Starting From Scratch In A Way I Did Not See Coming

Ten years ago I stood in the Baby Factory in Hamilton, six months pregnant, sorting through tiny clothes on the rack with tears streaming down my face.  While I had a suitcase full of baby clothes at home, I had none small enough for the one I knew would be coming soon and prematurely.  I knew that the odds of him surviving and being healthy were good; I wasn’t worried by that stage about losing him.  I just didn’t want him to be in the situation that he was in.  I wanted everything about his life to be perfect, including the very start.  I had had a plan for this pregnancy – namely that it would last for the standard nine months – and I was taking a while to adapt to the sudden change in that plan.  I wanted his start in life to be smooth and easy and it seemed very unfair to have that taken away when he was still so small.

That time came to mind recently as I found myself standing in the aisle at Marks & Spencers supermarket, battling very hard to stop the tears from streaming down my face.  Marks & Spencers!  My happy place!  Then it happened in Dunnes, then in SuperValu, then in Tesco.  I’m getting a grip on it now, but for a while there even a quick trip for a few groceries had me getting out the Rescue Remedy.  While the Baby Factory shop assistants are probably used to hormonal pregnant ladies crying their way around the shop, I’d say it doesn’t happen too often in M&S, but all the lovely people on the Coeliac Parents Facebook page I’ve joined certainly understand.

A few months back, Noah, the baby who needed the tiny clothes even though I didn’t want him to, was diagnosed with coeliac disease.  This came as a complete surprise to all concerned, especially the doctor.  Of all the children she sends for testing, she said, he was the last one she would have expected to come back positive.  Luckily she had him tested anyway.  The doctor I took him to almost a year earlier for the same symptoms didn’t.  I don’t know whether to be cross that Noah suffered for longer than he needed to or thankful that I got a year’s reprieve from the bawling-in-the-supermarket scenario.

Noah, who was energetic and growing well and (apparently) healthy, used to get a lot of sore tummies.  They were sometimes at bed time, more usually in the morning.  He’d be okay by lunch time, so once I realised that there was nothing that made it go away except time, I’d usually send him to school anyway.  Even so, by the time I took him to the doctor, he was missing at least a day of school a fortnight because although there was no vomiting or anything like that, he was sometimes so miserable that I couldn’t bear to send him off.  Of course, a couple of hours later I was always looking at him thinking ‘You’d have been fine at school!’ but I just felt sorry for him.

When I first took him to the doctor, he wasn’t enjoying school particularly.  He didn’t like his teacher and was bored.  He often cried at bed time on Sundays about having to go the next day.  So I’m not surprised that the doctor focused on anxiety as a probable cause, because I did too.  There would be months when the sore tummy did not show up at all, which seemed to confirm the psychosomatic theory.  Then early last year we were back to missing a lot of school.  I’d been reluctant to go back to the doctor because he’d told me that undiagnosed tummy pain is the most common thing that doctors see in children that age and in most cases no cause is found, although it eventually resolves itself.  I knew this to be true from experience with my other children, and going to the doctor here’s really expensive, so I didn’t want to pay €60 to be told it again.  But we went anyway, and got a different doctor, who set us to keeping pain diaries and things but also requested blood tests.  She called me a few weeks later, said she hadn’t been expecting coeliac at all because we’re not Irish and there’s no family history, but there it was.  He went on the waiting list for an endoscopy and biopsy and, although he hadn’t the hint of a symptom for the next few months, while he was still asleep after the procedure the doctor who’d been poking around in his tummy told me that his poor little villi were completely munted and I should go home and start working out how to feed him without any gluten for the rest of his life.

Now, I’ve always said how lucky it is that none of my children have food allergies because I don’t have the patience for it.  We operate here on a system where I cook whatever I can be bothered with out of whatever I can find in the cupboard or on special in Tesco and you just eat it.  Coeliac disease is not an allergy, but I’ve had to start paying attention, and sometimes it’s fine and sometimes it’s really really hard and I end up having a meltdown in the gravies and sauces aisle.

