I’m seeing contamination everywhere now. It’s my biggest headache at this early stage of getting the hang of what’s involved in looking after a coeliac, and I’ve realised that with a capable but not always switched on 7 year old in the house I can’t rely on people observing good anti-contamination hygiene. Separate foods is the only answer.
Just now my 7yr old put peanut butter on his (gluten containing) toast. Just too late I saw him wipe the excess PB onto the side of the tub, in an instant rendering that tub useless for Tamsin. It wasn’t his fault, he didn’t know, and I can’t expect him to exercise the level of vigilance and awareness that the adults will have to. In fairness, as that tub was 75% used already, it would have been untrustworthy. The only solution is to buy fresh tomorrow and put some in separate jars for Tamsin.
Marking the separate foods
I’ve invented the effective but ugly system of putting rubber bands round Tamsin’s foods. Depending on whether it keeps the lid on or goes round a jar, it can prevent someone casually using it because they can’t get the lid off without removing the band, or it acts as a visual or tactile reminder. My 7yr old will be fine with that and will proudly announce to everyone that if it has a rubber band on it, it’s one of Tamsin’s separate foods!
This does make me realise though that many of the pots I have open will be unsuitable for Tamsin. Squeezy bottles of eg ketchup (some are coeliac safe, some aren’t – that’s a label-reading job) or salad cream are fine, but anything you delve into with a spoon is no good for her if it’s already open.
I’ve been asked several times now whether there’s any history of coeliac disease in our family, and the simple answer is that I don’t know. DH’s family has the odd member who feels better on a wheat-free diet, but so do lots of people for lots of reasons, it’s not diagnostic. My mum feels better eating less wheat too and I get wierd and wonderful stomach aches but test negative, so I really haven’t got the foggiest if it runs in our family without coeliac testing.
DH reckons he doesn’t have coeliac disease, and I planned to keep an eye on my 7 yr old son to see if he showed any symptoms. He does sometimes say he doesn’t “feel too good”, sometimes feels sick, is pretty skinny and not the tallest in the class, all of which is now starting to sound a bit familiar.
The dietitian told us yesterday that all Tamsin’s immediate family should be tested, so this morning I rang our GP to sort out testing for DH and DS. The receptionist needed to speak to the doctor first, so he called me later. He suggested DS bypasses the GP stage and goes straight for coeliac testing at paediatric outpatients. I was a bit surprised by that, but if it means one blood test rather than two it’s not a bad thing, and I might wimp out and allow DH to take him. DS was fine with his toddler injections but that was a while ago and given Tamsin’s reaction I don’t know how he will take to the whole thing. We just have to wait for his appointment to come through from the hospital now. DH has a blood test at the surgery soon.
Tamsin has a half brother and sister through her dad and they need to be tested too. There’s a chance her sister could have it, taking various things into consideration, so I’ll follow the outcome of that with interest. By coincidence DH’s sister is also being tested, so within a few weeks I should be able to answer the question of whether it runs in the family.
While we were waiting for confirmation, we had a call from the paediatric dietitian who was very keen to see Tamsin before the new term started. She emphasised what a critical age this was for Tamsin physically and how important it is to get her diet right now. I promised to call as soon as we knew, which I did, and today we had the visit.
I was a bit meh about having to drive to the city, pay a fortune for parking and lose two hours of my life when I’m a keen cook and understand about how to avoid gluten, but that was a serious misjudgment on my part. Providing gluten free foods is just the start.
Logically it makes complete sense that safe GF foods can be contaminated by gluten-containing foods, but I simply hadn’t realised that coeliacs can be that sensitive to gluten. Tamsin and I both came out struck by contamination more than any other aspect the dietitian had discussed. At home it means Tamsin needs a separate toaster, separate butter (a knife used to spread butter on gluten-containing toast then put back in the butter effectively contaminates that butter for a coeliac), freshly cleaned utensils dried with a newly clean tea towel – no making a ‘normal’ sandwich on a board, brushing the crumbs off into the sink then putting the board back for the next person.
