It’s Story Time Day #1 Elyie’s Story

Happy Celiac Awareness Month!  Thank you so much for joining us.  I have a fun series planned of It's Story Time!  Gluten Free Stories from people all over the United States!  Everyone who is gluten free has a story.  It is so amazing to me how everyone's story is so different, yet in the end, all the same.  If you are gluten free, please consider sharing your story.  I am still taking them in.  You can email me or fill out the contact me form with your story typed in. 

Meet Elyie.  My sweet girl.  She is such an inspiration to me, how she lives gluten free.  She is amazing! 

It all started shortly after Elyie was diagnosed with having Langerhan's Cell  Histiocytosis.  She was 4 1/2 when she had a tumor present on her head.  The tumor had eaten through her bone and was sitting on the dura (the space protecting the brain).  She had neuro surgery done to remove the tumor.  Thankfully she only had the one, which meant she had single site, boney lesion.  This meant that the surgery to remove it should be enough to keep it from returning.  We still have to watch as the disease can return without notice.  Many children who have this must be on chemotherapy and radiation.  They treat it much like a cancer.

The Histio scare was all in February of 2006.  In the summer sometime of 2006, she started having stomach aches often.  She would complain of pain right at her belly button.  Our pediatrician started her on Zantac thinking she may have reflux.  After several months of no improvement, we changed her medication from Zantac to Prevacid.  This would give her some relief at times, but other times, no relief.  It got worse.   Stomach aches became more frequent and the medication did not seem to be working. 

We were referred to a Gastroenterologist in the summer of 2007.  Even with the pain where it was, he agreed with my pediatrician that we were dealing with reflux.  He put her on Periactin, increased her dose of Prevacid and added in Carafate.  We continued this combination for about 9 months or so.  Then it happened.  Diarrhea.  It wasn't after every meal, but randomly, she would have a severe stomach ache then a very bad bout of diarrhea.  It only continued to get worse until she was having diarrhea after every meal.  By June 2008, I couldn't take it anymore.  I couldn't believe I had let it go on as long as I had.  With my RN background, I knew what we were dealing with was not reflux.  If you are familiar with this at all, you know that it is a burning sensation from the stomach upward into the esophagus and throat.  This was not what we were dealing with.  Reflux does not give you diarrhea and severe stomach aches. 

So, I made an appointment with our Pediatric GI doctor.  I already knew what I wanted.  I wanted more tests.  I wanted her to come off all the medications she was taking 3-4 times a day.  We had our appointment and I basically told them that I wasn't comfortable with leaving until we had a plan to find out what was causing her diarrhea.  He immediately told me that we could do a stool sample and some blood work.  With the blood work, he would be checking for Celiac Disease.  I said, "Let's do it, if this is where we need to start, then we need to start today!" 

Three days later I got the call from the GI doctor himself.  He was very nice and caring, concerned.  The celiac blood test had come back positive.  This meant that it was pretty likely that she did have Celiac Disease, but he wanted to do an endoscopy to confirm the diagnosis.  Sadly, this was June and the endoscopy could not be scheduled until August 1.  We had to continue to feed her gluten for a month and a half, almost 2 months, watching her in pain.  It was awful.  I wish I would have known then what I know now.  I would have done things a little different. 

The endoscopy confirmed the Celiac Diagnosis.  Her villi were flat.  This began our gluten free journey.   It was not easy at first.  It was hard to break old habits.  It was hard to leave behind favorite foods, convenience foods.  It did not take too long for us to get the hang of it.  It was very important to me for her to feel "normal".  For her to have foods that she was used to having.  We immediately started learning how to make cookies, cakes, pancakes, muffins.  Our favorite foods.  It has been amazing to me to see the difference in what was available then, and what is available now.  Such a difference in only 3 1/2 years!

We started this blog in October of 2010.  I say "we" because little one reminds me all the time that there would not be a "Gluten Free Birmingham"  if it wasn't for her.  She is right.  I hope you enjoy each person's gluten free story through this series.  If you feel inspired to share your story, please do! 

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