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Recently we were told that our youngest child has Celiac's disease. This is her story.
When our little one was 6 weeks old we had to call 911 because she choked and stopped breathing. An ambulance came and took us to the hospital where she stayed for four days. Ever possible test was done from a spinal tap, to a brain scan to find out what happened to her. The answer we were given was that she suffered from G.E.R.D (gastrointestinal reflux disease), and most likely spit up and then breathed it in, thus choking her and ending in our ambulance ride.
For the next 3 years, she vomited daily. We continued to see doctors and specialists who told us that she had a milk allergy as well as reflux. She was on various medicines and we avoided dairy hoping it would help her feel better. Typically kids out grow reflux symptoms by the time they are 2 years old, our child did not. Her entire life she has not slept one good night, not had one day without a tearful meltdown, and had numerous vomiting events each day. We knew something was not right with our baby.
Two weeks ago we took her to a children's hospital to get an endoscopy done to see what was going on. She was put under anesthesia and biopsies of her esophagus and small intestine were taken. After the procedure the doctor told us that he didn't see anything with the scope, but that we would have to wait and see what the biopsy results showed.
Five days ago the phone call came. The doctor sounded funny from the first moments of the conversation. He told me that he was very surprised to find out that she tested positive for Celiac's disease. He explained that this is an autoimmune disease. When a person with this disease eats a food with gluten the body attacks itself, specifically in the small intestine. ( click here for more specific information) Gluten is in all wheat, barley and rye ingredients. We would have to provide a gluten free diet for her and she would need to be on it for life, this is a disease that never goes away.
My first reaction was shock and sadness. I knew that her life would always be a little different from her peers. She is only 3 now and we can totally control her environment to keep it safe for her. When she enters school, goes to friends houses, goes to parties or is just faced with her own choice things would be more difficult. I felt a sense of grief for the things she would never know and for the changes that we would all have to make. I was overwhelmed and angry. Not to mention so frustrated thinking that we were poisoning her little body for 3 years and had no idea.
We have been pretty busy these past 5 days. Our whole way of living has changed. My views on food and family organization have had a monkey wrench thrown into them. We have gone completely gluten free as a family because we realized that it would be too difficult to keep all the food, dishes, cookware and kitchen safe for her if there were glutenous products around. So, we scrubbed and purged the kitchen to make way for our new food, our safe food.
I made a loaf of bread today that was made without gluten. It didn't taste the same as our old homemade breads, but it was pretty good. I gave it to the kids with homemade peanut butter and jam and they all ate it no questions asked. My husband made homemade gluten free pancakes for the kids and those too have been pleasing to the team. Dare I say that I think we are going to be okay? Stay tuned, once I get totally together I plan on having a page of recipes and important websites for those of you who need the information too.
I am in a place now where I feel so blessed to know what has been going on with our little girl. No matter what changes we have to make, we are all willing to do them so she finally gets well. The doctor told us it is going to take some time until she heals and starts to feel better. It is sort of crazy to think that she has not had one single day in her life where she felt good. I can't wait to see the child she is when that day comes. I hope she will be happy, tear free and filled with energy from a good nights sleep. I pray that through homemade, gluten free food, she will be healthy and enjoy her little life!
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