How to meet other gluten-free moms IRL
Lurk in the gluten-free section of your grocery store!! 😀
Just kidding. Sort of.
I wasn’t lurking, but at the grocery store, late last night, I was passing by the g.f. section, and saw the telltale signs of a mom with a package of Bob’s Red Mill g.f. Chocolate Chip Cookie Mix in one hand, another g.f. product in the other hand, and a pensive look on her face, slowly considering what was on the shelf in front of her, reading labels. My thought: “Bet that’s a new g.f. mom.” And, I was right!
I had a fantastic conversation with the lady, named Kari Beth. We literally shared a couple of tears and a hug over the stories of our sons. Her 3yo son was only diagnosed a month ago, but she’s already read tons of books (“I think I know more than my pediatrician, now!” and she’s probably right!), investigated online resources, found local resources, called companies for g.f. lists, found g.f. restaurants, and more. In short, she’s done what sounds like a great job of making the switch.
Very cool. But, very sad.
I SO SO SO wish that the U.S. had a mandatory screening program for celiac disease. There are tests done for much more rare disorders; it wouldn’t be that much of a stretch to test for one more — much more common — disorder. It would so greatly reduce the number of heartwrenching stories and guilt-laden reflections by mothers who realize that their child was so sick, and that she was unintentionally doing things that made it worse. It would so greatly reduce the number of children who go through months or years of terribly ill health, only to find out that the fix — though difficult, at times, in its implementation — is shockingly simple.
Posted on November 21, 2007, in Celiac Disease, Friendships, Medical Stuff, Motherhood, Parenting, Sad Things, Shopping, The Kids. Bookmark the permalink. 3 Comments.
Only Sometimes Clever 
Sounds providential to me!
How do they check for celiac disease? Is there only the one way – endoscopy?
Well… I’m thinking that, with babies, they could do the genetic screen; they have isolated the gene that causes CD.
Adults are rarely tested for the gene; because of CD’s odd nature, people *can* have the gene, yet not have any symptoms. It’s know as being autosomal dominant with incomplete penetration. Meaning, if one has a dominant gene, you’re supposed to have that trait. But, for currently-unknown reasons, not everyone who has the gene “has” celiac disease, or, rather, they technically may have it, but they are asymptomatic.
BUT, if you have the gene, even if you are currently displaying NO symptoms, they could “spontaneously” kick in at ANY time in life, making it appear that you suddenly “contracted” it.
That’s what makes it so difficult to catch. Some people have MASSIVE symptoms from infancy, others don’t “get” it until their 40s or 50s, though it’s usually earlier than that.
But, with babies, the parents could at least be educated as to what CD is, and how to handle it. They’d know, “OK. My baby has this gene. I need to be aware that the symptoms of CD could appear at any time” even though they *may* not.
In adults, it’s often “triggered” with stressful events, like pregnancy, a death in the family, or personal turmoil.
But the weird thing is, even those who don’t “trigger” until adulthood, technically, they’ve had it all their lives.
So, yes, people who have been living on a regular, gluten-containing diet are usually given a blood test (which actually tests for antibodies, which the body usually produces, even though CD is NOT an allergy), and then an endoscopy.
An endoscopy will come back clean, even if a patient HAS celiac disease, if they’ve been on a g.f. diet.
So, in my book, it makes more sense to test babies for the gene, and at least be aware that the parent will likely need to put the child on a g.f. diet. I think it would be wise for ANYone w/ the gene to be on a g.f. diet, even if they’re not currently symptomatic.
Hope that makes sense.
Well, as it’s the genetic test you are requesting I’d say that money is the only thing preventing it. I learned that from when we had to have our second get the RSV shots. All babies who are released from the NICU must have it their first winter. It was a real headache to get it even though it IS required because each shot is $900 (this was nearly 6 years ago). I have had friends whose healthy children got RSV & nearly died, one whose son did die, but they will never make the RSV shot mandatory among vaccinations because the insurance companies will fight it tooth and nail. I just don’t buy the “most kids get RSV and are fine” argument because most kids get Chicken Pox and are fine but the vaccine is now required.