Penn State University recently published a study finding that women with celiac disease often suffer from depression, stress, body image issues and weight regardless of compliance with the gluten free diet. It also showed a higher tendency for disordered eating which is something I’ve written about in the past. That post had the highest hits of all time on my blog, showing it is a concern for many women.
For me, this hits me especially hard because I am in the fitness industry. As a fitness model, there is a certain expectation for appearance, body tone and overall physical fitness. This past year, I’ve spent all my time healing my body after diagnosis and making sure I’m healthy. Unfortunately, this impacts my ability to stay athletic and especially look athletic. I’ve taken a huge hit with this disease by gaining 20 pounds and struggling to complete a workout that 2 years ago would have been a breeze. People can say “oh you look great” or “I would love to look like you.” But, in this pretty little brain of mine, I have a completely different perception of how I want/should look. This completely ties into the body image issues discussed in the Penn study.
Now, granted my situation is different because I know all of you aren’t in the fitness and modeling world and aren’t interested in the perfect body, but we all have a vision of how we see ourselves and when we cant’ achieve that for whatever reason, it takes a mental toll on us. Women have the innate ability to beat themselves up over their own thoughts, even more than the comments of others.
After continuing to not feel well towards the end of last year, I ended up getting all my blood work tested again in December only to find my Gliadin IGG and IGA antibodies increased, instead of decreasing which is likely why I’ve been so incredibly sore after all my workouts. My body is still fighting something and inflaming my joints to the point that I don’t want to workout at all. I’m talking one little workout will make me sore for 7-10 days. That is unheard of for me.
Then I come to find out from my doctor that corn elicits the same autoimmune response for people carrying the celiac genes (I have both of them). I’m to cut corn for the next 90 days and then have my blood drawn again to see if my levels improve. I can tell you that just one week of being corn free and I feel so much better. My body seems to have deflated and I’m not AS sore after my workouts. Incredible.
But through all of this, I feel mentally and emotionally though I’m stronger than ever. Let me tell you how I did it….
First, I’ve never been one to keep my mouth shut and it’s gotten me in trouble a few times! But, I can tell you that I will never be afraid to speak up about celiac disease, gluten or anything related to it. You just make one snide comment to me and I will educate you beyond belief about my body, this disease making you fully understand what I’m going through. Or, I will just talk until that person will realize they won’t make the mistake again of saying something about celiac or gluten. You need to be able to stand up for yourself in these situations and not let others put you down or make you feel bad about our lifestyle. It is a lifestyle, it is not a diet.
Second, find a way to grieve the loss of gluten in your life. For me, I also had to grieve lactose which included my favorite food Greek yogurt and now corn. And, I love me some mexican food filled with corn so that was another problem. You feel like your life has come to and end and is ruined because you can’t eat these things, when in reality your life is just starting. Say goodbye to those foods. It took me 6 months at least to figure this out. I would see something and think “well, maybe I could just have a bite.” I never did it but I sure thought about it. The time has passed and I’m over that now. I understand those things are not food for me, they are poison. There is nothing I would love more than to have food from a food truck here in Philly, I’m looking at one right now as I write this post but it doesn’t break my heart that I can’t have them. For me, it was saying goodbye and making substitutions in my life.
Lastly, surround yourself with people who understand. I can’t emphasize this enough. Just starting this blog and finding thousands of you with the same problems creates a sense of security for me. A sense of unity about this disease. The isolation isn’t there anymore because I feel I have so many people to help me if I need it. The virtual world allows us to have more connections than we could ever imagine.
Without going through these three steps, you will continue to struggle with the challenging and emotional side effects of this disease. There won’t ever be peace of mind for you and it will constantly be a struggle. It isn’t going to be an over night change but going through the process over and over again will create a habit and retrain your thoughts and feelings about the disease.
The study results appear online and in an upcoming issue of Chronic Illness.