Monday, June 14, 2010

We Have An Answer!

I know it has been a long while since I last posted.  Much has happened since then.  For now, I will just talk about the medical portion of the past few months.

The pediatric endocrinologist the kids had been seeing finally said that she wanted Hannah and Joshua to start growth hormones in September.  My response was that I would look elsewhere since I didn't care for that answer.  It just so happened that I was going in for an appointment for myself when Hannah started to swell and was obviously having an allergic reaction.  So they got her into see a pediatrician that finally helped us.  We still aren't sure why she swelled up but she does have an epi pen now.  From there we made another appointment to see him and at that appointment we brought in our paperwork from the other doctors, explained everything about Joshua and Hannah, told him what we thought (it has to be Celiac or something with the pituitary).  He listened to what we had to say and from there ran tests on both Joshua and Hannah to check several things.  Both Joshua and Hannah showed they had inflammation but couldn't specify where and that both of them had malnutrition.  Hannah's tests were a little worse then Joshua's but not by much.  Both were tested for Celiac but only Joshua's results came back and it was negative (it can be wrong 20% of the time) and Hannah's was never done at all.  Allergy testing was also done and found out Hannah is allergic to mesquite and cashews.  I asked the pediatrician if we could see a pediatric gastroenterologist and he agreed.

The pediatric gastroenterologist we saw in Oklahoma City listened to the same thing we had told our pediatrician.  After going through everything about Joshua, he told me the same thing the other pediatric gastroenterologist had said two years prior, that it was all in his head.  I was furious at this point.  How can you think all of his issues are in his head?  How can his bones not grow?  Is that all in his head too?  Well, we moved onto Hannah and he thought there was something there.  I am still confused as their test results were basically the same.  Anyways, Hannah had blood work done to check for Celiac and only part of her test came back positive so an endoscopy was scheduled.  We got the pictures back and her esophegus and stomach looked brown and wrinkled with bile.

Today the nurse called to tell me that she has esophegitis, gastritis and Celiac disease!  A weight was lifted off of my shoulders.  That my 'gut' instinct as a mother was right, that there is now an answer and we can move on from here.  Hannah has to be on a gluten-free diet for life.  That is the only way to live for those with Celiac.  She is to be put on Axid for the esophegitis and gastritis to help with that.  That should only be for about two months.  

I am waiting to hear back from the doctor to see if he wants to scope Joshua.  He said he would if Hannah came back that she had Celiac.  My husband feels that we do not need to scope, he is tired of us waiting on doctors.  He just wants us to put him on a gluten-free diet also now and not wait.  I go back and forth.  It is hard because I don't want my children to have these procedures but a part of me wants to give them medical proof that it isn't just in his head.

In the meantime, there has been so much research that has been done to learn what I can about Celiac.  It is almost overwhelming.  My husband and I decided a few weeks ago that no matter what the test results would be that we were going to go gluten-free anyways to see what results if any it would have on the children and myself (I have had issues and the doctor believes gluten and dairy may be my problem even though my test came back negative).  We are learning that the test can be wrong 10-20% of the time and that people can still have a gluten sensitivity even if they don't have Celiac.

Celiac is genetic, so others in the family should be tested.  Some people have no symptoms at all.  If you would like to know more and would like to know who can be helped by going on a gluten-free diet please do your own research.  You can visit Gluten Free Girl and visit the many links she has listed.

I just look back at the past few years and can see how standing up and being an advocate for my children has gotten us to where we are.  I know that there are people who go years before being diagnosed.  It took us awhile.  I look back now and see that all the times she spit up formula, her stomach sticking out like she was a child from a third world country, the stinky diapers, the bottomless pit we called her stomach, her constant diaper rashes that were yeast infections, etc were just signs.  No matter how many times I told a doctor, they would just look at me like I was an over protective mother.  All the research I had done, the only things that every came back in the searches was Celiac or something with the thyroid and pituitary.

Now it continues with Joshua and Josiah, who we believe has it too.  So learn as we learn.  Share with us if you know anything.  Our gluten-free journey begins and it will only get better from here.  We look forward to the progress the kids will make, with as few drug interventions as possible!


  1. I think Abbi has a gluten allergy as well, though it is a challenge to get her to eat gluten free. We are going to try. I'm definitely inspired by your story, and got GOOSEBUMPS when I read that you found an answer! I know how long you have been looking for one, and how hard you have fought for your kiddos. You are an amazing mom, and now because of your diligence, they're going to be okay. :) Good job, Nikki. :) You should be proud of yourself. Sending you and your kiddos big big hugs! ~Kristin

  2. I am so glad you got some answers! It can be exhausting as a parent to advocate for your child(ren) when medical professionals look at you like you are crazy. I hope you notice a change quickly as you switch to gluten-free. Praise God for answers, I know He will continue to lead your family well.