After many yesrs of feeling ill and being told I'm just whiney, I was diagnosed with Celiac Diseas six years ago and I am here to show the very raw and real struggles I go through on a daily basis.
1. The longer it takes someone to get diagnosed the more likely they are to develop other autoimmune diseases and allergies. I didn't find out soon enough and I'm also allergic to dairy and corn. At first this was very hard but I've learned some many new ways to make all of my favorite foods! I can make homemade pizza, enchiladas, egg rolls, pretty much anything you can think of.
2. If I have any amount of gluten I will be sick for months, experiencing exhaustion, bloating, rashes, and brain fog, just to name a few. It will make me feel crazy, everything I eat after being contaminated makes me sick, I'll get a rash and my skin will feel like it is on fire, and that it'll never get better....
3. My autoimmune disease causes me to be iron deficient because my body has a hard time absorbing nutrients. I had tried for years to bring it up. My doctor had me take iron pills and eat lots of iron rich foods such as dark leafy greens, red meat, and beans. I went in for a follow up six months later, I was so hopeful and my numbers didn't change. Then she had my try different iron pills that didn't work. Next my doctor referred me to a gastroenterologist to see if he could help me, he suggested I do iron infusion. This pushes iron through an IV start into my blood stream. The process takes about thirty minutes. I was scared but at that point I was up for anything. The procedure was uncomfortable but bearable. After waiting a few weeks I had my blood drawn again to check my levels...Finally they went up!!! Since then my levels have stayed up but my stored iron is still lower and it's something I will always struggle with. I consider myself lucky though. Other patients can struggle with vitamin D, calcium, vitamin D, zinc, B6, B12, and folate.
4. It never gets easier being told, "I would kill myself" or "Your life must suck". No, no you wouldn't kill yourself. No my life doesn't suck. If something makes you sick you don't want to eat it. And if you have no choice you would make a change also.
5. I hate talking about it. It's the worst when I have to talk about it with a waitress/waiter, either it goes really well or really badly. But, if I don't, I could get sick.
6. I hate feeling like an inconvenience to others. When I go out it's always, "Oh you probably can't eat there. Where can you eat?" The last thing I want is for my disease to affect others.
7. Snide comments and jokes make me feel like I'm seen as a lesser person. I hate feeling like I need to justify myself about something I didn't choose and have no control over.
8. The littlest things bring me such joy now such as when I find a product that is now made gluten free. I can't express how excited I got when I found gluten and dairy free Oreos! I have learned to appreciate the weirdest things that others don't understand.
9. I always have food with me because i never know if i'll be able to eat the food that is around. Recently I flew and I packed blueberries, two bananas, two protein bars, and a granola bar. It seems a bit much but you'd be surprised how hard it is to find food I can feel comfortable eating. People always think I'm paranoid or over-prepared but I'd rather be safe than sorry.
10. Last, but not least, I constantly worry about my health and feel betrayed by my body, I am immunocompromised which means I can get sick a lot more easily and, once I'm sick, it takes me a lot longer to get over it. Somedays i'll feel completely exhausted and there is nothing i can do about it. I think, "Why me? What did I do to deserve this?" It's a part of my life and I deal with it by taking it one day at a time.
In no way shape or form did I write this to make you feel bad for me, I wrote this in hopes that the next time you meet someone who is allergic to gluten/wheat you have some compassion for them. I want to show the real struggles we go through and to raise awareness for Celiac disease. It is real and millions of people have it. I hope that one day it will be taken more seriously.
