The Story.

I have eluded to it on facebook, but it's an awkward conversation to have. When people ask me "what's new", where do I begin? It has been a long, long journey, and it's one many people don't really know the details about. So when I tell them Tobes has Celiac Disease, it's often met with blank stares, or comments like "how did you even think to check for that??" He never seemed "sick" or was hospitalized, his symptoms weren't easy to see, or readily talked about.

I am writing this post for 2 reasons: I am writing to answer the questions from people I know who are surprised by the news. I am also writing because it was the personal experience of others (both in-person and expressed on blogs) that helped me connect the dots for Tobes. I am not saying that everyone should be tested for Celiac Disease, I'm not saying everyone has Celiac Disease, but maybe someone else out there will read Tobes' story, and maybe it will connect some dots for them.

It mostly started just over a year ago, though looking back there were signs long before that. Tobes always had a bloaty belly, ever since he was a baby. It was chub to begin with, but at some point that chub turned into bloat. It came out from below his ribs, and it's size varied day-to-day. He was gassy, he was colicky, but so was his sister. She grew out of it, he didn't exactly. He was never an excellent sleeper, but neither was Princess. As they say, hindsight is 20/20.

Just over a year ago, Princess started school, and while I assumed that the routine would help with a nap schedule and rest, Tobes just wasn't sleeping. He had bags under his eyes, and that lack of sleep permeated everything. He was irritable, clingy, and sad. When he did get rest, it was riddled with night terrors and nightmares, sometimes 7-8 times a night. Words cannot describe the feeling of having my little boy in my arms, stuck in a twilight, unable to wake up or fall back into deeper sleep, and screaming and crying all the while. Sometimes it was downright scary. There was a lot of crying. From all of us. We were impatient, irritable, and we just hoped he would grow out of it eventually.

It was by chance that I found a pamphlet in my office at work for mental health support services for young children. I filled out the 7-page intake, participated in a half-hour phone interview, and got an appointment for him. Through that we learned awesome coping techniques for him and better ways to parent our exhausted, anxious toddler. Tobes had separation anxiety that was made worse when Princess started school (they had never been apart otherwise) but through bloodwork we also learned he was severely iron-deficient, which was causing to Restless Leg Syndrome, which was thought to be related to the night-terrors. He was started on iron, and between that and the coping techniques, we were on an upswing. He started to sleep longer stretches, and he was happier more often. His tantrums and meltdowns lessened in frequency, and they started to get easier to manage.

This fall, however, things started to fall apart again. His iron levels weren't coming up the way they were expected to, his sleep was regressing again, and the GI side-effects of the iron medication reared their ugly head (despite the first 4 months of the supplements going along just fine). He stopped eating as well, and started to complain about tummy aches. He was hungry all the time, but after 2-3 bites, he was "full". And if we pressed him to eat more, he was often sick to the point of vomiting after.

All this time, I had been researching and reading and gathering information. I read about different causes of iron deficiencies in small children, I read about RLS, nightterrors, and about mental health in toddlers and preschoolers. At the start of this whole process, I had also talked to the friends I knew who had gone GF without a diagnosis, but in hopes it would help their children with behavioral or other issues (and it did for many of them). I read up on Celiac disease, along with a myriad of other things, and some boxes started to tick that I couldn't ignore. His iron deficiency, belly bloat, anxiety, and even his weakened tooth enamel (which we just assumed was genetic and from me) were on list after list of symptoms.

Tobes' doctor wanted to explore the iron issue deeper, and I asked if he could add on the "Celiac blood test" while we were at it. He was skeptical, asked a bunch of questions, and finally relented. He had never seen the worst of the bloat. He didn't understand the depth of the sleep issues. But he added it to the req and we got him tested.

I got the call mid-October to come in for the results. My doctor was dumfounded. Tobes' results for the test were astronomically high (in the THOUSANDS, where a positive is considered anything greater than ten), and we were given a referral to the pediatric clinic at the local children's hospital. It was the end of October when we saw the pediatric GI specialist, who was almost prepared to diagnose Tobes based on the initial bloodwork alone (the Celiac blood test is not the sole diagnostic test for the disease in Canada, but the chances of him having a false negative with that high a number were apparently incredibly low). The rest of the tests were done and it's confirmed, Tobes has Celiac disease.

We are now just over 2 weeks of him being gluten-free, and the rest of us have been tested for it as well (waiting on results). It hasn't been easy, but that is for another post. It will be worth it. Celiac disease is an autoimmune disorder. He is battling with potentially 3 years of intestinal damage - every molecule of gluten Tobes has consumed has caused his body to attack his gut. It will potentially take years for the damage to be repaired, but it will be repaired. But in just the last 2 weeks, Tobes has started to transform. We have been prepared for the withdrawal symptoms many have warned us about, but his cheeks have pinked up (my translucent toddler had colour), he generally handles change and transition better, his sleep has overall started to improve again, and the GI issues that plagued him seem to be a thing of the past (he has been off medication for that since 2 days after he went GF). It will be a lifelong journey for him, but we are starting the first few steps.

An Update

Hi everyone! I'm not sure how, but 4 months have passed since I last updated!! Many, MANY things have happened since then... We took an awesome family vacation out to the west coast, Princess started grade 1, she won another big trophy in Calgary for dance (and we head to Vancouver in just under a week for another competition!), and Tobes is back to doing gymnastics, and just started Irish Dance too (and giving both his coach and his dance teacher a run for their money!)

Biggest news though is the result of over a year of private struggle. Through many doctors and specialists and appointments we have come to the point that Tobes has been diagnosed with Celiac Disease. The news is terrifying but also comes as somewhat of a relief - a major diet change and he should be "Ok". I am in the process of writing it all out to share eventually - first to help to explain to everyone what drew us to this conclusion (not many people know the whole story), but also because of how much help it was for me to read the stories from others. The diagnosis was a bit of a struggle for us - we had people accuse me of jumping on the gluten-free bandwagon (which, if anyone actually knows me, knows how much I am DREADING going gluten-free), and our own doctor was dubious before he saw the bloodwork. Toby has been clinically diagnosed with the disease, and we have a fantastic specialist at the local children's hospital who has already provided us with so many resources!

I hope to have other updates soon, including the backstory to all this.

Happy Fall!