How to monitor your children for coeliac disease

Below is an approximation of this video’s audio content:

Today I’m going to be covering a very important topic and that’s how to monitor your child or children for signs of coeliac disease, especially if coeliac disease is already known to be in the family.

Screening recommendations

As you may already know, when someone in your family is first diagnosed with coeliac disease, it's recommended that their close family members get screened as well.

So that includes parents, children, brothers and sisters that are related by blood.

Assuming that everyone is eating plenty of gluten at the time, and they have their blood test and it's negative, then that's great.

However, you have to keep in mind that one negative blood test is not necessarily the end of the matter, and this is especially so for children.

That’s because it's quite likely that most people who end up finding out they have coeliac disease later in life, probably developed it when they were a child.

That’s unfortunate because I've heard some terrible stories over the years from people who’ve experienced all sorts of health issues over their lifetime, when they could have avoided them if they were diagnosed with coeliac disease earlier.

However, things are starting to change, and nowadays more and more children are getting tested for coeliac disease, which is great, because the research tells us that diagnosis early in life not only leads to better health outcomes, but kids who are diagnosed when their quite young also tend to report less mental health issues and better overall quality of life than people who were diagnosed later in life.

So, THAT’S why it’s important to keep an eye on our kids for signs of coeliac disease, especially if coeliac disease is already in the family.

We don’t want to be overly anxious about all this, but I think it’s really helpful to know some of the potential signs that could indicate coeliac disease and red flags which would indicate we need to get them tested asap.

When coeliac disease is already in the family

The current recommendations are that kids who have a first-degree relative with diagnosed coeliac disease - so that means a parent or sibling - should get screened for coeliac disease around every two-three years, even if they aren’t outwardly showing any symptoms.

This is because even without obvious symptoms, there can be detrimental effects on a child’s development if they aren’t absorbing nutrients properly. After childhood, you would then just move to testing if you start developing symptoms or get low in iron and things like that (but that’s a whole 'nother video)!

The 2-3 year screening rule only applies if your child hasn’t developed any

symptoms or issues in-between.

This is where I’ll start to cover the answer to your burning question:

What ARE those symptoms or issues that might arise that I should be looking for?

Symptoms tend to change slightly according to age

It’s quite helpful to keep in mind that the presentation of coeliac disease (so how it “show’s up”) does seem to follow a bit of a pattern according to age.

Generally, the younger you are, the more coeliac disease will follow the "classic coeliac disease" presentation with things like diarrhoea and weight loss or issues with growth. Then gradually, the longer someone goes undiagnosed, the more things start to change to more “atypical" or unusual symptoms, i.e. things that aren’t gastrointestinal in nature.

So in a general sense (and again not everyone will fit this pattern):

Babies and infants with coeliac disease will tend to present with quit severe gastrointestinal symptoms, so things like vomiting, reflux, or persistent diarrhoea. Any of those things in a baby need to be checked out, but if they experience "failure to thrive" which is the medical term for not growing or faltering in their growth, that’s a red flag and needs to be investigated immediately.

With toddlers and kindergarten-age children, symptoms can include all of the above. They might also start having constipation or telling you they have tummy pains. They may have quite a distended tummy, even when they haven’t recently eaten anything. They might be always covered in bruises from climbing.

You may start to see some of the behavioural signs of coeliac disease - things like irritability, tantrums, mood swings. I know what you're thinking, "That's just a normal for that age".

But, as a parent, and especially the primary caregiver, you will know, (and need to trust your gut), if it's telling you something's not right. If your child is clearly unhappy and exhibiting extreme behaviour that doesn’t quite fit the “norm” for them, get them checked out. Don't listen to other people, or even a Doctor telling you it’s normal. Push for a test of their iron levels and coeliac antibodies.

With school-aged children the signs you are generally on the lookout for here can still be all of the above, so tummy pains, diarrhoea or constipation. They might even seem to have trouble with toileting (not making it to the toilet in time for a poo), randomly vomiting or feeling sick after eating, having a lot of aversions to foods (because they make them feel sick), and changes in behaviour.

Also tiredness or being lethargic all the time: that’s not normal for kids no matter how much they’ve been running around all day!

Children can also start to complain of pain in their bones or muscles, which can be a sign of vitamin D deficiency.

They might have poor immunity, catching everything that goes around. When their adult teeth come through they might have defects in the enamel, making them overly yellow or patchy-looking.

