Saturday, June 7, 2014

The Gluten-Free Insanity I'm Now Living In

I’m starting to understand why some families with a celiac person decide that the whole house should go gluten-free.

I always knew there was a remote (apparently not so remote) possibility that I had celiac disease. By following a gluten-free diet for my GI issues for the past three years, I figured I was following all the important precautions, and if I did happen to be celiac I was fine either way. Sure, a crumb slipped here or there, or I’d bite into my son’s mac n cheese noodle to see if it was done cooking and then spit it out. Sometimes I used vanilla extract without knowing 100% if it was gluten-free. I really didn’t think these little things mattered. I assumed that I had gluten-intolerance and not full-blown celiac disease, and so no need to be crazy with my anti-gluten lifestyle.

Now, thanks to my recent diagnosis, I know that those little things added up and were messing up my body and making me sick. And people, this gluten stuff is crazy. It’s EVERYWHERE and spreads like WILDFIRE.

Let me share a few of the crazy things going on around here right now:

  • I can no longer use plastic containers for mixing, cooking, serving, or storage if they have previously had gluten in them. (They scratch and hold gluten.)
  • I can no longer use plastic kitchen utensils if they have previously touched gluten. (They also scratch and hold gluten.)
  • I can no longer use non-stick pans if they have touched gluten. (Same deal. Scratches and hold gluten.)
  • I can no longer use our colander because gluten gets stuck in the holes, and I am supposed to go buy a new one exclusively for me.
  • If I touch my child’s gluten-filled waffle in the morning, I have to immediately wash my hands so I don’t cross-contaminate my own food or by chance put my fingers in my mouth.
  • I have to have my own dedicated toaster that doesn’t have any gluten items in it.
  • We have to buy a new cutting board (so sad, I LOVE our fancy wooden cutting board!) and new wooden mixing spoons.
  • I have to make sure my shampoo is gluten-free or else pay special attention to never open my mouth in the shower while washing my hair.
  • I have to make sure my lotion is gluten-free so I don’t accidentally transfer it to my mouth.
  • I have to check all my medications and make sure they are not made with any gluten products.
  • The stickers on produce tend to have gluten in them. I have to try to select produce with no stickers or take a risk and scrub the produce before eating.
  • I can no longer lick envelopes. The glue often has gluten in it.

Everything I put in my mouth is a possible attack on my body, and I have to scrutinize and consider every possible source of gluten on the thing about to touch my lips.

It’s insane, people. Insane.

I can’t lie. I had a slight adult pity party tantrum last night. Like kinda lost it and sobbed to Dave. “I have this chronic autoimmune disease, I’m going to have it for the rest of my life, and I know I was already eating gluten-free but I am NOT ok with this, and now I feel like I can never eat at a friend’s house or a restaurant again because I might get sick, and I can’t take chances because it is a health risk, and previously it was kind of like oh, I shouldn’t eat gluten because it doesn’t make me feel good, but now I CAN’T eat gluten and it’s for FOREVER and our kids are at risk and I’m paranoid even in our own kitchen and I’m at risk for all these other autoimmune diseases and THIS SUCKS!!!”

Yeah, that was me last night. Tears pouring, nose clogged up, a pity party mess. I think I just needed a moment. A moment to let out all my insecurities and grieve. I never thought that if I was diagnosed that I would need to grieve. I didn’t think it’d affect me that much. But I was wrong. The diagnosis has been an emotional blow.

BUT.

Honestly, since being way more careful about cross-contamination the last few days (although I still use a lot of cross-contaminated kitchen items because I haven’t bought new ones yet), I feel SO MUCH BETTER. Not 100%. Still a little nausea here or there, maybe a slight amount of bloating. Still in the bathroom more than normal. But SO MUCH BETTER. I’m starting to think that all of my issues over the last several months haven’t been another food issue, as I was concerned about, but rather just cross-contamination of gluten. And I’m so glad and relieved to have the pain dissipating and to know that I probably have an answer to all my recent issues.

Last night Dave said he’s just relieved to finally know what’s wrong with me. And I know he’s totally right. It’s a relief and a blessing to finally know.

4 comments:

  1. Sorry to hear about your diagnosis! Not sure if you read this blog, but this lady's son has celiac and she writes a lot about it and could be interesting for you to read as I think all her family eat a gluten free diet and she posts recipes, etc. It's http://findingjoy.net

    Hope you feel better soon! Keep smiling, there is always something to be thankful for :)

    ReplyDelete
  2. Erin @ Two Story CottageJune 7, 2014 at 4:44 PM

    I really feel for you!! A celiac diagnosis is a lot different than choosing to be gluten free. That cross contamination thing is hard. I really haven't done that much with Reid and his allergies except using different utensils so it does make me question my own practices with him. I'm careful but there are areas where I could probably be more careful! And he has had a few flare ups here and there where I can't figure the source.


    I have the exact same feelings that you do about the autoimmune disease thing. I know it isn't me - it is him but I can't really dwell too much on the big picture of autoimmune disease and the longterm issues. I feel like we survive and thrive pretty much with the one day at a time theory. If I start to think too far ahead (elementary school!), teenage years, etc I get worked up so I am truly focused on the present and sort of just crossing my fingers and praying about the future. I will pray for you too! And a little pity party is okay every now and then. It is a big deal!

    ReplyDelete
  3. Thank you for your kind words! I will check out her blog. :) And you are right, there is definitely always something to be thankful for. :)

    ReplyDelete
  4. Thank you so much for your supportive words, Erin. :) I really don't know how you're doing it with Reid, and I hope that it's starting to feel easier and more normal for you now. School is definitely going to be a challenge - but you'll conquer it! I assume you understand what I mean when I say all I can think about right now is celiac disease and food and how I feel like my normal life is gone. I'm sure you went through this with Reid's diagnosis - maybe you still are. I feel such relief when it's not an eating time right now. Like for a couple hours I get to forget that I'm celiac and just feel like myself, not this new celiac girl who has to ask her friend to please pull out a clean dish towel for her because she can't dry her hands on the towel hanging in the kitchen, and to please get her some scissors because she touched her gluten-contaminated hands to her son's yogurt tube and now can no longer open it with her teeth (yes, both happened today). And like you said, I'm living one day at a time. I've really been doing that ever since I went gluten-free three years ago, because it was an incredibly difficult and emotional thing for me to do. If I ever pause to consider the fact that I'll never eat a Twix or Girl Scout Samoa cookie or Texas Roadhouse roll with cinnamon butter again it feels almost unbearable. But if I go one day at a time, and focus on getting through just today feeling at least remotely satisfied in what I get to eat, then I know I'll be ok.

    ReplyDelete