Thoughts and Confessions

May is Celiac Awareness  Month so I thought I would share a bit about our story with Celiac Disease.

Faith is now 11 and was diagnosed when she was 3 years old, but we began our battle when she was 18 months old. We went through many doctor visits, numerous tests were run on her at a very young age trying to figure out what was happening to our little baby.

One night she became very ill. Typically we thought she had the flu, because she was exhibiting flu like symptoms. I remember putting her to bed that evening (remember she was 18 months old) and she slept for several hours. She woke up late at night crying and was inconsolable. I kept trying to put her back to bed and she would just cry and cry. Then she began vomiting in her baby bed. Like I said we thought, okay she has the flu. The next day, she seemed fine, after throwing up all night. She was around the house playing and eating as though nothing happened. That night I put her to bed again as usually, thinking we were doing great, and approximately around the same time as the night before she woke up crying and vomiting……..this behavior continued for 3 months! Yes, that was not a typo, 3 MONTHS!!!! This was the worst 3 months of my life and probably hers. 3 months of tests, different doctors, traveling, and constantly experimenting on our little baby. The only time during those 3 months that Faith was not throwing up was when doctor’s asked us to try fasting to reset her system and then reintroduce foods. This never worked. We would fast for a few days, only having liquids and broth, as soon as food was reintroduced she began vomiting again.There was one doctor who even looked at us and said, “She may always vomit at night, it may never go away.” My only thought was, there is  no way this can continue. As you can imagine she was beginning to lose weight and she wasn’t growing as a normal 18-20 month old should be growing.

We slowly began changing her diet, but not to gluten free. At this time no one ever said anything to us about trying a gluten free diet or Celiac Disease. She slowly began getting better. I’m not real sure why, but slowly she quit vomiting every night and began feeling better. The next battle was constipation though. As we began potting training I noticed she was often constipated or had horrible diahreea several times a day.

During this period, she has her tonsils removed, probably around the age of 2. They told us when they removed them that her tonsils were rotten. Which that should have clued us in on something!

Even then at the age of 2 and beyond I felt as though something was still just not right. There were times she just didn’t feel good and I felt was really struggling. She didn’t look healthy.

I finally found a doctor, a naturalist doctor. Now our medical doctors would not say that these people were doctors, in fact I have had numerous arguments with medical doctors over us seeing naturalists doctors. The one thing that really sticks out in my mind though is that the naturalist doctors did so much more for my daughter than any medical doctor ever did. They didn’t try to medicate her or tell me she was just going to throw up and be sick for the rest of her life. No, they instantly did food testing, allergy testing, which was all done through blood work. Within a week of us seeing the naturalist doctor, we had answers. Little did we know how these answers would drastically change the rest of our lives, forever!

I will never forget the first time I walked into our local grocery store. We live in a small community, a rural area. At this time, our local grocery store didn’t carry speciality food items. Now they tend to carry a few more than they use to. Wal-Mart wasn’t really up to speed either at the time, so they were out too. I believe I spent several hours roaming through the store reading every label and trying to figure out how I was going to feed my daughter. After, an unsuccessful grocery shopping trip. I went home and began extensive research, days of research. Coming up with flour blends to use to make her pancakes, cookies, cupcakes; anything really!

Truthfully, I could go on and on with all the struggles that we have faced through the years. She has screwed up and eaten something with wheat in it a few times and has spent days in the bathroom regretting it. For the most part now though, she is very careful, all of us are. I discovered then that I am the only advocate that my child has and will ever have. We had to fight for her and still do sometimes today with our medical doctors. I am use to the weird looks I get when I tell people that I take my daughter to a naturalist doctor. I still get the question from friends and relatives, “Will she grow out of it?” They are always shocked when I tell them no. Then the next question is, “Why is this a problem now, why didn’t people have to fight this 50 or 60 years ago?” My answer is always the same, I am sure that people did fight it all those years ago, maybe the prevalence wasn’t there then like it is now, but Celiac Disease and other food allergies were in existence then. People just died, maybe not from Celiac, but maybe from complications of the disease or just lived with being sick, not ever knowing why they were sick.

Over the years I have done a lot of research on gluten intolerance and it is amazing what gluten can do to your body and the chemical make up of your body and brain. So yes, Celiac is much more prevalent now than it was 50 years ago, but we also process our foods much more than we did 50-60 years ago.

This is a topic I feel very strongly about and could keep going on and on, but I will not, not today at least! Maybe smoother time! I really just wanted to give a background as to how our journey began.