If you’ve followed my saga with the mistakes I made, and the mistakes that were made – getting diagnosed with celiac disease – you realize it’s been quite an ordeal.
It was enough of an ordeal, I’ve held off making a move with my kids – because I didn’t want to watch them go through what I did – and I haven’t had the energy to fight it.
We just took them off gluten, plain and simple. My husband suggested it first – and it wasn’t long before I realized, he was (again) right.
But in the process… we knew we needed to see someone skilled in GI pediatrics… someone who could look at my husband and I, and my mother’s side of the family – and look at all eight of the kids, and realize – this is pretty serious in our family. We need to do what we can to help the kids be the healthiest they can be.
But similarly to my “fight” – I’ve read where people went to 4-5 doctors, to get help for their kids.
It seems like the people who get the quickest answers, and the most help – are the doctors who are MOST aware of how broad celiac symptoms look like, and how quickly you need to move with testing.
Things like a gluten challenge are done – but under STRICT doctor supervision. It’s often cut short, if symptoms are too severe.
What I was told about a gluten challenge was 4-6 pieces of bread for 8 weeks, and then another endoscopy…. something I KNEW I wasn’t going to do myself, let alone to do my kids. [It seemed like major neglect, given all they’ve experienced.]
Well, through Facebook, I got plugged in with a page for the University of Chicago Celiac Center, and Dr. Guandalini. I was familiar with his name, due to several studies I’ve read over the past 7 months.
I watched their page for a bit – seeing what type of information they shared… and sharing some of my own personal experiences. It was because of that page that I realized my biopsy for celiac disease had been done incorrectly. The center is very proactive, hosting a blood draw/celiac panel for FREE each year to help more people realize they have celiac. They also host educational seminars for doctors, and nutritionists in December. They’re set on getting the word out on celiac, and trying to find a cure for those people who have refractory sprue, or celiac that they can’t get under control.
I became very interested in making the trip to Chicago to see if he might be able to give us insight on our family, and what things we needed to look into for the kids.
I felt like someone of his expertise would understand our concerns, and jump at the chance to see the broad spectrum of celiac, and gluten sensitivity issues.
Thankfully… HE was.
I called and spoke with his nurse, sharing some information about our genetics, and my mother’s genetics… and she said she would call back within a few days. She warned me that to get our whole family in, might be several days – as he only takes a few new patients a day.
I didn’t care. We were willing to get it right this time. No more game playing, and making our case that we were sick – when we knew what was happening.
She called back the very next day with a date for us to come in September! He had cleared a WHOLE day, JUST for us!!
I don’t usually CRY when I make doctors appointments… but when I hung up the phone… I cried. With JOY.
Thank you Lord!
I don’t know if it was the fact that I said I was HLA-DQ2 positive, and my husband was HLA-DQ8 positive… and that we had all 4 subtypes genetically, or that my mom was also genetically positive or the symptoms of the kids… But whatever it was, I’m thankful to this doctor, and we haven’t even seen him! It’s a learning hospital, so they’re seeking answers about the disease, and genetics and I would think a family (like ours) would be a dream come true to a Dr. like him.
My husband keeps reminding me – “not to get my hopes up too high”… after all, it is only one day, and he isn’t God.
I DO understand that. But, the fact that he will see us “as a family” – is a huge plus, to us. We will have his undivided attention to ask questions, and get answers for our babies.
As a mom, who has lived like this as “normal” almost her entire life, and wants more for her kids… I can’t tell you what a gift this is.
Yes – it’s quite a trip for us… but hopefully one that is well worth our investment of time – for the future health of our generations. I’ll definitely let you know how it goes next month!
“Train up a child in the way he should go; even when he is old he will not depart from it.”
Posted on September 3, 2012, in Celiac/Gluten Sensitivity, Our Struggles and tagged celiac disease, celiac specialist, chicago university celiac center, cure for celiac disease, healthy for him. Bookmark the permalink. Leave a comment.