Coeliac Awareness Month; sharing our story to promote awareness.
Photo courtesy of author.
My son when he was about 3, with a bloated tummy.
My eyes widened, and I just about fell off my seat; I had just read some of the lesser-known side effects of gluten in children, and I could see my son in every single one of them. Things started to fall into place, and suddenly my eyes were opened to how long the poor kid had been suffering. Some of the things we thought were 'just him' were associated with gluten, and I knew I had to ring my husband straight away, let him know what I had just found out and see what he thought. We aren't new to this issue; we had taken him off gluten and dairy and nightshades and pretty much everything you could over the years – but none of them made enough of a difference for him to make it worthwhile. Still, we focused on the physical symptoms, not the neurological symptoms that I had just researched.
Let me start at the beginning and give you a brief rundown of our journey with gluten intolerance.
The Beginning
It started well before my son was born; my husband has been off gluten for over twelve years due to severe intolerance. He was having many typical tummy issues with gluten – bloat, wind, nausea, etc. He had been in and out of different doctors, but no one could give a definitive answer because it required him to stay off gluten long enough to gain the benefits and know conclusively what it was. Back then, being gluten-free was not trendy, and coeliac disease was only just becoming known in the wider community; but there were still not a lot of alternatives available in general everyday life. Eventually, he got so sick with a tummy bug that he landed in the hospital and needed a week off work. At this point, a Doctor in the hospital took on his case and organised for him to have all the tests required for coeliac – he wasn't coeliac, but he was sick enough that we had to start taking it seriously.
Thus began our gluten-free journey.
The Middle
Both our children were born with allergies; my daughter couldn't have dairy for the first few years of her life, but it has since outgrown it and is fine, but it hasn't been as cut and dried with our son. He has had severe bloat and other digestive issues, and we have tried numerous times to figure out what was causing it, but nothing has made sense over the years. He has had a biopsy and other tests that have required hospitalisation; the only diagnosis we have been given has been Rumination Syndrome (another story for another time), but that hasn't helped with the symptoms.
The Now
What I read talked about behavioural symptoms of gluten intolerance, and suddenly it all made sense. The article mentioned four specific things that fit my son perfectly, these are:
1) Picky eating
2) Brain Fog
3) Anxiety
4) Irritability
We have been fighting the system concerning his schooling as well. To me, there have been red flags all over the place, but the school have always excused it as 'He's just a boy; he'll outgrow it', but this has never been good enough for me. So I have had him tested for ADHD, Irlen Syndrome and several other things over the years; I worried that while he isn't bad enough to raise a 'red flag' in the schooling system, he could still fall through the cracks and struggle all his life. Not something any Mom wants to see.
But the article mentioned above gave me hope, and once more, we have taken him off gluten.
And what a difference this time (possibly because he is old enough to understand and voice the changes physically himself):
Physical Changes:
His wind has settled down, and his bloat has gone. He now knows what has gluten and what doesn't, and while he still misses certain things (Mcdonald's Cheeseburgers being his main lament), he asks if things are safe and stays away if they're not. He also can tell when he has eaten gluten now, as his tummy feels funny, and tells us – such a huge breakthrough.
Neurological Changes:
We had a recent Teacher-Parent Interview at the school, his teacher showed us his writing from the last term versus his writing now (maybe six weeks apart), and there is a significant difference in terms of tidiness. She said he was focusing more but still needed some work on that (our little daydreamer). His reading has improved, and he is finally reading above his age for the first time ever. The fog seems to be lifting, and he is starting to thrive; it's so exciting to watch.
We have had long-term issues with anxiety. We have arranged two different types of counselling, one private and one through the public health system. However, just coming off gluten seems to have had more impact, and his teacher says his confidence has grown enormously these past few months. I am thrilled at all the changes happening in such a short amount of time and feel such relief that we have managed to figure out what has been causing all these issues; I really had no idea they were all interlinked until I read that article, but it all makes so much sense now.
Over the next couple of weeks, I will be discussing Coeliac Disease and Gluten Intolerance in more depth. There is still so much unknown about it, and those who don't deal with it personally often assume you're off gluten due to choice; they don't realise how sick gluten can make some people.
I also want to discuss the difference between an allergy and an intolerance, as again, the terms have become interchangeable, yet they're very different beasts. Despite knowing the difference, I still use them both mainly because people take allergies more seriously. Yet, the intolerance has required significant lifestyle changes for us and has made an immense difference to my husband's and my son's health.
I also want to discuss what gluten is and where you find it. The symptoms – gastro and neurological, as we're discovering it affects so much of your day to day life. And I will finally finish this series by going into detail about what a gluten-free and dairy-free pantry looks like and what you can use as alternatives, and share some of the fail-safe recipes that I have honed over the years with you.
I hope you continue to join me as we go on this journey together, it is something that affects a lot of people, and you likely know someone who doesn't eat gluten. I often get asked for recipes from friends who have someone coming for a gluten-free meal, and they panic because they think they have no idea what to make. So let me take that panic away by offering you advice and safe recipes over the next few weeks.
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