Coeliac Disease: Newly Diagnosed

NB: Before you read this, please note that I am not a medical expert, these are just my notes on what I’ve learnt about Coeliac Disease in the past two years since Miss NHM was diagnosed, which might be helpful to others. 

Miss NHM was diagnosed with Coeliac Disease in May 2017 and I went public about this in March 2018 which you can read about in my “Being Authentic” post.

You can also read about the post that I wrote about Coeliac Disease 18 months after Miss NHM’s diagnosis.

It’s nearly two years since her diagnosis and during that time I’ve learnt a LOT about Coeliac Disease and what it means to my daughter and our family.

I’ve had a lot of Mum’s come to me recently saying that their children have been diagnosed with CD and if I have any advice or suggestions, so I thought it would be easier to just put together a post to share what I’ve learnt in the effort that it helps more people (which is what NorthHantsMum is all about!!).

Coeliac Disease: Newly Diagnosed

I cried when Miss NHM was diagnosed.

I’m still not sure whether it was tears of relief or worry.

Probably a combination of both because at least we would know what we were dealing with. Having lived with an un-diagnosed coeliac for 6 years, knowing what it was that was causing Miss NHM so much pain and issues was a BIG step in the right direction!

I knew it was CD when I received a call from our GP a few days after Miss NHM’s initial blood tests.

It can be very overwhelming when you are told that your child has an lifelong auto-immune disease. It can be even more overwhelming when you realise that it affects everything your child eats or drinks.

Everything.

I know what it’s like to feel very lost, confused, worried, guilty and many other emotions.

Wondering how you are going to be able to help your child adjust, cope and live a normal life and still maintain a semblance of your sanity.

But, it does get easier. It’s not easy, but it gets easier.

Coeilac UK

If there is one thing that I feel is the most important thing to do when your child is diagnosed with Coeliac Disease – it’s to join Coeliac UK. They have been absolutely amazing and the gluten free food checker phone app that you can download which you can use to scan bar codes of food to check if it contains gluten, has been priceless and invaluable for us.

If you do nothing else, you MUST join Coeliac UK and use the phone app. I think it’s about £30 a year for a family membership but it’s sooooooooo worth it. Also, make sure that you follow their Facebook Page. That’s also been invaluable for us.

Mr NHM and I both have the gluten free food checker app on our phones because you can use to scan the bar codes of over 100,000 products to see if they have gluten in and we also have the Venue guide downloaded on our phones so we can see places to eat when we are on the move. The Venue guide isn’t great but it definitely helps.

We also requested the Young Champions pack which Miss NHM took into school to explain about Coeliac Disease to her peers. This really helped her to understand what Coeliac Disease is and how it affects her.

Things I have learnt

As I’ve said above I’ve learnt a lot about Coeliac Disease and even though this post is probably going to be reeeaaalllly long, hopefully it provides you with some insights and suggestions that will be useful when your child is “freshly” diagnosed.

Definitely check out my “Being Authentic” post for suggestions of food to watch out for. It’s the things that you wouldn’t expect like barley squash, chocolate, chips, marshmallows, soy sauce, most ketchups, some fromage frais, and even playdough which is made with gluten. You want to avoid anything with “Malt” or “Barley” in and look for “Spirit Vinegar” instead as Spirit vinegar is GF.

Cross Contamination

Cross Contamination is the bain of Coeliac Disease. As I’ve mentioned before, it takes an awful lot of time explaining to “Muggles” (those people who don’t have CD, which I suppose I’m one of too! lol) what CC is and what it means. It takes 1 crumb of anything with gluten in to poison/gluten Miss NHM and she is sick after for 3 weeks or more.

We are gluten free as much as possible at home. Our kitchen is probably 98% gluten free (I REFUSE to give up marmite if I don’t have too!). When Miss NHM was diagnosed I went through EVERYTHING in our cupboards and freezer and gave away to our neighbours anything with gluten in.

