Author: Louise NorthHantsMum

One of my objectives for NorthHantsMum is to share some of my experience of being a Mum.

The past three years of Motherhood have been really tough for me.

I haven’t talked about it on NorthHantsMum because it’s been a very, very difficult turn of events that we’ve dealt with privately as a family. Not knowing what was “wrong” with Miss NHM for nearly 3 years was indescribably draining and stressful.

However, I’ve realised I can’t be authentic on NorthHantsMum without talking about my experience of Miss NHM’s Coeliac Disease.

We’ve had many discussions as a family about whether it’s the right or wrong thing to share this with NHM Readers as it’s a very private thing.

I’ve talked to Miss NHM (6 years old) about it and she was very wise and told me that it’s ok to tell other people about it because it might help them too. That, right there, is one of the reasons why my daughter is so awesome.

Coeliac Disease

Miss NHM was diagnosed with Coeliac Disease in May 2017.

Coeliac Org say this about Coeliac Disease:

” Coeliac disease is a well defined, serious illness where the body’s immune system attacks itself when gluten is eaten. This causes damage to the lining of the gut and means that the body cannot properly absorb nutrients from food. Coeliac disease is not a food allergy or intolerance, it is an autoimmune disease.” (Coeliac.org).

1 in 100 people have been diagnosed with Coeliac Disease but the belief is that it is actually 1 in 25 people who have it.

There are over 200 possible symptoms of Coeliac Disease and it takes the average sufferer 13 years to be diagnosed. Medical advances are moving forward so quickly that it’s easier to be diagnosed these days, but Miss NHM is still incredibly lucky that we established what the issue was in just 2.5 years, particularly as there is no history of Coeliac Disease in either of our families, that we know of. (Coeliac disease does run in families but not in a predictable way)

The journey

I’ve alluded to it on the blog before but the 2.5 years leading up to her diagnosis were harrowing. I’ve written a post which explains the impact that Coeliac Disease has had on our lives but I’m no where near ready to publish it. It’s still too raw.

When your child is sick and you don’t know why and it takes years to find out why…yeah, it’s been really tough.

I was a bit naive about coeliac disease. I’d heard of it and knew people with it but I thought it was just a case of someone avoiding gluten in their diet and then everything would be fine.

It isn’t.

It’s far more serious than that.

We have to monitor EVERYTHING that Miss NHM eats, to ensure that it doesn’t contain gluten. She has regular blood tests and we have to monitor her energy levels very carefully as gluten free (GF) carbs don’t have the same energy density as “normal” carbs.

However, I am so, so, SO very grateful that Miss NHM was diagnosed so early in her life.

The impact of Coeliac Disease

Coeliac Disease has had a huge impact on my role as a Mum.

Every time we do something or go somewhere I am continuously thinking ahead. Do we have enough food? Will there be any alternatives that she can eat if we don’t have enough? Can we take our own food? Do they have any understanding of Coeliac Disease? Will someone offer her something and I will have to leap in and whip it away from her before she eats it? Do we have a subsitute to hand? Have they even heard of cross contamination?

There are the things that you would expect to look out for, like anything containing wheat, e.g. bread and pasta.

But 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. There are many, many, many more products which contain gluten which we have had to remove from Miss NHM’s diet.

On the rare occasion that we eat out or at someone else’s house, I’m checking to see whether they understand about cross contamination which is really important for people with coeliac disease. For example, you cannot put a knife in butter that has been used on “normal” bread, because even one crumb can cause Miss NHM weeks of pain and discomfort which affects her wellbeing, her health and her education.

I feel like I spend a lot of my time educating our friends and family, who have in the most part been amazingly supportive, about what cross contamination is and what Miss NHM can and can’t eat.

Using the coeliac.org phone app is second nature now. It’s fantastic!! There are over 100,000 food items listed and you can search by product name or bar code. This little app has been a life saver on many occasions.

Attending events and going anywhere new is now a BIG thing. Birthday parties are a nightmare, with birthday cake and sandwiches. We have been incredibly lucky that parents who we don’t know who have hosted birthday parties, have gone out of their way to ensure that Miss NHM doesn’t get singled out and isn’t treated any differently. We are very, very thankful for that. I try to make it as easy for other parents and friends by offering to provide food as it’s already a part of our reality.

Holidays abroad just aren’t an option at the moment although Coeliac.org has lots and lots of awesome advice for this.

I frequently get invited to review restaurants on NHM but we have to be so careful these days that I just ask one of the NHM Writers to go instead as it’s not worth the drama of having that discussion about the food not just being gluten free but also being free from cross contamination.

It’s such a HUGE part of our lives that I can’t write about being a Mum without talking about it.

Coeliac Disease and NorthHantsMum

As a result of the experiences that we have had with the NHS (unfortunately pretty dreadful in this instance) and The Prison for two years, most of my energy has been spent dealing with all of this and more. I’ve been fairly quiet on the blog over the past few years because of this.

However, now that Miss NHM has been on a Gluten Free (GF) diet for nearly a year and we’ve moved her to a far more sympathetic and understanding school, and as my energy is returning because I’m no longer battling with the institutions in Miss NHM’s life, I’m finding the urge to write more about our lives and more about my experience of being a Mum.

I don’t want NorthHantsMum to turn into a blog which is all about our experience of Coeliac Disease. I don’t want to bang on and on about it (well, I will try not too!) but I do feel that one of the reasons that we’ve been through this experience is so that I can share what we have learnt and also use this as an opportunity to educate people a bit more about what Coeliac Disease is, what it’s like being the parent of a child with an autoimmune disease and how it impacts our lives.

I never, ever, EVER wanted to be that Mum who has to make a big deal about what their child eats ALL the chuffing time.

I never wanted to be the Mum who has to check every…single…item that passes my child’s lips.

But I am and I’m dealing with it.

We’ve been incredibly lucky so far with the support that we have received from our wonderful friends and family and I hope this post goes a little way to explain what it’s like being the Mum of a child with a serious autoimmune disease.

Coeliac.org

If you would like to help Miss NHM with managing her disease, one of the best ways you can do this is to help raise funds for Coeliac.org. They have been invaluable for us.

For example, last month Miss NHM presented to the whole of Y1 and Y2 about Coeliac Disease as part of “Inclusion week” and we used one of the “Young Champions” packs from Coeliac.org to help with this. I won’t dwell on the fact that she told the Y1’s that she got Coeliac Disease from when a tarantula bit her as a baby (facepalm!) but I’m so proud of her for doing this because less than 6 months before she wouldn’t have physically been able too.

One of the ways you can help to fundraise is to join Coeliac’org’s weekly lottery where you can win up to £10,000 every week. It costs just £1 a week to enter, or £2 to double your chances of winning.

https://www.coeliac.org.uk/get-involved/support-us/weekly-lottery/

The money raised will not just help Miss NHM but anyone impacted by Coeliac Disease.

As always, thank you for your support and thank you for reading NorthHantsMum!

Louisex

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