Celiac Journey

February 25th 2015
It started off like any normal day.  Kids got up and ready for school, Henry and I went to play group we came home and ate our lunch and he went down for his nap.  I hopped on the computer to do my thing and then the phone rang with unexpected news.  The week before i took Kate into the doctor to see if she knew why she was having tummy issues. This has been a on going issue for months and when we had conferences she mentioned that Kate asked to go to the nurse everyday.  I was beginning to think she had anxiety issues. The doctor ran a bunch of lab test to check for gallbladder, thyroid, diabetes, uti, etc. etc. and those items came back normal. She must have ran a few more things that i didn't know of and that is when the phone call came to me. "Kate is positive for celiac disease." I guess i didn't suspect it.  It hit me hard and i was like what? Being the person i am i started googling what all that meant. It totally explained and tied all the issues we have been having with her. It also scared me because of the higher chance of cancer, and infertility issues that seem to go along with it.  As a parent you never want to see your kids suffer and be at risk for scary stuff.

Kate has add, anxiety, mood swings, irrational anger, bruising, eczema, occasional hives, dark circles around eyes, skin rashes, diarrhea, constipation, stomach pain, gas that is toxic, bloating occasional back pain, chills &and fevers, weight loss, and night sweats, more.

As i was reading these i felt like a horrible mom. How come i didn't see that there was something bigger going on. I thought she was having anxiety and there was something she needed to talk though that she wasn't. I even requested she go see a psychologist. I now have to cancel that request. So many signs but the lack of knowledge about this disease made me so clueless. I remember hearing Elizabeth Hasselback talk her being a celiac but never really paid much attention to it. 

In case your wondering what it is.....

Celiac disease is a autoimmune disorder that is genetic!  So when you eat gluten (wheat, rye, and barley) it is attacking your villi in your small intestines, and when they are damaged your body is not able to properly absorb the nutrients from your food.

This is not a fad diet that you choose, this is not a food sensitivity, this is a serious disorder that seriously hurts her. As i talk to people about this they tell me about so and so is gluten sensitive and she is just like your daughter. No i am sorry that is not the same. Or they tell me she grow out of it, nope wrong again!  I tell them about how she can have food cooked in or around food that is being prepared with gluten in it and they think i am talking crazy. Yes food that is cross contaminated is just as powerful as eating gluten.  I think joining a support group is on my list you feel overwhelmed and alone because i personally don't know anyone that has this, and they wouldn't think i was crazy.

Our doctor has sent us to gastroenterology. They wanted her to continue eating her diet she has been all this time because they wanted to do a upper endiposy on her and look at her small intestine for a second confirmation of celiac damage.  They were able to schedule her in a day after we got back from disney world. It's amazing how fast they were able to move with this. I heard so many stories on how long people had to wait to get in to see the speciality dr and have there procedure done.  

The 16th had come and it was time for her to go and have her procedure done and see if they are able to see damage and for the dr to take a biopsy of the small intestine.   She wasn't nervous and the nurses explained everything well for kate to understand. They even gave her choice of her sleepy med. flavor. Kate picked bubble gum scent!!!! She also had a wiggly tooth and they didn't want it to fall out with the scoping so they removed it when she was asleep. Win Win for me since i hate teeth removal. The procedure went well she was in and out within 30 min. and woke up good with no puking. The doctor wasn't sure before the surgery if he would be able to tell us right away if there were signs of damage to the villi and that we might have to wait for the biopsy results. But when he briefed us after he said there was visual evidence of the damage. They were able to show us with a pictures of what they were looking at.  Technology is amazing.  So now we are on a gluten free diet for life to repair the damage and keep her healthy. It will repair itself as long as she stays away from gluten. She has to return to see the dr in 6 months for blood work testing and make sure her numbers are going down. He also said celiac people are also prone to being lactose too. He said start with gluten free and after time is she is having trouble still consider doing lactose free also. 

The best part is Kate is doing great to the change of gluten free food. It's like her body knows it better for her. She hasn't complained and has loved everything GF we have tried. Unfortunately Bella is not doing good to GF foods. I am not cooking 2 separate meals for dinner and she hates everything GF. It's going to be a change and i'm hoping after time she will be more supportive of the change we are doing for her sister. 

top left show the bubbly like texture that is the damage from gluten in her small intestine. It should be smooth

the bottom part of the picture is a big raised inflammation and that is a classic image of celiac the dr said

kate getting her surgery pi's on

playing in the waiting room

mr potato fun before the surgery. Kate said she dreamed about a potato when she woke up, it must be Mr. Potato

her missing tooth

post surgery smiles

she picked the wheel chair to leave. She also had the choice of wagon, or carried by dad.

Knowing is half the battle, and now this mama is going to be learning to cook with new restrictions and i hoping  along the way i am able to help others, weather it's to educate or support. God has a plan for everything and he doesn't lead us to something without a reason.