We also replaced all of our chopping boards, that had been used with bread products, all wooden spoons, our oven pans and cleaned our oven thoroughly.

It can be expensive having an exclusively gluten free kitchen but it’s worth the risk for us to ensure that Miss NHM doesn’t get sick.

You don’t have to do this though but it is worth ensuring that you have spaces in your kitchen which are exclusively GF and have no risk of CC.

Easter Eggs (I’ve put this at the top because Easter is coming up!)

Easter Eggs aren’t as bad as you think! The first year after Miss NHM was diagnosed she ended up with 6 dairy and wheat free easter eggs, none of which were particularly nice.

So Mr NHM went and did some research on the Coeliac UK website and discovered that LOTS of “normal” easter eggs are also gluten free and creme eggs are also GF.

Local Restaurants

For those of you who live in Basingstoke and North Hampshire, these are the restaurants that we’ve had the most luck with and where Miss NHM hasn’t been glutened.

ALWAYS, always, always, tell the server who seats you that your child has Coeliac Disease. Don’t be shy about this. You must tell them because then what normally happens is that the Manager will come over to take the order and ensure that your child’s food is handled appropriately.

We try to look out for those restaurants that are Coeliac UK accredited as it means that all of the staff understand about being gluten free and the risk of cross contamination.

Coeliac Accredited local restaurants

Pizza Express – excellent and have a good variety of children’s food (just a pain in the arse that Mr NHM whines about going there cause he doesn’t like the food! <facepalm>).

Presso Winchester – Brilliant and we’ve eaten here a couple of times. They have a GF child specific menu.

Miller and Carter Steakhouse Basingstoke – Brilliant but very expensive and they don’t have a specific GF children’s menu.

Pho Reading – Excellent and we love it here!

Cote Brasserie Basingstoke – we haven’t eaten here yet but definitely plan too!!

Sainsburys cafe at Hatch Warren Basingstoke have chips that are gluten free so Miss NHM has a children’s portion of ham, egg and chips with peas. Just a shame about the recent staffing issues at the Cafe. Hope they get it sorted soon as it’s one of the only reasonably priced places that we can actually eat out as a family!!!

Zizzi’s Basingstoke – we’ve only eaten here once but they were good.

Browns in Reading – we haven’t actually eaten here but they are accredited and it’s on our list to try.

Chiquito in Camberley – we haven’t actually eaten either here yet as it’s quite pricey but they are accredited and it’s on our list try.

Frankie and Benny’s Basingstoke – we haven’t eaten here yet because I’ve always had a mixed experience with this Frankie and Benny’s and I’m not sure I trust them.

I don’t touch Pizza Hut or Dominoes because even though they are Coeliac Accredited the staff are all very young and I just wouldn’t put my daughters health in their hands.

Non Coeliac Accredited local restaurants that are still good with GF

Wagamamas Winchester – but we don’t go to the Basingstoke one anymore as the staff are rude and dismissive, so we go to the Winchester one as they have always been excellent and very accommodating.

Yo Sushi in Reading are good but only because Miss NHM tends to eat only the fruit salad, the edamame beans and the GF puddings! Not healthy I know but we don’t go very often so it’s worth it!

Bartons Mill – everything here is supposed to be GF but surprisingly they aren’t Coeliac Accredited. It’s definitely on our list of places to try soon.

House28 in Sherfield on Loddon does GF items but they don’t understand about Cross Contamination unfortunately.

Aingels Cafe in Winklebury have Gluten free food and they do understand about cross contamination and have been really good when we’ve been there.

Hayley recommended Brighton Hill Pizza Hut (takeaway by Asda) all the time. Haven’t had any issues at all. Also the fish’n chicken next door are GF on Monday and Tuesday.

A Basing Bakes – not technically a restaurant but Helen sells her GF products at the Winchester Farmers Market.

Shopping for Food

These days it is possible to find gluten free alternatives to most foods.

