Thinking back, of all those things, the days out, the screams in the car on the way home after having eaten Pizza, me in tears thinking ‘another family outing ruined, why do I bother’.
Is there any guilt? HELL YES! I feel guilty all the time, there I was, angry and upset and frustrated with her, and there SHE was, obviously (in hindsight) in PAIN and having a full on reaction.
Any trip in the car was a nightmare, I often had to use all my strength to force her in to her car seat, we had the back arching and the screaming. Funny now that I think of it, I used to give her biscuits to make the car rides easier… and the calm never lasted! I actually cringe at the thought now. POOR POOR girl! Again, this is why I do what I do. Because we just didn’t see it, we just thought we had a ‘very angry child’, we had no idea that she was ILL. We had never heard of Celiac disease. In some ways I feel we failed as parents, simply because we were not educated enough. Its every parents duty to know about ‘stuff’. It took for vomiting and diarrhoea to become so frequent we needed weekly IV’s for us to realise she wasn’t just an ‘angry kid’. In our defense, the doctors didnt spot it either. Our peadiatrician was always commenting about her big big stommach and skinny skinny arms and legs…..
Another DR in the ER SAW her stomach literally ballon up after eating (gluten) and told me to tell the paediatrician upstairs, but still no connection.
Obviously…. in hindsight…. its all as clear as glass!
Hope this blog may help someone else to not have to see these things in hindsight. With over 95% of Celiacs remaining un diagnosed I bet we all know at least ONE undiagnosed Celiac. Maybe your neighbour has an ‘angry kid’. Hit share, hit like, here or on other Celiac blogs posts, help us, the Celiac community, to reach other families like mine, maybe if we had had our diagnosis sooner things would not be the way they are today. Maybe we can prevent that happening to someone else.
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This story just breaks my heart– another child failed. And this is also the reason I started a support group in 2007 after reading about a 4 year old child who was operated on 19 times before finally being properly diagnosed. This after doctors told her parents there was nothing more they could do and she would probably die. A nurse was the one who told her parents to have her tested for celiac, which they did, and that child is alive and thriving today, despite the unnecessary surgeries. We need to do MUCH more education, awareness and support for doctors, pediatricians,even dentists and other health professionals to stop this rampant mis-diagnoses of children and adults– especially of children.
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