A Mother, Her Daughter & the Diagnosis: Hindsight is 20/20

This is an important story that I’m sure most mothers and fathers go through after they’ve found out their child has Celiac Disease, hindsight is 20/20.  Linda talks about the anguish she feels in the aftermath after learning what was really causing her daughter cries & anguish.

Things Make So Much Sense in Hindsight

 

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. It’s every parents duty to know about ‘stuff’. It took for vomiting and diarrhea to become so frequent we needed weekly IV’s for us to realize she wasn’t just an ‘angry kid’. In our defense, the doctors didn’t spot it either. Our pediatrician was always commenting about her big big stomach and skinny skinny arms and legs…..

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Things make so much sense in hindsight!.

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Comments

  1. Reply

    Tremendous issues here. I am very happy to check out your post.
    Thanks a lot for this article.

  2. Reply

    Yes I know the guilt too well. I was poisoning my baby quite literally to (near) death. My then 5 year old was always in trouble for acting “crazy” and told to get control of himself when he pooping his pants & jumpy at meals. My daughter was always sleepy and covered in bruises and I dismissed it because she was just like me. I had gained too much weight (even though I barely ate), was lazy & too often grumpy as my marriage to my best friend was crumbling because he had over the years become a person I no longer recognized (I even called him by a fictitious name because I saw that guy as a terrible person). And it was all because of GLUTEN. But I won’t let myself feel this guilt. I have tremendous anger at the medical profession for being so bad at recognizing celiac disease. But I’m dealing with it because there are good doctors who are mad about it too & this too will improve. Mostly, I am SO EXTREMELY GRATEFUL to have answers, to have my baby grow into a robust toddler, to have my 8yr old focused and happy and strong, to have a beautiful daughter who isn’t tired or bruised, to be happy with myself for the 1st time in years (even though I’m facing other issues that make my fatigue and brain fog an ongoing battle) and to have MY husband back and be happily married to my best friend again, knowing he isn’t going to fall into the deep hole of mental illness that his older sister lives within.

    When I start to feel the guilt or anger… I find a stranger with symptoms on twitter and tell them my story or answer a forum post on celiac.com or start a business promoting gluten free done right or come up with outlandish ideas to change the world…The sky is the limit! Push off the guilt, your daughter will grow up healthy and you did that!!

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Hi, I’m Kirsten

I am a Gluten Free Nutrition Consultant who’s goal it is to make the lives easier and healthier of those with Celiac disease and those that choose to live the gluten free lifestyle.

Living the gluten free lifestyle is not an easy one and can be very overwhelming: from testing to grocery shopping, to eating out and deglutening your own household, I am here to walk you through the process from beginning to end.  With tips, tricks, humor, healthy recipes and sometimes just an understanding ear, I will guide you seamlessly through.

I was diagnosed with celiac disease in 2010, so I understand completely the trials and tribulations of living gluten free.

 

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