Questions, Concerns, Fears

[Janeldt]

My daughter Bella is 4, she was diognosed about 3 weeks ago with celiac disease. We have been doing the gluten free diet and she is responding well to the foods she is given. She also has Down Syndrome and language is delayed for her, so I don't know how she feels. She was asymptomatic and we only discovered that she had Celiac through a routine series of tests that were done because of the Down Syndrome. I guess my questions,(the ones the Dr's couldn't answer) would be what was she feeling like before we removed the gluten? What is she feeling like now? What happens if she gets a trace of gluten? I only give her the foods I think are safe, but then I am still learning, What if I make a mistake? Today she said she had a owie in her tummy, Did she get a trace of gluten and now she is sick? She never complained before we went gluten free. My concerns come from a lack of knowledge, I realize this. I am just so overwhelmed by all of the information, the lists, and it seems like there are a lot of unknowns. Is there an easy way to organize the information so I can be informed, inform the rest of the family and keep Bella safe?

Janel

[nikki-uk]

My daughter Bella is 4, she was diognosed about 3 weeks ago with celiac disease. We have been doing the gluten free diet and she is responding well to the foods she is given. She also has Down Syndrome and language is delayed for her, so I don't know how she feels. She was asymptomatic and we only discovered that she had Celiac through a routine series of tests that were done because of the Down Syndrome. I guess my questions,(the ones the Dr's couldn't answer) would be what was she feeling like before we removed the gluten? What is she feeling like now? What happens if she gets a trace of gluten? I only give her the foods I think are safe, but then I am still learning, What if I make a mistake? Today she said she had a owie in her tummy, Did she get a trace of gluten and now she is sick? She never complained before we went gluten free. My concerns come from a lack of knowledge, I realize this. I am just so overwhelmed by all of the information, the lists, and it seems like there are a lot of unknowns. Is there an easy way to organize the information so I can be informed, inform the rest of the family and keep Bella safe?

Janel

Hi Janel,

It is very overwhelming at first isn't it?

My son also has Downs and celiac disease (but he was diagnosed at 13 yrs old)

In a way discovering my son had celiac disease wasn't too overwhelming as my husband was diagnosed with celiac disease 2 yrs earlier so I was pretty familiar with it all - but I do share some of your concerns!!!

My son never had extreme symptoms and oddly enough never complained of tummy ache - but he was grumpy and tired alot and generally run down.

It's great that your little one has got diagnosed now - while she is asymptomatic.

Coeliac disease is a bit of a slow creeper .... so you tend to not notice all the little insidious changes and accept it as normal for you.

Managing a gluten-free diet is a constant learning curve - but believe me it does get easier! ..until you can't even remember a time when you didn't read all food ingredients!!

You sound as if you're on top of things and doing all you can for your little girl, and yeah - mistakes can happen (like when I found my son eating a mouthful of lasagne!! ) but you learn from them (by throwing away left over gluten meals!) and continue to do your best for your child.

Sometimes my son has 'bathroom incidents' and I'm immediately thinking 'what has he eaten?'..but it's not always possible to trace the cause and determine whether it was gluten or not

What is good news is that at such a young age Bella will grow up being totally familiar with the gluten-free diet and it will just be a way of life for her.

I'm in the UK so I can't recommend any specific sources of info but these boards are a godsend!! and I'm sure people will try to answer any questions you have

[Lisa]

Janel:

If you have any questions about products or any question as well. I can assure you that it will be answered quickly and acccurately.

Like Nikki said, it can be very overwhelming in the beginning. With you language limitation with Bella, I can understand your frustration.

It can be done and you will have a magnificent amount of support here. These are the reasons why so many stay here....a sort of pay it forward kindda thing.