In the immediate aftermath of the appointment, I put a brand new block of butter in a clean butter dish for Tamsin and put a rubber band round it for easy identification. So far I’ve resisted the urge to designate separate utensils for her, but I’m washing anything I use to prepare food for her, such as the choppin board and knife used to make the sandwiches I sent with her to her sleepover. For main meals this won’t be such an issue as all our suppers will be gluten free/coeliac safe, but Tamsin will need breakfast and lunch or a packed lunch for school.
We were advised to make the GF packed lunch first and make sure any GF foods are cooked above non-GF in the oven. I’m already aware of that sort of thing from catering for vegetarians and non-vegetarians, though usually we all eat vegetarian main meals. It will be harder for Tamsin in her Food Tech lessons, so I need to have a meeting with the teacher and talk all this over with her.
Possibly more of an issue is a proposed school trip to three eastern European countries next year. As the dietitian talked about ensuring chefs were gluten free cooking trained I felt my optimism drain away. That sort of thing seems impossible to ensure with any certainty. It’s hard enough in the UK (I don’t fancy my chances of a straight conversation about gluten free cooking standards in my local Chinese takeaway, and we don’t live somewhere with much choice), but factor in a hefty language barrier and completely different culinary cultural norms and it feels completely unfeasible.
Tamsin is 14 and growing fast, and as her system starts to heal (which I’m told can take a year) and she benefits from more and more of the nutrition in her food she’ll make up for lost time. It’s important for any teenager to eat well and be well-nourished, but a coeliac has ground to make up.
We were advised that Tamsin needs to have the equivalent of a pint of milk a day. Her usual breakfast is chopped fruit, natural yoghurt and oats, which makes a contribution to that, cheese features a lot in my cooking and she can have a hot chocolate every day, so I think we can get to a pint without much trouble. I meant to ask about food supplements but forgot, but the woman was so thorough I think she would have mentioned it if it was necessary.
Tamsin is entitled to GF foods on prescription until she’s 18, though we were told that some areas are phasing it out now that so many GF foods are available in the shops. The foods are all breads, pasta and pizza bases, but there’s lots of choice within that, including bread mixes and ordinary cooking flours.
Tamsin is allowed 15 units a month and unless I make a change with the dispensary she’ll get the same foods each month. We’ve started with various choices, taking into account school lunches, but we’ll see how it goes and make changes if we find we’re drowing in pasta or running out of bread.
Coeliac UK app
The dietitian took us through everything we need to look for when we’re shopping. It became clear that the Coeliac UK app is going be indispensible as it tells you exactly which version of which products in which shops are coeliac safe. A handbook is produced once a year, but clearly that can’t stay up to date in the same way as the app. As Tamsin is under 16 I’ve joined on her behalf and I’ll be the one doing the food shopping, so the app is more use to her than to me for now. Having said all that, I can’t get any signal in Morrisons, unlike in Aldi, so the handbook will have its uses there.
There’s a free version of the app and the full version that you access once you’re a paid up member of the society. Needless to say, you have to be a member to access the food directory.
We’ve had a very hectic fortnight, and Tamsin’s diagnosis came in the midst of it all. I’d been expecting it (the specialist had described the hysteria-inducing blood test as “a formality”. Gee thanks.) but didn’t want to jump the gun by buying gluten-free foods and of course going gluten free was out of the question until we knew for sure. If for any reason the gene test had come back negative Tamsin would have had to go to the big regional hospital for a bowel biopsy under general anaesthetic and for this reason had to continue eating gluten until we knew for sure.
When the call came, just before supper which my very capable husband was cooking as I had taken DS to his swimming lesson, Tamsin decided to have one last supper before going gluten free. The next day GF living was to begin in earnest. I prepared for this by doing the obvious thing: going out and buying shedloads of special GF foods and meticulously meal planning for the rest of the week. The real problems started at the weekend as we were going away for a weekend. Not just going away, but staying somewhere with no cooking or refrigeration facilities – marvellous! I took the view that if I could keep her fed in those circumstances, I could keep her fed anywhere and anyhow.
What you have to bear in mind reading the following is that I was total rookie – only last week but it feels like the other side of the rubicon. I had no idea of the mistakes I was making, even as someone who considers herself pretty well informed, so you MUST see the dietitian after diagnosis. My head is still bulging with information.
