Thursday, April 15, 2010

"Your Celiac Disease is in complete remission"

I have been diligent, never once knowingly eaten gluten. I wouldn't dare. It could kill me. I read the labels of everything I eat, I call manufactures to find out about processing practices, I grill chefs and servers at restaurants. I keep a kitchen that is not gluten free but take extreme measures to eliminate any risk of cross contamination. Recently I had a pediatric GI doc ask me about two toasters. Of course we have two toasters, are you kidding. I don't take any risks. Mine is the one with the smiley face, the gluten-free logo in our house. We have separate wooden spoons and separate strainers, food that has been contaminated is all clearly marked. I gave up an 8 week mission trip to India, a long time dream, because my physician did not feel it would be safe for me. I don't eat oat, the protein is too closely related to gluten. I believe everyone with Celiac Disease should be this vigilant. In my case, because I was diagnosed so late in life I had a gross amount of intestinal damage. It took four years for my intestine to recover. Even if I had ingested gluten over the course of the first three years of being gluten-free, I probably would not have known because I had lingering symptoms. I couldn't take a single risk if I wanted to recover. I have had an annual endoscopy, four in all, the gold standard for the diagnosis and evaluation of Celiac Disease. I remember getting the results after being gluten-free for a year, essentially unchanged, no improvement really. I was devastated.

I had my annual appointment with Dr. Murray, an internationally respected Celiac expert, this past Monday. During our conversation he asked me if I would be willing to work with the Mayo Clinic public relations folks to do a piece on Celiac Disease, to create awareness and profile an individual who has done well and copes with the demands of the disease. Dr. Murray said more than 60% of his Celiac population struggle with depression and compliance, it would be good for people to see someone who has such a positive attitude. I recalled my diagnosis, immediately after my first endoscopy, still slightly sedated. The physician who scoped me told me he was sending the biopsies but that he was diagnosing me now, based on his visual inspection. No doubt, I had Celiac Disease. I decided, right then and there, this was going to be about what I could have, not what I couldn't. I knew, going to a place of deprivation would not serve me well. Outside of not being able to take that trip to India, I have not shed a tear. I have never felt sorry for myself, I have never complained and I have never felt deprived. Of course there has been the annual disappointment of not being 100% recovered, I won't kid anyone, the slowness of recovery has been hard. And, I can't tell you what I would give to eat oat!

Trust me, a glass half full, is not my usual M.O. I tend to be more doom and gloom in nature, always considering the worst case scenario. So taking this approach was a huge change in strategy for me. I am fortunate, in so many ways. I have a brother with Celiac. I have a partner who provides unwavering support. I have friends and family who are willing to go to great length to cook safely for me. I am well educated. I have a very good job that provides an income to support my diet. I have health insurance, good health insurance. I have access to the best medical care in the country. I know how to navigate the health care system. With all of this in my favor, why would I go to a place of deprivation and depression.

I will be honest however. It isn't always easy. I don't get discouraged day to day but do worry about the long term risks associated with Celiac Disease, even treated Celiac, especially in individuals diagnosed late in life. I get frustrated every now and then, especially when I want safely fried french fries, my favorite. I like to think I have recovered from the disappointment of India but I am afraid that one will be with me for a very long time. But for the most part, I think Dr. Murray pegged me right. I am a good role model. I don't want to be the poster girl for Celiac Disease but if I can help others stay positive and healthy, I am happy to do so.


Anonymous said...

You are a model for me in many ways, Cari. You amaze and inspire me constantly. Congratulations!


GF Gidget said...

You are one of my heroes, and not just for being a model eater. I admire the way you care for others and stand up for equal rights. You are simply a wonderful person!

Ina said...

Hi, I just read this post, and can sooo relate. I was mis-diagnosed for 30 plus went off gluten myself...and like you, it took my body 3 years to heal. That part was hell...but now....having healed, learned how to cook gluten free - it is such a better world!! I too would have loved to travel to India! I have a new blog if you would like to check it out - still learning the link thing but here it is Really like your site, and have bookmarked it. thank you for sharing, Ina

Sarena Shasteen - The Non-Dairy Queen said...

I just found your blog, my grandmother and my husband have celiac. Thank you for sharing your story. My grandmother has known for years and it was much later in life. She was frustrated and basically starving since she lives alone and it seemed to complicated. My husband was diagnosed last September and since then, I have really educated myself in order to help him and my grandmother out. Through all of this, my grandmother is doing so well and her blood work is great. My husband has so much more energy and he is definitely improving. It is so nice to know there are others out there that are sharing their story. We can all learn from eat other!

Melissa Scoffield said...

I NEED HELP!! I was diagnosed 4 years ago and I am now loving that my autoimmune marker is down to 4. So I should feel fabulous. I am more miserable no than ever. My information marker is on the low end of normal. Endoscopy, colonoscopy, MRI of the GI tract are all normal. Fatigued, joint pain, neuropathy, extreme bloating, gut pain and constipation one week followed by diharea.I don't know what to do anymore.

sweetpea said...

Melissa I am sorry you are suffering so much. I don't really know what to say other than you might need to look beyond Celiac Disease to see if you have another autoimmune like disease or something else.