In recent years gluten intolerance has become trendy.  This means that, on the good side, there is a much wider range of gluten free food available and some of it’s not even hideously expensive.  On the less-good side, you do have to be very clear to people that the tiniest particle of gluten which may be cross-contaminating anything that Noah eats will damage his body, because he has an actual physical illness and not a lifestyle choice going on.  I recently read a restaurant review of a trendy place in London frequented by ‘blonde Chelsea women fizzing with intolerances’, which I just love.  I’m not saying gluten intolerance isn’t a genuine condition, and I am certainly thankful for the improved range of food available to Noah because of it.  I am saying that it muddies the waters a bit, that’s all.

The hard part isn’t buying gluten free food, it’s not buying food that isn’t gluten free.  There is a difference.  There are products that say ‘Gluten free’ on them, which means that not only do they not contain gluten, but that the entire manufacturing and packaging process has been independently inspected to make sure there’s no chance of any cross-contamination occurring at any point.  This certification is expensive for the manufacturer, so many don’t do it.  The Coeliac Society of Ireland prints a book each year with a list of compliant products and the general rule is, apart from fruit, vegetables, rice and unprocessed meat, if something isn’t in the book or certified on the packaging, a coeliac person can’t eat it.

This makes the diet far more restrictive than it needs to be.  You know how the back of the box sometimes has a ‘may contain’ allergen list?  Those lists are voluntary.  Manufacturers don’t have to label possible cross-contamination.  My life would be so much easier if they did, because if there’s no way to be certain, I can’t use it.  In truth, depending on the product, at the moment I often do anyway.  If it’s a one-ingredient product – tinned kidney beans, say – I’ll take the chance.

Noah is basically asymptomatic.  Since the few weeks last year when he had enough pain that I took him back to the doctor, April I think it was, he has had no pain, or at least nothing that he’s thought worth mentioning to us, and he didn’t start the gluten free diet until the end of August.  Being asymptomatic is less common, although not unusual.  When I read the Coeliac Parents’ FB page, I’m very glad for Noah’s sake that it’s like this for him, because for most children it’s vicious and painful.  The more usual scenario is that two hours after being glutened – and it can take a single crumb – a child will be vomiting and having cramps, sometimes diarrhoea, and this can last up to several days.  They are often exhausted and lethargic for a few more days.  In adults it can result in a lot of time off work.  Some people get mouth ulcers and sores, skin rashes or hives, migraines: not nice stuff.  Some parents on the page have children diagnosed as babies or toddlers and this adds to the difficulty.  One poor lady was desperate because her three-year-old has developed such a fear of food that she won’t eat at all and is wasting away.  She’s used to food causing her such pain that although she’s hungry and wants to eat, when the spoon gets near her mouth she’ll do anything to avoid letting it in, and she’s just too young to understand that the food her mother now knows to give her is safe.

Although I’m incredibly grateful that Noah has escaped all this – and it seems to be luck, there’s no such thing as a mild case of coeliac – it means that we’re flying blind all the time in regard to food in the grey area.  The vast majority of products that I would normally buy are not certified as gluten free, and do not contain gluten as an ingredient, but may be cross-contaminated.  I can’t give them to him just in case – gluten causes just as much damage to Noah’s insides as it does to the children who projectile vomit immediately – but it means he’s probably missing out on a lot that he doesn’t need to be.  His favourite place to eat out, for example, used to be a diner chain called Eddie Rocket’s.  They have a few products that don’t contain gluten, but use wheat flour in their kitchen and don’t guarantee a lack of cross-contamination.  Noah’s favourite thing there was milkshakes, which should be safe enough.  If he had a reliable response to gluten, I’d be willing to let him try a milkshake.  If he had the first one and was sick, we wouldn’t go back.  But if I could work out that they were only contaminated one time in twenty, say, by his response, then I’d let him have one occasionally.  It may not be what the doctor would approve but he’s ten years old and saying to him that he can never go to Eddie Rocket’s again was pretty tough.

