Wednesday, September 09, 2009

Celiac Disease

A couple or three weeks ago we got a diagnosis for our 10 yr-old daughter, Allison. She's always been amazingly skinny and we thought it was some combination of genetics that she had six pack abs in preschool (my wife would still be within ten lbs. of her high school cross country weight if she weren't pregnant and I graduated HS at 6'5" and 165 lbs). She's strong and seemingly healthy, just skinny. We have asked her doctor if she were too skinny before but they just pushed us off. Too many obese kids out there to deal with I guess. Kim had taken her in for a different issue (a slight scoliosis) and the Nurse Practitioner had noticed a bruise on her arm and asked if she could run some blood tests. Kim had thought that she might show up as anemic but instead she came back positive for Celiac Disease. I'd go on about what it is and what it does, but instead I provided a handy link. Go ahead, click on it. I don't mind waiting.
So you back yet? Malnutrition. Yeah, I think all parents want to hear that attributed to their child. So then we noticed that our skinny daughter also had pale skin and dark circles under her eyes and while she could do more dips and could hold a plank position longer than any of the other kids, she got winded easily. OK, so we have to go gluten-free now. My first response was that we would all do it. I didn't want to create a "gluten-free" zone at the dinner table and I didn't want Ally to feel marginalized. On top of it, I discovered that we would have to get a second set of kitchen tools just to make sure that the gluten-free stuff doesn't become contaminated. That's the rub, it only takes a little bit of gluten to go a long way with Celiac Disease. It's can't just be about reducing the amount of gluten, you have to get rid of all of it. Just cooking some Malt-o-Meal next to her gluten-free oatmeal can mean that she gets malnourished for the next week or so. Yuck.
So since then, we've gotten confirmation (via a biopsy) that she does have Celiac Disease. We've started buying and eating gluten-free food. We've stopped making food with gluten in it and I think we'll be giving away the last of that Bisquick in the pantry sometime soon. I decided that I'd blog about it a bit. I'll be reviewing the foods that we try as well. It might get me blogging regularly again.


Sonia Gluten Free said...

Dear friend.
My name is Sonia, I have a granddaughter celiac six years.

If celiac disease may go unnoticed, you must be very careful, and be tested every first generation relatives, ie parents and siblings.

Is a genetic disease, if a celiac in the family can have more!

At home are five of the positive genetic celiac disease but only the child has developed further.

Do not forget that there are about 80% of undiagnosed celiac disease patients, doctors, are already warning of this.

It is necessary that governments and associations of celiac, mentality and apply it more widely in this chronic disease on society, cracion medical protocols, gluten-free menus in schools, in workplaces ...

From diagnosis to my granddaughter, working firmly in the spread of this disease, I shall claim laws for the community.

In the network, we have many cooking blogs, all wonderful, but it seems that no matter the location of celiac too out of his house in there is the problem.
Your daughter, would improve with a gluten free diet, is the advantage of diagnosis in children, do so with the diagnoses in adults, sometimes, the damage caused by malnutrition, is irreparable.

Thank you very much for your blog and spread the celiac enfemedad.

a greeting with affection
sonia gluten free

Don said...

Bull, be sure to let your parish priest/office/liturgy person know about this. There are gluten-free hosts available. Parishes don't always have them on hand, but if they know they have a need in their community, they should stock them.

bullschuck said...

Actually, I'm already on that one. The policy at our parish is that we supply the hosts and we buy a pix. Each week we'll put one host in a pix and place it behind the altar with the other pixes (sp?). I already had a line on low-gluten hosts (one of the sisters who developed it is an Aggie and someone who I knew in school) so I think we're going to be alright. When I mentioned it to the priest he already had the policy right off the top of his head. Our daughter isn't the only Celiac in the parish.