When I got my celiac diagnosis in 2007, after a year of not feeling well, I ASSUMED I would start feeling better if I just stopped eating gluten.
Much of what I read online led me to that conclusion.
But like many things with celiacs disease, assumptions and reality are two very different things.
Which leads us to today’s awesome guest post from Kara Pena at Kompromised Kitchen. Kara is a fellow celiac who “loves to read classic literature, write mediocrity, serve her church, raise her daughters to become women she would want to have as best friends, and love her man.”
It’s all you Kara…
I have been living with my Celiac for three years now and I continue to be amazed and frustrated with this disease. The havoc it can wreak, and the curve balls it can throw, constantly keep me on my toes. As soon as I think I have the diet down, something slips by me and I get sick. As soon as I think I know exactly what being ‘glutened’ looks like in my life, I get a new or changed symptom.
Never a dull moment with this one.
My friends say to me, “Well, at least you won’t die”. Oh, really? Apparently I can.
Or they say, “Well at least you know whats wrong with you now, so you can get better”. Another, REALLY?
I have been struggling through issue after issue since my diagnosis: my blood was so bad I had to have an ablation surgery that had the potential to toss me into pre menopause (sorry, I know this is mostly a guy blog).
I gained seventy pounds that has decided they love me so much they never want to leave, even though I was paying $400 month to a trainer to get rid of them, (p.s., I’m not a sedentary person. never have been).
I had to stop my go-to workout of running, due to osteopenia, that I’m trying to reverse. Found out I have Hypothyroidism, and that a whole different bucket of fun. All from this vicious little _ _ _ _ _ of a disease.
I am a bulldozer of a woman, and fighting comes easy to me. But I have to say, most days Celiac kicks my butt. I would love to complain about this more, but I am usually too tired, (I know, AMEN!, right?)
I look back through the consistent fog in my brain (mostly due to my disease but partially because I have adult and teenage daughters who keep late hours), and realize that some of my most momentous blows to the face have come from my expectations; what I believed at my diagnosis versus the reality of this disease permanently taking up residence in my home with my family and I.
Here are a few:
- I assumed that I would drop that extra ten pounds I had put on.
In reality I put on about 5 pounds a week until I hit a ceiling of 70LBS only to find out I have Hypothyroidism and now struggle to inch my way down.
- I assumed that I would finally get my energy back.
In reality, I feel more tired than ever.
- I assumed that once I learned how to keep gluten out of my life everything would go back to before.
In reality, keeping gluten out of my life would take the rest of it.
- I assumed that my friends and family would understand and “get it”.
In reality, most of them think I’m exaggerating and think I would be fine if I just didn’t eat the bread.
- I assumed that I would take a year, get everything under control and get my life back to the way it was before my Celiac triggered.
In reality, my life will NEVER be the same.
- I assumed that once I got a clean bill of health I could get back to the things I was passionate about.
In reality, Celiac disease and its awareness became one of my greatest passions, (and I’m still trying to get that clean bill).
To quote my youngest daughter: “It’s not that Celiacs have depression, it’s that they just don’t get any good news”.
So let me try to turn this around since I sound like Debbie Downer.
What I am learning day by day is that if I don’t try to pack her up and move her out, I do better. See she isn’t going anywhere, so we should make friends. She is going to become my closest confidante whether I like it or not.
I will need to listen to and consider her voice above the voices in my head, the voice of the woman I used to be, or even the voices of my well meaning but uneducated friends.
I will need to count the blessings of faith and family who have sworn to never turn their backs, always keep an eye out for gluten and promised to pick me up when she’s beating the crap out of me.
I will need to look up at the stars rather than down at the mud.
About Kompromised Kitchen:
I have always loved cooking, baking, etc. My kitchen has always been my second favorite room in my house. I am at peace there. For me working in the kitchen becomes a quiet world. The place I play, the place where there is no stress. When my girls were babies I dreamed of starting a catering company when they were old enough for all of us to be a team. When I was diagnosed with Celiac my kitchen was compromised. How would I ever be at peace in my kitchen again? How would I ever again make food that made everyone at the table groan? How could I ever make another birthday cake for a kid or do a baby shower since flour was now my kryptonite? I would get back into my kitchen and do what I do best. Cook, bake, play…with gluten free ingredients.
I started a gluten free catering company so a kid at his birthday would be safe and the guests didn’t feel like they were eating cardboard. I offer classes and consulting to teach Celiacs and those with gluten allergies how to enjoy their food again. I understand that once we leave our front door we are no longer safe, but I want people to know that in their homes they can experience true joy and pleasure with food again.