At Christmas he wanted an ice cream soda.  I got the expensive vanilla ice cream, listed as being fine in the Coeliac Society book, for him and the cheap one for everyone else, but he didn’t like the one I got for him, and it was the one request he’d made for Christmas day food, so I gave him the other ice cream in his soda.  It has no gluten in as an ingredient, and several other flavours in the same range were listed as being fine in the book, so I decided it was a risk worth taking.  He was fine, of course, but then he almost always is.

He has a paediatrician appointment this Friday, and they will re-test his blood to check whether the very high antibody count has gone down since being on a gluten-free diet.  That’s the only indication we have as to whether my occasional-calculated-risk approach is working, or whether we’re going to have to go full-on, nothing that’s not certified hardcore.  I really hope it doesn’t come to that because currently, whatever we eat, there’s usually an alternative for Noah.  If we have to become 100% strict, he’s going to miss out on a lot. Or we all are.  This is a new dilemma for me: do I get something that one child has to miss out on, or do I not get it so the other three children all miss out too?  It comes up a lot.  Once his diagnosis was confirmed we all had to be tested too, because it’s genetic, and most people who have it – up to 80%, is the estimate – are completely unaware.  To be honest I was almost kind of hoping that one of the other children came up positive too, just so Noah wouldn’t be the only one, and also because going out of my way so much would seem more efficient if it was for a third of the family instead of a sixth.  Because obviously wishing a chronic incurable disease on your children for your own convenience is totally fine.  The rest of us all came back clear, which is a good thing really.

If it does turn out that my calculated-risk approach is not sufficient, I’m never going to be able to go to the supermarket at all, because it’s stressful enough as it is.  The problem comes when I just need one ingredient to complete the planned meal, and whatever it is doesn’t come in a gluten-free version.  So then I’m standing there thinking, okay, I can’t make that meal at all then, and here it’s 5:00 and there are five hungry people at home and the proper weekly organised shopping is coming tomorrow in the Tesco van so I just need something for now, but everything I can think of needs something that doesn’t exist, and can’t we just go without tea this one time, and I could get this option but then Noah would have to have a boiled egg instead and he really likes this thing we’d be eating and he’d cry, and…well, you can see how it all spirals.  Then I’m standing there in tears just like I was ten years ago because he’s just a small person and although there are far worse things that could happen to him, I want his life to be perfect and easy and now he’s in this situation that I can’t change.

Noah himself is sanguine about the whole thing.  He’s got upset only three times that I can think of.  Once, I made a lovely healthy vege soup and realised as I served it out that I’d chucked barley in and therefore poisoned it for Noah.  I didn’t even know that he liked vege soup, and the fact that he had a lovely warm buttered bun while we had garlic bread didn’t help, but that wasn’t my best moment.  Then one day I took Noah and Cassia to the Druid’s Chair, our local pub (and Bono’s, but I haven’t bumped into him yet) because we had some time to kill before their science class.  The only thing Noah could have was ice cream (and even then, most ice cream is in the grey area) but he loves ice cream so that was okay with him until it arrived with a chocolate chip biscuit crumbled on top.  He just looked at it and burst into tears.  It was quickly replaced and he was happy but I felt like crying myself for a minute there. And just before Christmas one of the mums made some gingerbread men for the class.  Noah was okay at school, as they all ate them in front of him, but he cried when he got home and told me that one of the kids in his group had been teasing him, saying how delicious it was and how he was enjoying it.  After that I realised that I needed to take a few treats in for the teacher to look after so she has something to substitute, but there are always these hurdles you just don’t see coming.  The school bake sale, for example.  I asked on the FB page how others deal with that and quite a few just don’t send their kids to school on that day, which I wasn’t desperate enough for but can understand.

