Coeliac Disease: Hidden Disability. A Life Changing Diagnosis For My Daughter

Coeliac Disease: Hidden Disability? A Life Changing Diagnosis For My Daughter

So 2018 was the start of a new journey for our little family. 

My daughter was diagnosed with Coeliac Disease. It came as both a relief and with a heavy heart. She had been poorly for so long; agonising stomach pains, anaemia, faecal incontinence, fatigue, and irritability. So in a way it's fantastic to know why she has had to deal with these horrible symptoms and that they are manageable with the right diet.

But now comes the responsibility of knowing she will have to manage this disease for the rest of her life.

It started at Christmas 2017 when Ariana was doubled over in pain on Christmas Eve. I was all set to take her to A&E when she sat bolt  upright, said it was better and promptly fell asleep. Luckily for her, Father Christmas had already been so her being awake most of the night didn't hamper his delivery schedule.

From then it was a cycle of about three weeks which resulted in her gradually getting worse until she had another episode. The doctors were baffled and thought it could be mesenteric adonitis, which is a swelling of the lymph nodes in the stomach. But when it came back again in March it hit with such brutality that she was practically see-through with paleness, limp, and throwing up. So I whisked her off again to A&E.

She had bloods and from these tests her Doctor thought it could be Coeliac Disease and put a referral in to the Paed Gastro team at the hospital. The wait should have been 17 weeks but (and I make no apologies for this) I acted as a pushy mum and kept ringing until I got hold of the secretary who looked at her results as I was on the phone.
Well, no-one likes to see their child in pain.
She was super fantastic and had the consultant look at them while I was on the phone too. They fast tracked her and the next week she had more blood tests. And from those she received her diagnosis.

She is lucky that she was diagnosed without an endoscopy and that the professionals we have seen were all top notch.

I have always been thankful for the NHS, and never more so than now. It's a wonderful institution and we are incredible;y lucky to have it!

So...where do we go from here? More blood tests, appointments with the gastro team, appointments with the dietician, a good clean out of the pantry? I will blog as we go. To keep you up to date with what is going on and how she/I are coping.

It's a huge, life changing diagnosis. One that she will have to learn to manage as she gets older. I try not to think about all of the things she will miss out on (good bread, take-aways as a student, never having to worry when she eats out... ) because the list is endless and it makes my heart hurt as her mum. BUT, it could have been so much worse. Her symptoms could have been caused by not just a life-changing, but a life-limiting illness. And we are lucky to have caught it at such a young age, so her chances of a 'normal' life are hugely increased—less chance of needing bowel surgery, less damage to the gut and the bones.

But it's going to take a lot of getting used to for everyone around her.
So I shall gather her up in more hugs than normal and be thankful for what we have.

nb... the cake in the picture was baked in Feb, before we knew what was going on, I feel bad now for feeding my daughter food that was basically poisoning her...but it was a yummy cake!!



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