Yesterday I wrote a very long post about Celiac Disease and my journey. It was rather random, and if I do say so myself very good. Sadly, as I mentioned in the “Drawing a blank” post I lost the whole thing. I am going to try to re-create it today, although it’s not nearly as good as it was….
I have been living gluten-free for over a year and a half now. On one hand, this seems like a very long time, as if I have always been GF. However, on the other it seems like such a short time, as if it was just yesterday I started this journey. (Especially since, I have to be GF for the rest of my life) I was 18 when I was diagnosed, and it just seemed impossible, the idea of having to change so much forever. It was truly overwhelming.
I am certain that I grieved, over the loss of wheat, the loss of simplicity, the loss of my favorite foods. I was certain I would never find good food again. The first stage was of course denial, the doctor had to be wrong, and I just knew it. At this point, I had been GF for about a week. I went home, and ate four slices of plain white wheat filled bread, just to prove he was wrong. A half hour later, I was lying on my bathroom floor in the most pain I had ever felt in my entire life. (And I’ve had my appendix rupture and gallbladder die) Thus, denial was born and died on the same day…
I was angry and confused for the longest time, wondering why this had to happen to me; I bargained and pleaded with God for it to just go away. Nevertheless, every time I was exposed to wheat my reaction became worse. Eventually I realized I was getting better. I had never been really healthy before, but for the first time in my life, I had made it over 5 months without going to the doctors! I made it through an entire winter without getting strap (a total first) and without getting a major ear infection!! (another first)
Around this time, I came to some of acceptance of this new life of mine. I am not going to lie to you and tell you that it’s all happy now and that I love CD. Because frankly I hate CD. Some days more than others. There are days when all I want to do is go to McDonalds/Burger King/Sonic/Pizza Hut etc. and just order my favorite menu item and eat it. I know I would regret it shortly thereafter, but that does not stop me from wanting it. Thankfully, whenever this happens Dad is always there to gently remind me how bad I feel after getting a tiny bit of gluten, much less eating a whole ton of it.
I don’t know if I could have managed to come to what acceptance I have now without Dads help. He has been amazing through all of this. He has never once tried to make me feel bad about it, suggested it was all in my head, or told me I was “too expensive” like some of my other relatives have. He helps me find new foods, is always super careful not to CC me, and is always on the lookout of foods I might enjoy.
I miss the simplicity I used to have, the ability to just go anywhere and eat anything without doing tons of research beforehand. I miss being able to travel anywhere without having to figure out if I have to bring food, or if I can get it there. And most of all I think I miss Kraft Mac and Cheese, as it’s the only food I haven’t found a better substitute for. (Sounds a bit silly huh?)
Well, I admit this post isn’t as good as the first draft, but I hope you liked it nonetheless… I want to leave with a list of FAQs (all that I have been asked) and please feel free to ask questions…
The question I am asked the most
Q: Can you still eat white bread?
A: NO!! White bread is bread made with bleached flour; it still has wheat in it
Q: Can you eat organic bread?
A: Not unless it contains no wheat, just because something is organic does not change what it is made of…
Q: Is CD an allergy?
A: NO! CD is an autoimmune disorder, not an allergy
Q: Can’t you just go to restaurant XYZ and just take the bun/bread/etc. off
A: No, while CD is not an allergy the best way to explain this is to use a peanut allergy as a comparison. If someone has a peanut allergy, they cannot just pick the peanuts off or out of whatever they are eating, because it will still make them very sick. Same applies to CD and wheat, once the wheat touches it; it leaves traces behind that won’t just ‘go away’
Q: Can you get glutened by drinking after someone who has eaten wheat?
A: Yes! Or at least I am sensitive enough that I can….
I look forward to hearing from y’all, and I will try to answer each question to the best of my abilities.