I planned with Tamsin what she (and I, as I decided to eat the same as her) was going to eat at each stage of our travels, as we were moving around a bit and seeing various people. Quorn sausages featured heavily (some lines are GF, some aren’t), as did ridiculously expensive gluten free cornflakes and too many sugary foods. In my ignorance I focussed on the food and didn’t consider the preparation.
Breakfasts were wrapped convenience items such as Belvita Breakfast Biscuits or GF cornflakes with milk, neither of which are a problem as they come straight out of packets and aren’t really handled or processed further before eating. However, we had several picnics which featured both gluten-containing products and GF foods, and my focus again was on which of these Tamsin ate, not how they were being handled. Looking back just two or three days I can’t believe I was so blind, but at the time I didn’t know about contamination. I’ll write about that properly in the post about seeing the dietitian, but contamination in preparation and handling is just as much of an issue as eating when going gluten free for coeliac purposes rather than as a dietary choice.
This last week has been a blur and I have a list as long as your arm to get through, but I’m planning to make a list to go on a kitchen cupboard door identifying utensils to be kept for Tamsin’s food, and the procedures. It’s probably overkill, but the dietitian has succesfully terrified me about contamination. For now Tamsin is eating only food that’s come from home – since our few nights away together she’s had sleepovers with friends on consecutive nights and I’ve had to send her with food and explain to the parents that she is to eat only that and nothing else. I’m sure as time goes on and we learn things will calm down, but for now I’m on a kind of coeliac lock down.
We had about a week to wait between the letter from the GP asking us to make an appointment, and the day of that appointment. I spent that time acting normally to my daughter, but privately reading everything I could on coeliac disease and quizzing my Scottish friend by email on every little details of her daughter’s experience.By the time we went back to the GP I was sure it was coeliac disease, but in what has now become known, for good reason, as “a university challenge”, my husband was confident I was overreacting and predicting she’d just be prescribed a few vitamins and would perk up in no time. Still sure I knew everything, I expected to walk out with a coeliac diagnosis, all sorted. I didn’t see a coeliac referral to the specialist coming our way.
As we walked in to the surgery, before bottom had made contact with chair, the doctor was asking us if we’d heard of coeliac disease. She explained a bit about it, all of which I was expecting but which was news to Tamsin. She accepted what she was being told without fuss, but much of it was rubbish, for instance:
free prescriptions for the rest of her life
she’d probably be able to eat a bit of gluten – she’d have to try it and see
she should stop eating all gluten straight away just to be on the safe side
Complete rubbish, all of it. That last one is the worst in the short term. Anyone waiting for a coeliac referral MUST continue to eat gluten, otherwise the tests may show a false negative which means no diagnosis and therefore continued gut inflammation. The middle one’s plain wrong too. Post diagnosis, eating any gluten whatsoever can set up a reaction that can take the best part of a year to heal. The first one is just a pain, but she will at least get free gluten-free foods on prescription until she’s 18.
Fortunately, being 14 Tamsin was seen by the paediatric outpatients, which has a shorter wait than adults’ and is more friendly. Tamsin’s a smart, confident girl, but easily cowed in medical matters – precisely how much we were about to find out. She was weighed and measured by a friendly nurse, then we went in to see the specialist (be still my beating heart – I hope we get him next time!). He took a general history from us (all of which we’d already given to the GP) and then wanted to take bloods, at which point all hell broke loose.
To cut a long story short Tamsin had a panic attack for about 10 minutes but then briefly the fight went out of her and the doctor was able to take the blood. At this point Tamsin became hysterical for about 20 minutes, to the point where the doctor told me he was seriously concerned she was going to have a fit. Ultimately she calmed down and they let us go, but she can’t go through that every time.
The blood test was sent away for gene analysis – yes, there’s a gene for coeliac disease. It had to go away to a big regional hospital (we live in something of a backwater) but we were told to expect results within a fortnight. I rang the hospital several times as two weeks loomed as I was desperate to know, and eventually, after three weeks, I was told that the results were back but that we couldn’t have them until the specialist had seen them, but then he would ring us. The following day (inevitably, when I was out), we got the call. It’s a good thing I wasn’t content to wait for the written confirmation as 10 days later we still haven’t had that.