However, you’ll learn pretty quick that a single supermarket will not cover everything that you need. Every chain of supermarkets stocks something different. We do our main shop at Sainsburys and I ALWAYS use online shopping because GF items are then automatically saved in my favourites, so I don’t have to go hunting on the shelves.

We also do an Ocado shop every quarter because Ocado is by far the best place for gluten free alternatives. They have an AMAZING amount of GF stock so definitely worth investigation. However, it can be quite expensive which is why we don’t do our regular shops at Ocado.

Whenever I’m near a supermarket that I don’t do regular shop in, I pop in to see what different GF products they have. Waitrose, Tesco’s, Morrisons and Asda are all excellent and all have slightly different GF offerings.

FB Groups

These are the FB Groups that I highly recommend and that have been invaluable to me:

Coeliacs in the UK

Children with Coeliac Disease

Coeliacs Eat Out Too

Coeliac UK North Hampshire Local Group

Coeliac UK – Berkshire Support Group

Fleet Coeliac Group

Coeliacs Eat Abroad

I also really, really like glutenandme and a balanced belly facebook pages, specifically for notifications about other new GF food.

NHM FB Groups

I also have a couple of FB Groups that are specifically for NHM Readers. One is for children and parents with a food allergy or Coeliac Disease and the other is Gluten free food – Non Branded which shows you the products that NHM parents have found which aren’t automatically listed as “free from” or gluten free.

If you would like to join both or either, please PM me at “Louise nhm Smith” and ensure you are a friend of mine or drop me an email at NorthHantsMum@gmail.com.

Food Hacks

You will notice that lots of the “Free From” food in the Free From aisle in any supermarket is very expensive. It’s also loaded with sugar so not very healthy.

Which is why it’s fairly important to try to avoid as much of that aisle as possible and identify those products which are automatically gluten free and aren’t specifically labelled as gluten free products as they won’t have an automatic 30%+ price hike attached.

However, in the beginning, when we didn’t know what we were doing, we tended to stick with the “free from” ranges as it was just easier. It takes time to come to terms with things and learn what foods are safe and which ones aren’t, so be gentle with yourself!!!

Prescription Bread and Flour is a battle to get these days. If you have any problems with your GP not giving your child the right units then definitely get in touch with your Dietician. Our GP didn’t want to give Miss NHM her entitlement of prescription bread so we spoke to the Dietician who sorted it all out for us.

“Normal” GF bread is sooooo expensive and absolutely rubbish as lots of them have air holes. We’ve had no issue with the prescription bread apart from that they sometimes send us the wrong amount. Definitely invest in a large freezer if you want to go this route as you can freeze the bread and it will be fine to use when you defrost it. Otherwise you might find yourself with 6 loaves of bread to use within 3 days!!!!

Emotional Implications of Coeliac Disease

This has been a tough one. Because of the way that Miss NHM was treated at her previous school and because she’s now getting older and understanding the limitations of Coeliac Disease on her life, her anxiety levels have been very high. Dealing with this has been really hard, much harder than the physical issues.

She recently had blood tests for her second Coeliac Clinic (Coeliacs have to have annual blood tests to ensure that their TTG, B12, Vitamin D and Calcium levels are all within the “normal” range). Unfortunately, as this was her 4th set of bloods, even with the Emla cream, she was very, very worried and unhappy about it all. The hospital staff are always so brilliant with her but I also find the whole experience very draining.

Children’s birthdays at school have been very hard on Miss NHM. Many times people hand out home made cakes or biscuits and I never get any warning as to when this will be. I try to have a small packet of haribo (which is GF) in my pocket when I’m picking up at the school run, to ensure that Miss NHM doesn’t feel like she’s missing out too much.

Travelling with Coeilac Disease

I was absolutely terrified about taking Miss NHM to another country and her getting sick. But if you do your research it’s actually not that bad. We went abroad for the first time since diagnosis in August last year and went to America where it was soooo much better, even than here! I didn’t sleep for the 3 days before we left as I was so stressed and anxious about it but where we stayed in Florida were really on the ball and she wasn’t glutened/poisoned once.

