Skip to main content

To be celiac or not to be.....

Although Jacques' serology tests (blood tests) all came back negative, his gene test for celiac disease came back positive. Therefore there still is a chance he could have celiac disease.

The only way to confirm the diagnosis of celiac disease is to do a small bowel biopsy.

I have mixed feelings about the possibility of him having this disease. On the one hand (the positive side) celiac disease is very treatable, remove all gluten from his diet for the rest of his life, it is also less serious than some of the other diseases and illnesses the doctors suspect at this stage.

On the other hand (the less positive side) removing all gluten will mean a huge adjustment and lifestyle change.  Not only for Jacques, but our whole family. Seeing as even trace amounts of gluten can be poisonous to people with celiac disease, our whole family will have to go gluten free. Now for those who don't know, gluten is found in wheat, barley and rye, thus about everything!

I think I'll still prefer celiac disease above alternatives like osteogenesis imperfecta or mitochondrial disease (the 2 other highly suspected disorders).

Of course ideally I'd prefer none of the above - to have a healthy little boy without any of these possible health problems but we accept the challenges with as much grace as we can muster and trust that God only sends things on our path that we can handle (with His unwavering help) and that will ultimately make us stronger.

Comments

Popular posts from this blog

Our greatest fears came true for a friend of mine.

The third angel I had the privilege of knowing has passed away. And my heart breaks for all of the parents of the kids taken away so young. This is a pain I am not yet familiar with, but it is the pain I know that will hurt the most. This is the pain many special needs family's fear more than any diagnosis or treatment. The pain of saying goodbye to the person who formed you more than anything or anyone else ever could. And this special person formed the whole family dynamic. Everything revolved around their care. Vacations were planned around their needs. Their parents were absent for a lot of their siblings life. I fear for the time, just after the loved one will be taken, what will the sibling/s feel? How will they react? How will we react? I know there will be sadness, but what other emotions will be lurking around? Anger? Resentment? Maybe even a sense of relief? How will we deal with that? I think it's important to start dealing with these emotions wh...

Hobbies - sanity saving stuff!

 I haven't written anything in a while. Mostly because I've been keeping myself busy, quite productively I must say. I started a whatsapp group more than a year ago, where I sell items I find at thrift stores. I hit an emotional bump in the beginning of the year and stopped the group for a few months. After some self reflection, I started the group again, and it's been keeping me occupied. And thus away from sinking into depression again. Depression as a result of PTSD from special needs parenting. But I have posted about this before, and this post is about positivity and hope. So I won't be going into depressing subjects today. My whatsapp group's name is Interestingfinds. And that's exactly what I sell on the group. Treasures I find in thriftstores and similar stores. I also have a bidorbuy account where I sell similar items. But the whatsapp group has been really therapeutic. I get to interact with other people (electronically) and I have made quite a few fr...

Footprints of a giant.

Isn't life strange? When I was a child I had a very close relationship with my father. He was my hero, I looked up to him and I have him to thank for my love for music. His passion for classical (and church) music was my inspiration and the reason I learned to play the piano. My mother was the reason I continued with the piano lessons. Her encouragement when I wanted to give up is what pushed me towards becoming a moderately talented pianist. I have come to realize, in the almost two years since her death, that my mother was my real inspiration in life. And thankfully she still is. When I am sad and discouraged, it is her voice I hear. I can hear it clearly in my mind, encouraging me not to give up, and then I feel her presence so very clearly next to me. And with her ever present nearness I have nothing to fear or be sad about. These last few years have been an eye opening experience. Ever since my mom's passing I have been struggling with my spiritual life. I h...