptions go?

The general point I’m trying to make with this rant is: Don’t call yourself gluten-free if you fudge the lines and eat gluten products. It makes it harder for people who are actually totally gluten free to get the level of care and accommodation that we need and to be taken seriously. Yes, it might make it easier to explain why you’re turning something down. I get it. If you do want to be completely gluten free, make sure you’re really cutting it all out. I’ll write a guide eventually, but Shauna Ahern has some really good resources at her blog Gluten-Free Girl.

This has been a rant from your Friendly Neighborhood Celiac.

How this all began

This is not the beginning of the story. When this story and journey began, I had no idea it would end up here.

I began showing symptoms of general gut issues in 2006, I think. That’s at least when I first remember the pain. I knew how to deal with it, so that wasn’t the beginning either. I got my first tests done in 2010 to rule out Crohn’s or anything worse. Gluten was mentioned and I had a concept of being “gluten sensitive.” I also cut out all caffeine to control spasms in my colon. Everything kept getting better after that summer, until my junior year of college. I don’t know what did it, but the switch flipped and was never going to go back to normal again. After one Tuesday in February, where I woke up feeling so sick and uncertain of what my body was going to do to the point where I almost stayed home from school, I went into the university health center and set up an appointment to talk about all my issues. I got the blood test done thinking it would say “you probably shouldn’t eat gluten at every meal.” A few days later, I was checking my email on my phone when I saw it: “Your blood tests have come back positive for Celiac’s disease.” I pretty much started sobbing in the middle of the hallway. I met my boyfriend in the food court and showed him the email while having my first “Celiac breakdown” as I call them. I had no idea what I could eat anymore. Due to other health issues, I wasn’t able to get my endoscopy scheduled to super confirm Celiac’s and make it so there wouldn’t ever be a reason to touch gluten again. I stayed in my classes while going back on gluten after being gluten-free for three weeks. It wasn’t the best thing for my grades but I was just ready to be done with this whole process. In mid-April, my mom came to visit and take me to my endoscopy and I haven’t looked back ever since.

So this part of the story begins now in October, five and a half months since the last time I (intentionally) ate gluten. There will probably be other flash backs with lessons attached, kind of like How I Met Your Mother. I’ve learned a lot in half a year, and I think teaching others about Celiac Disease and sharing my own experiences is an empowering way to navigate all the frustration, questions, delicious food and new found health that comes with the diagnosis.

This has been a message from your Friendly Neighborhood Celiac