Also, again, if they stop growing or slow down in growing, that’s a red flag.

If they break a bone and you think :"hmmm that didn’t seem like it was enough impact to cause a break", that’s another reason to screen.

Once you get to high-school-aged children, the symptoms of coeliac disease can start to get a little more weird and wonderful. There might still be any of the symptoms I’ve mentioned including gastro-intestinal symptoms.

But by now, some of the bodily systems that are being affected by the lack of nutrients are more complex so you can start to see things like loss of menstrual periods or even delayed puberty, anxiety and depression or even eating disorders.

They might also be getting constant/recurrent infections eg chest infections, tonsillitis or yeast infections in older girls, and that’s due to that impaired immune function that we often see in coeliac disease.

This is not an exhaustive list

Let me just state here, this is in NO way an exhaustive list of coeliac disease symptoms in children, nor does there even EXIST an exhaustive list, because it really can turn up in weird and wonderful ways and every child is different.

I’ve tried to cover most of the common ones that I have seen through my practice, my experience and also my research, but please keep in mind that:

- any of these symptoms might overlap with each other;

- they might also come and go;

- sometimes certain symptoms might happen for a few months, then stop and something else will take over,

And that’s just the nature of coeliac disease and why it’s so difficult to diagnose.

But if there’s anything I haven’t happened to mention that you have concerns about with your child, its best to get in touch with your GP.

And AGAIN, trust your parental instinct and don’t take no for an answer if you want them tested.

How to track growth

What I’d like to do is talk a little bit about one of the red flags I mentioned, and that’s delayed growth, which can be one of the first and most obvious signs of coeliac disease in kids.

Notice I said growth, and not weight? Children with coeliac disease will not necessarily be skinny. They may be normal weight or even overweight, so it’s by no means the only sign of coeliac disease.

However, watching out for any delay in a chid’s growth is really important because it’s a big sign that something’s wrong. This is why I always recommend that parents track their children's height and weight with growth charts.

If you go to the World Health Organisation website, you can find the relevant growth charts for your child's age. I recommend getting the weight for age, height for age and weight for height.

If you've previously written down or kept a record of your child's height and weight previously, then that's great, you can plot all that data in and start to see a pattern.

All babies in Australia get a red/blue/green/purple book, and your child health nurse or Paediatrician will likely have started this growth tracking process for you. But after you stop seeing them, it’s up to you.

You track weekly (later monthly) when they’re babies. Then from age 2 to 5 you can track every 3-6 months. After that you can just track them yearly, or every 6 months if you have any concerns.

When to be concerned

Generally, from a health professional’s perspective, we wouldn’t worry too much if only one point on the chart seemed to be low. But if you see the line consistently dropping down then that’s a cause for concern.

It's really important to be as accurate as possible with your measurements for this reason. We don’t want that line zig zagging all over the place with incorrect measurements.

My daughter was tracking nicely until around the age of 5 to 6 when she was diagnosed with coeliac disease when was apparent she was starting to drop down (she only grew half what she'd grown the year before).

Then after diagnosis and going on the gluten free diet, she popped back up to her usual line, and that’s what you want to see.

Don't ever "just try" a gluten free diet instead of screening

The final thing I wanted to mention is that if you have strong suspicions that your child might be showing signs of developing coeliac disease, but your doctor isn't very keen to get them tested because a blood test is considered invasive, then I just want to say... PLEASE don't go down the route of "just trying" a gluten free diet.

Believe me, subjecting them to a 30 second needle is SO much easier than later having to put them back on gluten for six weeks in order to get properly diagnosed.

I see SO many people in this awful predicament, not really knowing whether their child has coeliac disease or not (because you can't test once they're off gluten).

What do you think is going to happen to that child when they reach their teenage years and think "I'm probably not even coeliac" and then start being careless with their diet?

So please please please: If your child is having any of the symptoms I've described - that can't be explained by anything else like a tummy bug OR that just won't go away, AND there is coeliac disease in the family - just get them screened.

You can usually find a blood collector somewhere nearby that has a lot of experience with children. It’s over really quickly and they usually get a little bravery certificate (and sometimes a teddy bear) that makes it all worth it.

If you’d like any help with the gluten free diet then you can visit me over on my Instagram or Facebook page and send me a message, and I’ll let you know how I can help.

That’s it for today, I’ll talk to you again soon!

Kristina Richardson, APD