So. Here’s a thing: I have Celiac disease. Turns out, I’ve probably had it all my life. Turns out, there’s a lot you don’t know about this disease – there’s a lot I didn’t know, like this meme, for example. I’ll be sharing more about this as time goes on but for now, here’s this snippet from a new friend’s blog:
“I want you to know that this isn’t an “upset tummy” disease. All celiacs are different, and my symptoms affect my entire body. First it feels like icy fingers are fiddling with my brain. Then my stomach is a mess and fatigue hits me like a truck. I get hot flashes, mood swings, bladder pain, aching joints, and headaches. The worst part lasts 1-2 weeks, and I don’t feel like myself again for at least a month. Sometimes I think I’m better then BAM, I’m driving with my kids in the car and I can’t focus my eyes or remember where I’m going. I want you to know it’s scary.
I want you to know that I’m sick of talking about celiac disease. But if we’re going to hang out, it’s going to come up. Social interactions always seem to involve food, don’t they?
I want you to know that nothing about this is easy. I thought being a dietitian would make the transition smoother. It hasn’t. I want all health care providers to hear this: Stop telling your newly diagnosed celiac patients that treating the disease is easy. IT’S NOT. And stop calling celiac disease “trendy”. It’s like a slap in the face.
I want you to know that as much as it helps to have awareness and thousands of gluten-free options these days, those things hurt us too. Food companies and restaurants are cranking out “gluten-free” items as fast as they can to cash in on the fad, and most of them aren’t doing it responsibly. Then we get sick.
I want you to know that I have to think about celiac disease all the freaking time. Every time I put food or drink in my mouth, lotion on my skin, gloss on my lips. Every time I serve my kids pizza at a party and have to scrub my hands. Every time someone asks if I want to meet for lunch.
I want you to know that as much as I hate this disease, I’m thankful to know the cause of my health problems. I’m thankful to have a name for it.”
It’s a complicated disease, and the hardest part really has been just getting a diagnosis that was accurate. This disease has been effecting me for most of my life, and steadily gotten worse – especially in the last year. I’m grateful to finally have a clear idea of what’s going on with my body and how to manage it (there is no cure or medication for it, only diet and lifestyle changes will make a difference and even that is very hard to manage where I currently live). But, I’m disgusted with one aspect of my situation because theoretically, it didn’t have to be this way.
Thanks to being adopted in a state that has been denying me access to my medical history for the last 38 years, I had no information that could have given me a clue that something I’ve likely suffered from all my life, but has recently gotten so bad I felt like I was dying, was ever a possible issue. This raises a fighting point for me with my state and the process and laws of sealed adoptions. I’m really angry, because if I’d known my family’s medical history I might have saved myself a lot of time and money spent on ridiculous testing looking for things that weren’t even an issue, not to mention suffering, worrying, and misery.
The good news is, I’m not crazy! I KNEW it was something. I knew it was not just all in my head, or like some doctors tried to insult me into believing it was – hormones, because I’m just a silly perimenopausal woman. Yes. I am a perimenopausal woman, BECAUSE OF CELIAC DISEASE. Daft imbaciles. Yes, having a name for the problem is good. Great. Wonderful. The bad news is, Celiac is a bitch to manage.
Random story: It’s funny, when Dorie was sick she was researching something about one of her treatments and said to me, “Oh my God Christy, this sounds just like you!! I think you should be tested for this, since you don’t know your history!” I was all, “nahhhh, that’s ridiculous.” I didn’t even think about that moment until my doctor very calmly announced, “It’s a C. Good news? Not cancer. The bad news is, it’s Celiac disease.”
He didn’t sugar coat. He told me over the phone, explained some things, gave some instructions, and he set aside an appointment time just to talk to me. No nurses, no more tests, just a meeting in his office to do little more than encourage me that I can manage this, and I can do in a homeopathic and very gentle way (he knows my disgust for pharma and supports me in my choices about my body – so grateful to have found him). He also supports my anger at the system, and has some of the same issues as a medical professional. Maybe we can work together to fight these ridiculous laws.
Closed adoptions in my state from1980 (I believe) onward aren’t effected. Any closed adoptions from before that date are and forever will be closed – 100%, including valuable and very much needed in some cases, birth family medical histories. It’s an important thing. What should I do? I don’t know, but I hope I can do something to get some changes made.
Anywho, welcome to this new journey I’m on. Along with everything else, I don’t know how I’m going to do it. But you know me, I will.