Coeliac diagnosis – symptoms, impact and life going forward

Coeliac Disease Diagnosis

I remember both of Beth’s diagnosis as clear as day, the Coeliac diagnosis was different in the fact that Beth was conscious and nearly 5 years old so she was more clued up by then.

Further reading; A Type 1 Diabetes Diagnosis – signs and symptoms guide

We came away from the hospital and Beth asked me ‘ Does this mean I can’t have nice food anymore’ I replied ‘No darling, you just can’t have your Custard Creams anymore’!

What do you say in those circumstances? I seem to recall custard cream biscuits a particular favourite of hers at the time so I put it into a context that she would hopefully understand, in other words – things will be different.

Her diagnosis was no shock, I’d suspected Coeliac Disease for 6 months, I recall asking her Diabetes Nurse if insulin played havoc with going to the toilet and diarrhoea? Of course it does no such thing.

My mummy senses were tingling that something was terribly wrong and then one day I walked into the living room to find Bethany with her mouth wrapped around the corner of brick fire place – she was eating the wall!

Our fireplace bearing it’s tiny tooth marks is now a huge feature in our lives and an excellent conversation piece.

Google eating brick and you get iron deficiency.

Google iron deficiency, you get anaemia.

Google anaemia you get autoimmune conditions.

Google autoimmune conditions you get a list to include Type 1 Diabetes and Coeliac Disease – 1 in 6 Type 1 Diabetics are Coeliac. Eureka!

That’s why I wasn’t shocked when we sat in a hospital room to get test results with three professionals who each had concerned looks on their faces.

Coeliac Disease Symptoms

Symptoms are a very personal thing to each diagnosed individual, some may never display or suffer any of the typical symptoms, others are awfully sick on them.

Beth seems to be somewhere in the middle, although a contamination plays havoc with her blood sugars (follow link to read more about Beth’s Type 1 Diabetes A Type 1 Diabetes Diagnosis – signs and symptoms guide).

Beth’s symptoms were, and apologies for the descriptiveness;

• Very bloated tummy
• Dissolvable poo that floats on the surface of the toilet water (looked like Weetabix)
• Discoloured second teeth; yellow in colour with white spots
• Brittle hair that snapped when brushing
• Spooning on the toe nails (nails grow in a wiggly fashion)
• Peeling nails
• Pale skin
• Dark Circles under eyes
• Tired and lack of energy

Within two weeks of following a Gluten Free diet Beth had colour in her cheeks and a sparkle in her eyes. I remember driving away from my mums one day and heard Beth giggle in the back of the car – it wasn’t until then that I realised that it had been a while since I’d heard her giggle!

Total Gluten Ban

No gluten for the whole family was my initial thought, 6 months went by. That’s right, I said 6 months! I could not bring myself to eat something as simple as a cookie in front of Beth, and in all honesty, I still do to a point.

Well behaved and successful trips to town had always been rewarded with a cake from the bakery. Now I avoided town. It wasn’t until 5 years later that I started this up again with Beth once Costa added gluten free goodies on the menu.

Cheeky Friday night chippies were a thing of the past. Impulsive meals out, popping into the first inviting café we pass on our holidays, staying at a Premier Inn and making the most of the kids eat free menu. I could go on for ever!

Those of you in the know, will share my frustration when I say these words;

Salad…

Jacket Potato…

Chocolate Brownie or Ice Cream (minus the wafer!)

If anyone else walked into a café, restaurant or bar and was presented with a laminated menu that consisted of those four items alone they would think it was a joke and ask the waiting staff to point out the hidden cameras!

The point I’m trying to make, without getting too hot under the collar, is that it made sense to me in the early days that the whole family gave up gluten and we huddled together within our gluten free bubble called home.

May I be so bold to say to anyone reading this who is just starting on their gluten free journey with their child not to do the same. It was not fair on Lewis, it was not fair on my husband nor myself and it was far from reality for Bethany.

National Coeliac Awareness Week 2023

Every year Coeliac UK highlight an aspect of Coeliac Disease to raise awareness. Last year was #ShineALightOnCoeliacDisease

#ShineALightOnCoeliac 9-15 May 2022

1 in 100 people in the UK have coeliac disease, but only 36% are diagnosed. So our mission for Awareness Week 2022 is to shine a light on this misunderstood disease and get more people on the road to recovery, more quickly. You can help us raise awareness by spreading the word at school, work, restaurants, hospitals – anywhere and everywhere you go!

This year Coeliac UK are focusing on the lesser known symptoms of Coeliac Disease which is such an important message to get across. No two Coeliacs are the same and to believe that symptoms are restricted to the better known bloating, nausea, diarrhoea  and constipation can end up with many people missing other symptoms and seeking a diagnosis.

#CoeliacAwarenessWeek 15-21 May 2023

Our mission for Coeliac Awareness Week 2023 is to highlight the lesser known symptoms of coeliac disease and to do this we put a call out to our community to ask you to come forward to share your stories. Find out more about the incredible group of people who came forward to share their coeliac disease journey with us, following their experience living with some of the debilitating and lesser known symptoms of coeliac disease.

These symptoms include: extreme fatigue, persistent mouth ulcers, unexplained neurological symptoms such as ataxia and peripheral neuropathy, unexplained anaemia, unexplained subfertility (both male and female) and recurrent miscarriage.

Life for us now

So there you go, Our Coeliac Diagnosis was originally written back in 2015 when I began Glutarama.

How far we’ve come in that time, Lewis with his official ASD diagnosis, then Bethany with her ASD diagnosis, then me with my food intolerances coming in from every angle!

Let’s not forget the oodles of baking that’s been going on in that time 300+ gluten free recipes in fact!

A gentle nod to scroll to the bottom of this page to see some of my many delicious recipes proving that life is a drama, but gluten free doesn’t have to be.

Something else worth noting is that Bethany has develop wonderful skills in articulating and recording her conditions so you may also be interested to read what she has to say in A teenager perspective on Coeliac Disease.

For more information on Coeliac Disease, signs, symptoms and life being gluten free refer to the Coeliac UK website.

I love to see your own photos of my bakes, dinners and treats head to your favourite social media account and don’t forget to tag me in @glutarama

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