Thursday, May 17, 2012

Tummy Aches

My sweet Amelia has been complaining about having awful tummy aches.  She's been spending a lot of time in the bathroom lately and crying herself to sleep.  Any guesses as to what might be going on with her? 
Ya ya.  I know. 

I called the doctor to get the blood work done to screen for Celiac.  I was hoping to get a quick result so I had her pediatrician run the bloodwork and planned on making an appointment with our GI doctor if necessary afterward.  Funny thing is, that although I have loved my pediatrician, I was not impressed with how things happened.  I called to follow up with them a week later and got a bit of a run around then a nurse got on the phone and said that it was Celiac and that was it.  I thought that was odd that they would just assume it from the blood work only and not refer to have a stomach biopsy done like we did with Brittany when she was diagnosed.  I also found it odd that the doctor wasn't the one giving me this life changing information.  I have to assume they are perhaps not aware of just how life changing it will be to put a 6yr old on a gluten free diet.  Lucky for them it wasn't my first time at the rodeo. 

Moving on, I called our GI doctor and explained that her blood work results were 3 times above the normal level.  Of course he brought us in for a office visit and scheduled the stomach biopsy.  He did say that if a patient is symptomatic and blood work is positive that a biopsy isn't always necessary.  I felt the need to be 100 percent certain before sentencing another one of my children to a life of eating gluten free.  And perhaps I have other concerns stemming from the fact that my son has had positive blood work for Celiac, however his biopsy was negative.  So I wanted to be sure about this. 

I had Amelia eat extra bread and gluten filled items every day leading up to the day of the biopsy.  One night she went to a birthday party and ate pizza, bread sticks and cupcakes then cried herself to sleep because of the pain in her stomach.  It was evident that we were headed for positive biopsy.  She was so miserable that it didn't seem to phase her that she was about to be giving up so many of the foods she loves.  The only thing she mentioned that she would be sad about not having was donuts.  Her bff brought her one last donut the night before her biopsy.  Turned out to be the last donut she would enjoy. 

Right after the doctor performed her biopsy he spoke with me and my husband and said that her stomach looked "very angry".  He recommended that she start on a gluten free diet immediately after seeing the damage to the inside of her stomach.  He even offered to give her the pain medicine that they give kids with Chron's because it was so severe.  We left the hospital and stopped at Chikfila for lunch.  Thank goodness for their new gluten free nuggets! 

And so begins Amelia's gluten free journey.  In a weird way, even Brittany acknowledged that she no longer felt alone in this battle.  At least they have each other to lean on for support.  But the first week brought on many melt downs as Amelia realized for herself that she could no longer have certain foods.  These are the moments that rip a mother's heart out because there is nothing I can do.  There is no cure for Celiac. The only treatment is to eat gluten free.  I hoped that as her stomach healed, she would understand this better. 

She still had tummy aches for the first week or so with many trips to the bathroom with the big 'D'.  But all of that has gotten better.  We prepared a snack bucket of gluten free treats for school since her 1st grade class has snack time each day.  I spoke with her school teacher and gave her information about Celiac as well as a list of acceptable gluten free foods.  (I find that people are always happy to know what they CAN give my child, rather than just what not to give them). 

We are lucky to be able to have a gluten free hot lunch made for her and met with the lunch staff to set things up.  She has to plan which days she will take hot lunch a month in advance so they can shop and have her food prepared.  The staff has been trained on cross contamination, and by coincidence the lunchroom manager is currently being tested for Celiac.  That isn't good news for her, but it made me feel reassured that perhaps they would be even more aware of the need to keep her food separate and change their gloves. 

I am sad for Amelia, but also grateful to have the knowledge that we do about how to eat gluten free.  At least we know what is wrong and how to deal with it.  So now I have two adorable reasons why I blog gluten free.  It's our life and we are learning to deal with it just fine!

Local News - Utah Man Lawsuit Against Sen. Hatch Over Gluten-Free

This story aired on the evening news tonight.  This man is pushing for better labeling laws concerning gluten free foods.  His family started a gluten free bakery here in Salt Lake City.  Great information given in this short news clip about Celiac Disease.