Tuesday, September 13, 2011

Celiac Disease

Lane Michael's blood test came back (regarding celiac disease) and once again his markers are higher...we have an appointment on the 26th with GI at 3:15...she wants to look at growth, stomach issues (pain, constipation etc) and discuss his next biopsy and get that set up. The first year we faced this I was a nervous wreck, I didn't know how we'd make this life change, I didn't know what to feed him or how to take him to other people's house's, I cried, and I mourned, I know this disease isn't the end of the world...but it sure felt like it. The second year, I was ready, I thought we'd surely get a diagnosis, I just knew I could take this on, I could make this change and make it good. This would be ok. This year, I don't know how to feel. I don't want this. I've been thinking of all the changes we'll have to make. The foods we'll have to give up. All his favorite foods, like pancakes, donuts, spaghetti, lo mein...Lane Michael could live off lo mein. I'm sad again. I'm not ok with this. What would we feed him on vacations? Who could I trust to care for him in an emergency? Todd is saying that the change is too expensive for everyone to make, that we can get gluten free for him and gluten for us...that's not fair to him. I don't want him to be more different than he already is. I will pray.


Anonymous said...

Just wanted to let you know that Lane Michael will live a wonderful life gluten-free. It does not need to be expensive - get the shopping guide from Triumph Dining or Cecilia's Marketplace, shop the peripherals of the grocery store, and join a local celiac disease support group. Our child is adopted and has celiac disease. Our family has been living the gluten-free lifestyle for three years. It wasn't easy in the beginning and there's always new challenges - day care, school, class parties and celebrations, birthdays, family gatherings, travel, and airplane food and airports. Keep networking with others and it will get easier. Your son Lane Michael will quickly learn to self-advocate and his friends will also start advocating on his behalf as well.