Spain and the Canary Islands are supposed to be really good. You can read up on the best places to go on the Coeilac UK website or the FB groups. We wanted to go to Vietnam and Cambodia but we’re going to wait for a few more years until Miss NHM is a little older before we brave that one.

In this country we always go self catering. I also highly recommend looking at Youth Hostels. They aren’t like they used to be, you can get family rooms at a very reasonable rate now. The bit that is most important for us is the self catering kitchen. So we can prepare food for Miss NHM (I take my own pans and chopping boards) and we can get dinner for us in the hostel restaurant so I don’t have to cook. There are freezers and fridges that you can use in the self catering kitchens and you can access them whenever you like. We’ve done this several times in the past two years and the hostels have always been absolutely brilliant and several also provide GF food now, although they can’t guarantee the risk of cross contamination.

Other things to look out for 

Food Aversion:  This is very, very frustrating but Miss NHM is very apprehensive about eating “new” foods because of her experiences. It’s not surprising really but it is a total pain in the arse for anyone doing the cooking and trying to keep your child’s diet healthy and varied.

School dinners: We’ve been VERY lucky that the school Miss NHM is at now take Coeliac Disease as seriously as it needs to be taken. Her previous school, The Prison, were bloody awful.

I’m very, very, very thankful that the school Miss NHM have never glutened her and that they take the necessary precautions to keep her safe. I ensure that Miss NHM has a school dinner because I trust the school and it’s one less thing for me to worry about but if I didn’t trust the school she would be having packed lunches. No question.

Birthday Parties: I’ve mentioned before about how lovely most of our friends have been about gluten free food and birthday cakes but I generally speak to the Mum who is organising the party and provide similar GF food for Miss NHM because it’s easier for them because I know exactly what to buy and it means I know that Miss NHM won’t get glutened. Look out for Party bags though. I always provide haribo or suggest haribo as that’s GF.

Your child’s teeth: Calcium isn’t absorbed in the same way for Coeliacs so definitely keep an eye on your children’s teeth and ensure they are brushing them properly twice a day. You can read up more about the impact of Coeliac Disease on your child’s teeth on the “Children with Coeliac Disease” fb group mentioned above.

Coeliac UK Events: Sign up to as many of these as you can! We went to our first one last year in Reading at Green Park and it was fantastic. Miss NHM spent the whole time wondering round and saying “all these people are just like MEEEE!!!!” and eating all of the samples that were available! We also bought loads of food because everything had at least 30% off. You have to register for tickets but the tickets are free and EVERYTHING is gluten free including the food trucks outside. Next time we will get there as soon as it opens so we can get some good bargains. I fell in love with some Warburtons Artisan bread that is normally £4 a loaf but was only £2 on the day. A great day to stock up and we hope to get to a few more GF Fairs later this year.

Extended Family testing: All direct family members (parents, siblings and children) of the person diagnosed should go to the GP and request to be tested too due to the increased risk of them potentially having it. Ensure that those being tested complete the “Gluten Challenge” before having any blood tests as they need to be eating gluten twice a day for at least 6 weeks for the results to be conclusive.

Final Thoughts

I’m sure there is stuff that I’ve missed so I’ll have a think over the next few weeks and see what else I can add to this post, so please check back in a month or so to see if anything else has been added.

Just know, you and your child aren’t alone. There is a lot of support available if you know where to look and there are lots of us dealing with this, in the NHM Community alone!

And also be gentle with yourself. A diagnosis of Coeliac Disease is a pretty steep learning curve and the first few months can be quite intense. As I said above though, it does get easier and when your child starts to feel well again it’s all worth it.

If you have any questions about Coeliac Diseaase that you think I can help with (remember, I am NOT a medical expert so the only advice I can give you is based on my experience) then please don’t hesitate to get in touch with me at NorthHantsMum@gmail.co.uk.

Good luck!!! 

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