Celiac · gluten free · Marie

Joining the Celiac’s Parent Club

We’ve known for a few months now that it was highly likely Marie has some kind of food allergy or related issue. After we moved back to the States and finally got her off of the puree pouches (so convenient while flying across the world!) and onto solids, she developed eczema. Her diapers remained (TMI!) mushy and so couldn’t begin potty training despite intense interest in trying. She is super thin despite constantly wanting to eat, and eating like a teenage boy. My dad has Hashimoto’s so with that history and the symptoms I decided that as soon as she turned two and could be tested for the myriad of possibilities that we were going to do it.

I had to fight to get the referral to a pediatric gastroenterology specialist because Marie didn’t weigh little enough to send up the red flags for nutritional issues, and nobody in the medical community seems to like to believe things like food issues could be the reason she has eczema. And because her diapers were still only dirty about once a day like normal and didn’t qualify as diarrhea there wasn’t any reason to be concerned according to her pediatrician who apparently wrote me off as an over-Googled hypochondriac living vicariously through my children’s potential medical issues since I had just been in for the referral for Anya’s (now diagnosed!) Asperger’s screening a few months before. Mommas just know when something isn’t right with their babies, and there’s no law of the universe that limits lifelong conditions to one child per household.

The specialist wasn’t overly concerned but recommended we have Marie blood tested for a myriad of things with the family history and his own experience with his children’s food allergies. So we went to the lab where they drew seven vials (!!!) of blood. Marie cried when the needle went in and then watched the rest of the procedure with rapt interest because…Marie. Fearless, that child. We got the results less than a week later, and all the tests came back normal except the one for Celiac’s Disease. She has a very high positive. They recommended getting an endoscopy to confirm before committing her to a life of being gluten free because once it was out of her system the tests would no longer be reliable without going back on gluten for several months.

And so – despite being terrified to have my two year-old put under for the procedure – we scheduled the endoscopy. The nurses were amazing. They didn’t make Marie change into a gown. They let her watch Daniel Tiger on one of their phones and warm up to them so that when it was time for her to go back one of them carried her instead of a worried me that would cause her to think there was a reason to be in distress. Which was hard. I won’t lie. But the anesthesiologist spoke to us beforehand as did the specialist who was doing the procedure (the same one we’d seen for the testing referral). They put her under with a mask – no IV – and of the fifteen minutes she was in the procedure only two of them involved the endoscopy and biopsies needed. The rest was letting her go to sleep and wake up. They said she never cried. She started to fall asleep still held by the nurse and woke up almost immediately after the procedure. She was a star patient. (Of course she was. <3) We were able to go home ten minutes later, and she was perfectly normal the rest of the day with none of the side effects they told me she might exhibit. That girl is made of something stronger, I'll tell ya.

Within a couple of days I got the call. Marie has confirmed Celiac’s. She will need to be 100% gluten free for the rest of her life. And thus began the removing of all gluten from our household. This is the moment where I found out that being that mom everyone rolls their eyes at for being passionate about keeping the food, hygiene items, and cleaning products that my family uses as organic and chemical free as possible has paid off since we don’t have to change shampoos or toothpastes, and my house has been cleaned, dishes washed, and laundry done with a product line of green cleaners that are one of the few gluten free options. Yes, typical name and store brands of many every day items have gluten as an added ingredient on top of oh so many other things I already stopped buying them several years ago to avoid. I am so thankful that eating out less and ridding our home of what few wheat products we did eat is about the extent of the changes Marie has to go through to live healthily gluten free. A majority of our other food products happen to already be gluten free by nature of being as artificial junk free as possible in the first place. God had a plan. I believe that sure as anything.

The rest of us now need to be tested, and because cross contamination is so easy to have happen we have decided to make our home completely gluten free for all of us regardless. Home is the one place Marie should be safe from something that (once her system has cleaned out all of the gluten in a few weeks) will make her violently ill. So now this blog has another whole level of interesting topics to cover as we navigate becoming a gluten free household with a child who has Celiac’s and everything that goes with that.

First Anya with Asperger’s. Now Marie with Celiac’s. Saying a little prayer that maybe baby Benjamin will avoid any lifelong conditions, but I know that no matter what God has a plan for each of my littles and for me as their mother. He knew exactly what He was doing and what we all would need to figure this out together. I can do all things through Christ. If I have no other certainty, there is that.

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