And then there’s simply the everyday business of doing anything in the kitchen without poisoning him myself.  Typical scenario:  the kids are eating breakfast while I make lunches for the younger two.  I wash and dry Cassia’s apple, put the tea towel down on the table while I pour her milk, then wash and dry Noah’s apple – then realise that while the tea towel was on the table it was near the small localised tornado that is Cassia’s plate, and was on top of her toast crumbs or spilled rolled oats, which have now touched Noah’s apple.  So I get out a new tea towel and start again.  Or, I’m cooking sausages, with Noah’s carefully segregated, and they need turning over so I grab the tongs and, distracted by the peas boiling over, quickly turn them all before realising that his need their own pair of tongs and I’ve now contaminated his entire dinner.  Or I make mashed potato using the common butter from the cupboard rather than Noah’s own butter which lives in a tub in the fridge so nobody can put toast crumbs in it, and now he can’t eat any of it.  Jeez Louise, it’s a wonder I’m not melting down a lot more often, when I think about it.

Although I’ve just spent nearly 3,000 words moaning, I will say this:  I am grateful that, out of all the incurable diseases my child could have, it’s this one.  As long as he sticks to the diet – and I’m not even thinking yet about when he’s a teenager, out of my sight, lurking around town with his friends who are all spending hours in McDonalds – he should be completely healthy for the rest of his life.  You can die from coeliac disease, because if you ignore it you will eventually become malnourished and anaemic, but you’d have to work really hard to make that happen.  It’s an auto-immune disease, and having it does increase your chances of developing others – type 1 diabetes is common on the Coeliac Parents FB page – but Noah will be tested for all those things on Friday and regularly after that, so we’ll keep on top of it.

I’m also glad to have found the FB page.  Most posts are asking whether particular products are okay to eat, but you can ask or say anything relevant and everyone is really kind.  Everyone was so sympathetic when Noah was teased about the gingerbread men, they’ve all been there, and they all understand that although the kid usually forgets about it pretty quickly, it’s rough on mum too.  We can all moan together about how other people just don’t get it.  McDonalds, for example, have just released a vegan happy meal, to celebrate Veganuary, which is this new thing here.  The only thing coeliac children can eat in McDonalds is chips, and then only if the particular branch uses their fryer for chips exclusively.  Being vegan is a choice.  I admire some of the reasons why people make the choice, but if you’re vegan and you’re hungry enough, you can eat anything you want.  If you’re coeliac and there’s nothing there for you, you stay hungry.  Before you get all judgey and think ‘You shouldn’t be taking your child to McDonalds anyway so that’s no great loss’ (don’t worry, I’d be thinking it too) you have to remember that food isn’t just about keeping you alive.  Sometimes it’s social.  When you’re ten, if you’re invited to a birthday party, especially in winter, there’s a good chance it’s going to involve eating at McDonalds at some point, so what do you do if your child can’t eat anything on the premises?  Let them go anyway, with their pre-packed lunchbox, so they can smell the food they want but can’t have and see all their friends tucking into it?  Make them miss the party?  No parent would choose either of those if they could avoid it but, despite there being 40,000 people in Ireland with coeliac disease, McDonalds has no plans to make it any easier to eat there (people on the FB page emailed them to ask, having been given what turned out to be false hope by the vegan happy meal launch). Catering to vegans is the in thing at the moment, and I have no problem with that, but I do think that catering to people who have no choice about restricting their diet should come first.

Right.  I’ve run out of pity party.  I will say this before I go, though.  If you’re related by blood to me, Josh or our children, or if your child is, then bear in mind that although we don’t yet know where, Noah’s coeliac comes from somewhere on the family tree.  It can be elusive, and can pop up at any age, so make sure you know what the symptoms can look like, and if yourself or your child comes up with any of them, don’t ignore it, and don’t let your doctor ignore it.  Noah appeared to be completely healthy, but he really wasn’t.  No matter how much I dream of those halcyon days when we could order a pizza delivery if we all had colds and couldn’t cook, or eat out without an hour of research and planning beforehand, or pop into the supermarket at the last minute without ending up in tears, I suppose it’s better that we know.





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