I was excited when I found out I had Celiac Disease. Having nothing would obviously be better, but in comparison to other conditions I have, Celiac Disease is a walk in the park. While I realize this may not be true for all people, it’s a disease that generally requires no expensive prescriptions (for me, no prescriptions at all), no surgery, no frequent doctor visits. In fact, once you know what’s wrong with you, you don’t even NEED health insurance to stay healthy with Celiac Disease. There are even other stomach conditions that do require surgery or medication or just provide no answers.
This doesn’t mean I don’t take it seriously. It’s very serious and I know symptoms can be much worse for other people. I know others have spent years and years battling various diagnoses and trying to figure out what was wrong with them to no avail. I know it’s not easy to have and not treating it can lead to serious complications and a life full of misery and pain. My story isn’t that dramatic so maybe that’s why I have the perspective I have. I do have dramatic stories but they involve my asthma, allergies, eczema and life threatening food allergies. Having all those issues and conditions contributes to my perspective on Celiac Disease. Unrelated to CD, I fill at least four or five prescriptions a month. The pharmacists know me by first and last name. I have been to the hospital more times than I can count due to my asthma, and in ICU a handful of times as well. I have nearly died from asthma. I need to be on multiple medications to treat it. I need to monitor it. I can’t treat it just by eating a certain way or taking supplements. While Celiac Disease sometimes makes me exhausted, confused, irritable and miserably sick with stomach issues, for the most part, staying gluten free eliminates these issues.
All that being said, here are a few things about Celiac Disease that really suck.
1) MANY searches that direct to my blog are about people who have had their boyfriend/husband/spouse END A RELATIONSHIP with them because of Celiac Disease. Either these people are completely unaware of other issues in their relationship, or they are dating/married to complete jerks. There are people out there who are serious drug addicts, who lie and cheat and steal from people they love, people who are verbally, sexually and physically abusive, people who are uninvolved and distant, burying their head in their work to avoid intimacy, people who are irresponsible and can’t manage their money or lives ….(and no…. I know nothing about people like this personally 
). And then there are people who are ending a relationship with someone because the OTHER PERSON CAN’T EAT GLUTEN? Are you kidding me? Food allergies I could almost understand because what my boyfriend eats can actually kill me or cause a severe allergic reaction (and this has happened). My life has changed so minimally since being diagnosed with Celiac (and again, I realize that’s not the case for everyone). Basically, the only thing that has changed is I DON’T EAT GLUTEN. Yes, my boyfriend has had to make some adjustments and concessions but that is what you do when you love a person. I do most of the work. I research restaurants in advance. I read ingredients. I watch out for my own health. But, on the other side, I’m still active, I still enjoy going out with friends, I have a positive attitude about it. Why would someone end a relationship over this? If you aren’t sure how to handle your food allergies or Celiac Disease in relationships and dating, read my post about dating with food allergies and Celiac Disease.
2) The last time I went out to eat was December 4th for my boyfriend’s birthday. I got very sick and felt the effects for over a week. I haven’t been to a restaurant since. I’m not avoiding them intentionally but with the holidays and life, I haven’t had time. Not coincidentally, this is the best I’ve consistently felt since going gluten-free. I’m not going to stop eating at restaurants because I don’t like the idea of living in fear, or letting this run my life. I have decided to change the way I go out to eat though, which I’ll write about in another post.
3) Because I try to NOT over-identify with Celiac Disease or food allergies, or asthma and eczema, this blog is a bit of a struggle. I write here to share my experiences, and to hopefully help some people. But in doing this, it forces me to think about and identify with these conditions on a regular basis. This is why I haven’t been writing much lately. Sometimes, I just don’t want to think about it. Without this blog, I wouldn’t think about health issues nearly as often as I do. I enjoy reading about other people’s experiences, and it’s fantastic knowing there are other people out there going through the same things. But sometimes, I’d like to just live my regular life which is, for all intents and purposes, normal. My time is spent reading, going to the gym, cooking the same things I cooked before, planning, dreaming, thinking, writing. Somehow, I want to find a happy medium, between writing here and helping people and being known as “the girl with Celiac Disease.” It’s not how I view myself and it’s now how I want other people to view me.
In other news, I now have a Facebook page, so “Like” me over there to stay up-to-date on my blog.
Happy New Year, everyone! Hope you all have a healthy, positive, inspiring 2013!
I enjoy reading your posts. I can identify. I don’t want to be identified as the girl who is allergic to so much, yet I am that person. Sometimes we need to get away from it though to allow ourselves a break from talking about it. My daughter was here visiting for two weeks during the Christmas holiday. I didn’t write much and reposted a few things. I wanted to just be mom and grandma and have fun for awhile. You offer so much information and I am glad that I found your blog.
You are that person but that is just part of who you are! I’m sure people who know you better than I do could come up with an enormous list of things that identify you besides your allergies and chemical sensitivities! I’m glad you were able to be a mom and grandma over the holidays and have fun with your family
I am astonished that someone would end a relationship over celiac disease! That’s in essence like saying, “Well, I love bread/pasta/baked goods way more than you…so goodbye”. !!!!
I am completely with you there on #3. I have been pondering on that point myself, having posted a lot lately and considering if people will think I am either needy for attention or harping on the fact that I have eczema (neither being true). For me it is more of an outlet to vent and document my experiences all in one place, since I wouldn’t feel comfortable discussing all of my personal eczema struggles and triumphs with other people that I know personally. (Not even my husband knows the name of my blog as I refuse to tell him….not that I care if he reads it, but I don’t want to come off to him as constantly talking about eczema, LOL).
But I absolutely agree that over-identifying can be dangerous. With chronic conditions and diseases, it helps a whole lot more to focus on ourselves as a whole person and what we CAN use, do, eat, experience, whatever. In another sense, it is good for a blog to have a “hook”, a singular subject matter that defines it, and I am sure your blog has helped many other people with celiac disease. I know for me, that even though I don’t have celiac, I’m always interested by your perspective!
I don’t have Celiac Disease but I do have Bipolar Disorder and I go thru the same things about identifying too closely with my illnesses and with identifying just as myself. I used to identify with my work but the illnesses put an end to working so now I Have to focus just on myself and who I am and can be in the world. It’s like saying I Am Bipolar or I Have Bipolar. I try to stick with the notion that I Have it, not Am it. It’s a little thing but it makes a big difference. I also think talking about these things is important but has to be kept in perspective. Not too much but enough to keep things flowing freely in our psyches.
Steve
I totally know what you mean about constantly focusing on and thinking about health issues. I could spend a whole weekend in bed researching “how to help eczema naturally” when in reality I’ve read the info thousands of times. But reading other people’s blogs, forums, and websites really does help. Sometimes. haha!
That being said, I always enjoy your posts so I’m glad you’re going to still make them occasionally?
I’ll still post — just probably not as often as I was
and now imagine that you are not a woman but a man – can you imagine WHICH pretty health woman will be interested in man which cannot eat so basic food like pizza or have a cake? every woman love to bake and cook for family, I just know a women which are celiac and having a boyfriends but not know SINGLE celiac boy having a relationship.. I think that this is not disease, it is just a nature way how to not having a kids for boys which are genetically weak…