Health Update: This is turning out to be a tough year

The last time I updated on the blog about my son's health was sometime in March, when we were putting my son on an elimination diet in an attempt to bring down the swelling in his glands.  Click HERE to see that post.  He was scheduled to undergo an ultrasound to check on his glands.  A lot has happened since then.

The glands didn't shrink with the diet, although his rashes disappeared and we realized that he can't have any dairy.  We had been giving him small quantities, but the rash disappeared when we took it out, so it's gone permanently.  He used to be able to tolerate goat's milk, and we will try that again in the future, but for now it's all off limits.  The follow-up ultrasound showed that his glands were actually getting bigger, despite the change in diet, and that's a concern.  So, we embarked on another round of tests to see if we could figure out the problem.

Those two weeks were the worst of my life. 

A lung x-ray, an abdominal ultrasound and more blood work.  They checked for vitamin deficiencies, lung cancer, leukemia, and a host of other illnesses.  Waiting for the results of those tests was agony, but we were lucky to hear that all the results came back negative. 

Except that there's still the pesky problem of his enlarged glands that nobody seems to be able to explain away.  They're much larger than they should be. 

Then, 10 days ago, he was glutened.  Nobody's quite sure exactly what happened, but he ate something at daycare that he shouldn't have.  My son says he had a bite of his friend's pasta, so I'm going with that, but who knows?  The problem is that his glands are even bigger than they were before as a result of the gluten, and he's had diarrhea for the past ten days. 

I know this is a gross topic, but I also know that there are parents reading this with their own kids experiencing these symptoms, so I'm writing this to provide info to people like them.  When I say diarrhea, I mean almost pure liquid.  There's nothing solid there, and although he tries to hold it in almost all day (which is painful and makes him miserable), it sometimes gets so bad that he can't.  He's had several accidents, and yesterday we went through four outfits before he finally let us put him in a pull up.  He was furious, and embarrassed, and felt like a baby, and it broke my heart.  He's four years old and has been toilet trained for years.

Different people have different reactions to gluten, but for my son it's always been diarrhea.  Usually for about two weeks.  The doctor said there's nothing that can really be done except to keep him hydrated, feed him well and as much as he wants, and give him a probiotic.  His appetite gets out of control when healing from a gluten attack, and he eats adult sized portions.  He's already skinny, but he lost the 2 pounds it took him a year to gain in the span of a week, despite eating almost non-stop, all day, every day for the past ten days. 

He goes back at the end of the month for a follow up ultrasound, but I already know they're going to find enlarged glands.  I can feel them just by touching his neck and head.  He's home with me today, but I worry for when he starts school in September.  Two weeks is a long time to be sick in one go, and no kid in kindergarten wants to go to school in a pull-up.  His ongoing illness has prompted me to apply for a leave from work starting in September, when my maternity leave ends.  This latest bout illustrates why.  I can't just call in sick for two weeks at a time, nor can my husband.  It will be an interesting year of finding a way to bring in an income while staying home with my youngest and working out my older son's health issues, but until we know what's wrong, this is the way it has to  be.

I want this happy little boy back

To biopsy or not to biopsy

Today we paid a visit to the gastroenterologist at the Hospital for Sick Children in Toronto. We've kept Etienne on a strict gluten-free diet since the end of October because he had lost 1/5 of his body weight in less than 2 months and had severe diarrhea whenever he consumed any gluten at all.  This, however, poses a problem for strict scientific diagnosis of celiac disease.  In order for blood tests or a biopsy to be accurate, the patient needs to be consuming gluten on a daily basis for several months prior to the tests.  We knew this going in to the hospital, but went mainly for the advice and direction we hoped to get from the doctor.  Unless a biopsy is performed, there cannot be a strict scientific diagnosis of celiac.  However, even on a gluten diet, there is much scientific evidence that shows that tests are not always reliable in children under the age of three.

So what's a parent to do?  The only treatment for celiac is a strict gluten-free diet, which we have him on.  We submitted to some blood work to see if anything could be detected through the blood, but again, his age and the fact that he's been gluten free for almost 2 months can affect the results.  We are scheduled to return for a follow up appointment in six months.  While unable to confirm a diagnosis of celiac at today's appointment, the doctor did agree that there are two aspects to diagnosis; one being the scientific tests, and the other the lived experience of the patient.  Etienne's chronic diarrhea, irritability and weight loss, coupled with his complete turnaround once the gluten was removed are signs that cannot be ignored.  He suggested we keep him on a gluten free diet until the follow up appointment, at which time we can discuss whether we want to put him on the gluten challenge, where he will consume gluten each day for a few months and then submit to a biopsy.

At this point, I'm not inclined to submit to the biopsy.  I'm not against the testing, I just think that we might wait until Etienne is old enough to understand the process and also help vocalize what he's feeling when he consumes foods with gluten.  Right now, we only see the diarrhea, but he's too young to explain any other symptoms he might be feeling.  Ultimately, whether he gets categorized as someone with a gluten intolerance or as someone officially with celiac disease, the treatment is the same: a strict gluten-free diet.  We've committed to the diet, so I'm comfortable waiting until my son can be an active part of the process before moving to the next step in the diagnostic process.

Welcome!

I started this blog to chronicle the journey my family is taking in regards to my son's digestive health issues, and to connect with others experiencing something similar.  I want this blog to be a positive forum that offers honest feedback about our daily experiences navigating the world of gluten-free, dairy-free living, as well a place to offer tips, recipes, and suggestions for celiac friendly venues in the GTA and beyond. 

Back story:

My son Etienne is 21 months old.  Since infancy, he's always had digestive issues.  We switched him to lactose free formula, but he was always in some sort of discomfort and he occasionally suffered from diarrhea.  When he started daycare at 18 months, the problems got worse.  Starting on the first day, he came home with a rash across his back and chest, and he was experiencing diarrhea.  He had recently been vaccinated, so the doctor told us it was a reaction to the vaccine.  Only it didn't go away.  He began experiencing three to four loose bowel movements per day, he had a chronic runny nose and the rash came and went.  To make a long story short, two months, two stool samples, two urine samples and two blood tests later, we were able to rule out parasites as the cause.  We were extremely worried.  His behaviour had changed and he was irritable and difficult to manage.  He had lost several pounds in a two month period and his pants were falling down. 

My mom mentioned to me that there was a history of celiac on her side of the family, and suggested I look into that as a possibility.  I did some research on the internet and found that his symptoms fit the bill.  After speaking with my doctor, she suggested that we try eliminating all gluten and dairy from his diet for a few days and see what happened.  We did, and his symptoms disappeared almost immediately.  We've had him on a strictly gluten and dairy free diet ever since, and he's regained all the weight he'd previously lost.  We've been referred to a specialist to explore the matter further, but that's a story for another post!

We're just starting our journey, and are learning how to navigate the world outside of our home with a small child who doesn't yet understand the dietary restrictions that are placed on him.  It's only been a month, but already I've experienced the difficulties of circumventing a daycare menu that is gluten heavy, the joys of soy yogurt, and how quickly symptoms can return when my son accidentally ingests something containing gluten.  I look forward to any comments, stories or positive suggestions on anything celiac related.

I'm looking forward to sharing this journey with you!

(It's also my mom's birthday today, so Happy Birthday Mom!)