Monday, May 5, 2014

Sweet Faces of Celiac Disease: Meet Rebecca

Rebecca is 8 yrs. old and was diagnosed with celiac disease         less than a year ago.

What symptoms were you or your child having before being diagnosed?

Stomach pains, 'midnight diarrhea,' and loss of hair on her scalp and eyelashes (just half on one eye).

Any other family members diagnosed with celiac disease?

Younger sister tested though test came back negative; Mother has history of allergies and doctor thinks she has celiac/sensitivity/intolerance though doctor thinks testing isn't necessary, just a recommendation for diet change; Father shows symptoms though doesn't want to test or change his diet that drastically.

How has your life or your child's life changed since being diagnosed?

We question everything. We're actually going to look at getting another Ped GI for a second opinion & follow-up since our current one doesn't seem as supportive and doing things compared to the stories and information I see online (which I question how accurate it is......). I think our daughter has become more aware of the food she eats and isn't afraid to ask questions or confront people the way I was at her age. She seems a bit more withdrawn and sensitive, especially when others her age comment on her diet, though I think that will help her avoid peer pressure later as a teenager.

Being that 83% of those with celiac disease are UNDIAGNOSED, what are some ways we can encourage more awareness of the disease and its multiple symptoms?

I have no idea. Even though my husband sees what we do for our daughter, and he's aware of most of the symptoms, treatments, and implications, he still refuses to get himself tested or go on the diet willingly. He sees how we have accommodated to making sure our daughter's food 'fits in' to regular diets, yet he still doesn't want to change his. I don't know how to 'encourage others' when he won't. The information out these is also very overwhelming. It's hard to figure out if my daughter should be just gluten free or grain free or dairy free or nut free or sugar free or egg free or rice free or corn free or soy free or how we'd even begin to accommodate our diets to get all that out and still be able to carry on our lifestyle.

Thank you for sharing Rebecca's story. She looks so very sweet and I love her glasses!

Yes, it's very frustrating, especially when you see something on social media about what other foods those with celiac disease should avoid. I still question things myself - "Should my husband and Jack avoid corn?" "Is popcorn ok?" 

If it were me (just some friendly advice), I would just try to focus on gluten-free foods first and if you see a problem after she's been strictly gluten-free, then I would talk with her doctor about possibly eliminating other foods in her diet. 

When it comes to family and celiac disease, every immediate family member (parent, siblings) should be tested. I hope your husband will come around...because if he possibly has celiac disease, and continues to eat gluten, he will slowly wreck havoc on his body and there won't be a positive outcome. 

Keep up the good work Mom! Teaching our kiddos to embrace celiac disease and taking care of their bodies is the most important thing!

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