My Experience: Coeliac Disease, 18 months after diagnosis

I know several of you have commented that my personal posts have been quite negative for the past few years. This isn’t exactly a positive post either, so please stop reading if that’s not your bag.

Coeliac Disease – 18 months after diagnosis

I’ve already blogged before about how I find the run up to Christmas to be really tough.

This year it’s feeling tougher than ever before.

Miss NHM was diagnosed with Coeliac Disease at the end of May 2017 when she was 6 years old, and whilst she’s doing really well I am struggling with it.

At this time of year EVERYTHING involves food.

There is the school disco with hot dogs, crisps, drinks and sweets. The Brownie end of year party with pizzas, cake and sweets, the class Christmas party with party food, making biscuits to tie in with this terms subject, the fundraising cake sale, the Christmas lunch, Christmas play dates at other peoples houses, the end of term party…

It ALL involves food. Oh and squash of course because she can’t have Robinson’s squash as it has barley in it so we have to double check what she drinks too.

Miss NHM is actually really good at checking things herself but she’s only 7 years old and she can’t be expected to check everything, although she is getting really good at asking if something is gluten free or not.

I have to check Every. Single. Thing. that she eats or drinks.

At this time of year it is utterly draining and relentless.

Coeliac Disease is a lifelong auto-immune disease for which there is currently no cure, that is triggered by eating gluten. I’ve mentioned before about how cross contamination is a really big issue when you are a Coeliac. It’s awesome that gluten free food is becoming more widely available but having to explain to people, and remembering to explain to people, the risk of contamination, that one single crumb will mean that Miss NHM is sick for a month, is exhausting.

It takes Miss NHM about a month to get over being poisoned. It affects her health, her emotional well being, her studies, her sleep. It affects everything.

It’s getting to the point where I have to say to some people in our lives that every time they poison (gluten) her they increase her risk of stomach cancer in later life. Which is so frustrating when Mr NHM and I work so very hard to ensure that she isn’t poisoned.

Recently Miss NHM was poisoned (glutoned) by a member of our extended family, even though I provided all of her food for the visit. As a result of Miss NHM’s immune system being compromised by being poisoned, she then caught a stomach bug which has taken her much longer than a “normal” child to get over. She’s very pale and very exhausted, not least because gluten free carbs don’t have the same amount of energy in as “normal” carbs. We are hoping that she recovers in time for Christmas.

We now literally have no one we can trust to look after Miss NHM that can look after her properly. I have some wonderful close friends who have offered so that Mr NHM and I can have a break but Miss NHM suffers from anxiety at being left with others because of everything that has happened too her and my lovely friends already have enough to deal with in their own families.

When I went public about Miss NHM’s Coeliac Disease earlier this year, another Coeliac parent commented that this disease really shows you who your real friends are. This is so very true for us. We’ve noticed that we don’t get invited to as many things as we used to. This might be because we are getting old and miserable (facepalm) but I also think it’s because people are just too scared in case they poison Miss NHM. Which I totally understand it’s just hard to cope with sometimes.

Having said that we have often been overwhelmed by how understanding and supportive people can be. Many of our friends have been wonderful about it. Other parents, who we have never met before, have gone out of their way to organise food and birthday cakes and birthday parties, to ensure Miss NHM doesn’t feel different or miss out. This has restored my faith in humanity on a number of recent occasions.

There are more good things. Miss NHM doesn’t know any different because this is really all that she’s known. She also suffered with “brain fog” pre-diagnosis so there are huge gaps in her memory from when she was younger. She is so good when she’s offered things that have gluten in, particularly by children at school who hand out home made goodies on their birthday, and will always give them to her teacher.

Her school have been absolutely amazing, soooooo much better than The Prison. Her class recently went on a school outing and the teacher went to the same place a week before, to scope it out and ensure that Miss NHM wouldn’t be poisoned. Her teacher has also ensured that all of the ingredients for their recent class baking were gluten free. The Brownie Ladies have also been absolutely fantastic. There are lots of activities which involve food at the Brownies but they always review every item with me in advance and I’m not expected to go and get alternatives for them.

It’s just tough at this time of year. Christmas seems to be ALL about food. It’s great that we can get more gluten free alternatives than we could even at Christmas last year but it’s making people aware of the risk of cross contamination which is the real challenge and explaining just how serious it is.

At the moment, the beginning of December, I am literally living for the 21st December, when Miss NHM breaks up for the Christmas holidays and Mr NHM and I have two weeks off work. We get to relax and know that we don’t have to constantly check all food and drink. We are hoping to brave it to the two local restaurants that we feel safe that Miss NHM won’t be poisoned at (both are accredited restaurants with Coeliac UK). We won’t be seeing any family this year because it’s just not worth the drama or stress of Miss NHM being sick for ANOTHER month.

So yeah, this isn’t a positive post but this is my life at the moment. NHM is a blog that’s supposed to be a bit about my experience of being a Mum and this is my current reality.

I know that come January we can heave a sigh of relief that we got through it and we won’t  have to really worry about food until July when the end of the academic year starts. And we have much to be thankful for, not least that it normally takes 12-13 years to be diagnosed with Coeliac Disease and Miss NHM was diagnosed in under 3 years.

If you are struggling at the moment, for whatever reason, just know you are not alone.

Thanks for reading to the end ;-).

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2 thoughts on “My Experience: Coeliac Disease, 18 months after diagnosis

  1. Allison Reid Reply

    Keep it real Louise – it’s how life is for you and your family now. It’s good to spell it out to those of us who haven’t had to provide a safe environment for a person with Coeliac Disease. And it is parents who carry the surrounding stress of an on-going condition like this.
    On a brighter note I have seen families successfully make the fundamental changes necessary and work through many difficulties for the sake of their child once Coeliac or Type 1 diabetes are diagnosed and raise their child to be able to make the most of education, university, the working world and more whilst managing their disease.
    It’s not in the least bit easy and it’s good of you to share a part of what you are going through on a public platform to help us with no experience of this situation begin to understand and empathize.
    You are a great advocate for your daughter and a strong role model for her to follow.

    • Louise NorthHantsMum Post authorReply

      Thanks Allison for your positive post. It’s good to be reminded that people have had successful lives despite living with Coeliac or Type 1 diabetes. And no it’s not easy but you know that I love a challenge :-D. Thank you for your lovely words. I hope I can help make things a bit easier for her by explaining to others how hard it can sometimes be.

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