When living with Celiac Disease, so often our focus becomes our food - what we can eat and, more importantly, what we can't eat. If you're like me, it can become very exhausting very fast, feeling like all you do is think about food. It can become an obsession if you aren't careful.
When I was diagnosed in 2014 I had absolutely NO idea just what gluten was, let alone what all it could be found in. Hint - not just food! My worst symptom, as I've stated in other blog posts, is anaphylaxis (think of a reaction that someone with a peanut allergy or other severe allergy has - though mine is not an allergy, but an autoimmune disorder). In fact, I was finally diagnosed with Celiac because the last anaphylactic attack I had nearly killed me. So, newly diagnosed and researching on my own, I became terrified of food - ALL food! My sole concentration was on what I couldn't have because I didn't yet know what was actually safe for me to eat. I asked for advice from my cousin, who, along with his daughter, also has Celiac Disease and was diagnosed years before I was. His big pointer, which I didn't think helped much at the time, however, has become very important and good advice to me, was to concentrate on what I CAN have, not on what I can't. That was hard, because, like I said, in the beginning, I had no clue! I was reading everything I could find about the disease. It was often hard to distinguish the fact from fiction.
The day I was told that I might have Celiac Disease - before any testing had even been done - I went out on my lunch break from work and bought the first book I could find on it. It turned out to be a great book to be my first on the subject. The book was called, "The Gluten Free Bible" by Jax Peters Lowell, a woman who has been living with Celiac Disease for a long time - long before there was an entire growing market for "gluten free" food. This amazing woman and author told her story straight up and also included humor. She told me in her book that it's okay to mourn the loss of my former life and all of the foods I can never have again. And that is what it is, you are facing a completely unknown future and learning how to navigate a gluten free life in a world chock full of gluten. We have to give ourselves permission to mourn that which we've lost. However, she also said not to stay in that period of grief long. It is important for our well being to embrace our new existence and learn to find joy and some sense of normalcy in our new reality. Jax's book helped me so much to get over my fear and the feeling of being completely overwhelmed and oppressed by all of the information I found out there!
You see, living a gluten free life is so much more than about food! Not just because so many other things contain ingredients derived from wheat and gluten. For example, the glue on envelopes, shampoos, skin care products, make up...the list goes on and on. Things you would never imagine that would contain gluten. The further I read into "The Gluten Free Bible" and then a few months later when Jennifer Esposito's book, "Jennifer's Way; My Journey With Celiac Disease - What Doctor's Don't Tell You and How You Can Learn to Live Again" came out - the more I realized that there are many other factors besides food in getting and staying healthy. Yes, a gluten free diet is vital. If you have been diagnosed with Celiac Disease you can not ingest gluten - ever! You will cause damage to the villi in your intestines and that can lead to a plethora of other health conditions, including cancer. And the best way to be gluten free is to stick with naturally gluten free, unprocessed or minimally processed foods. The fewer the ingredients, the better. You also want to stay away from unpronounceable ingredients and preservatives. This last part is still something I am working on in my own life - and I admit, it is not always easy, but it is the healthiest way to be gluten free. Sadly, there is a lot of unhealthy "gluten free" foods out there.
To truly take care of yourself, you need to be sure you get plenty of sleep each night, drink lots of water, keep stress to a minimum - so many things that are vital to everyone, not just people with an autoimmune disease. Time and time again in the past almost 5 years I come back to my cousin, Kelly's advice to concentrate on what I can have. What I CAN have is a positive attitude. I CAN have fun - I don't have to let my disease take away my ability to enjoy life, even if it may make it more difficult to do so at times. I CAN keep my faith in God strong - especially in those times when I am not. I CAN help others learn more about Celiac Disease. I CAN show kindness and compassion to others who are walking a difficult road no matter what that road may be. I CAN still be me! I am not my disease. I have Celiac Disease, I am not the sum of my illness. I am still Margo. I still love photography, writing, painting, reading, snuggling with my kitties, laughing with and loving my husband, family and friends, serving in multiple ways at my church and in my community.
I'm here to tell you that there IS life after a Celiac diagnosis. It's not an easy or short road to health, you may even feel worse before you begin to feel better, but the attitude you have will make a huge difference. In my case, I've been extremely blessed to have a lot of supportive family, friends, church family and co-workers who've been there with me and for me through all of this. I know that not everyone has that kind of support. I am here for you! One way I found to live my life again and find my "new normal" was to start writing this blog, start a Facebook page and Instagram account to reach and support as many people living with Celiac as possible. One of the very best ways to help a person get through the difficult, overwhelming and frightening circumstances they may find themselves in is to reach out to help others. Even in a small way. Let what you are going through open your heart to someone else who is also going through a hard time. You'll find that even in your less than ideal circumstances you can be a light, a support, an encouragement to someone else. In that, you will find beauty in your "new normal".
For more information about Jax Peters Lowell, click here.
To follow Jennifer Esposito on Facebook, click here.
Click on the link to listen to Jennifer's new podcast called Chew On This
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