First Post Diagnosis Check Up!

My bestest Z

Z had her first post-Celiac check up this month.  It's been a crazy long three months since we went gluten free.  I had some concerns regarding testing.  I had only recently heard of refractory Celiac that doesn't respond to the diet and I can't imagine any worse news for her.  I was also worried that since there is still gluten in the house, maybe we weren't doing a good enough job keeping her gluten free.

In the past months, her symptoms have improved dramatically!  She is still regular without Miralax, doesn't complain of stomach cramping and she also doesn't have constant gas anymore!  Whew - loved writing that sentence.

The only times she has had problems were at two restaurants that we ate at.  The last one cause a reaction that made me nervous enough to contact our pediatric GI doc.  He assured us it would be temporary, but it was a really hard sight to see the pain come back like it did.  In a way, it was good that it happened. A more determined 7 year old I have never seen.  She knows it makes her sick, and she hates feeling that way.  She misses some foods, but enjoys feeling better even more.

The doc says we will test every year to make sure her vitamin and iron levels stay healthy.  The results trickled in over the last week, but she has made great strides!  Her antibodies are below diagnostic levels.  That means, while not at zero, if she took it her first test today, she wouldn't be in the positive range.
Her iron levels went up, iron saturation went up and Vitamin D levels are up.  Everything had been pretty low, so even if they aren't great levels, they are not in the worrisome abnormally low range.  I can't express how gratifying it is to see the hard work and the buckets of money we spent on gluten-free food have been working on the inside too!

I try to imagine myself back at 7 years old.  I imagine being the only one in the my family who can't eat what I want.  I'm the only one who has to sit by while my brother and sister can eat any doughnut they want, while I get whatever flavor the store has in gluten-free.  What it would feel like to know every time someone offered me a treat, to have to say "no"?  Her life is changed.  While I am grateful that she doesn't have a dangerous allergy to a food, like my nephew does to peanuts, I still feel empathy for her and for all kids who have to learn to deal with this kind of life long restriction.  The kind few people know about and fewer people understand.

We are moving on to her one year goals.  I want to see her iron and Vit D up a little more into more healthy ranges.  I want to learn to BAKE gluten free foods without fear of messing up all the time.  I want to find MORE restaurants who willingly take on the challenge of serving gluten free foods.  I want those restaurants to cook well, cook deliciously and do it right!  No cross contamination!  No crappy substitutes that have been shipped frozen half way across the country!  Fresh, healthy and great tasting! Finally, I want to keep my daughter positive about her journey.  She loves that we all eat gluten free, she loves that I write reviews about places to eat, and she loves that I blog recipes that help other families eat yummy stuff like her. 

Our journey is just begun...but we are in it together.  That is what my family is all about.