It’s funny that you could be happy your child has a gene that puts them at risk for a disease. But we are. Certainly we aren’t happy that either of our children have something that makes life hard, but at least we feel like our gut instincts with Ada are right and we are getting some answers.
Yesterday at her first appointment with an allergist at Duke, we found out that Ada does have the DQ2 gene, which puts her at a higher risk for celiac disease. She also had elevated liver numbers, which could be a sign, but they have to draw blood again to double check, and luckily the allergist didn’t want to do that. Ada had a rough enough time these days at it is, we’ll check the blood again in 2 months.
Actually, he didn’t want to any blood work or skin testing. He listened to our whole story, really listened to it, and was with us for nearly 2 hours. None of her symptoms seem to suggest that she has “true” allergies, meaning that her immune system is provoked. Those are the allergies that can provoke anaphylaxis.
That doesn’t mean it is any less serious for her to avoid the foods that cause her trouble, probably for her entire life, because celiac disease and gluten intolerance are the kind of food issues that cause lifelong misery, even if it doesn’t get you quickly.
Rather than type it all over again, I’m just going to copy and paste my summary of the appointment that I posted on a discussion group called Foodlab where several moms know me and Ada’s story:
The allergist feels that her issues are most likely cause by gluten. We showed him the small dots on her back, there was one left from a reaction last week, and he said it was interesting and he’d never seen it, but in a thoughtful, sincere way… not a “well that’s not allergies, you are overreacting, crazy lady” way. He thinks its probably due to the gluten as well, since there are skin issues for some celiacs.
He was quite surprised at our story and the “red ring” and diaper free baby aspect of what first clued us in, but very, very cool about it. When I said I cut gluten out on gut instinct he was pretty surprised.
He feels that because of her symptoms, it sounds more like gluten and that she has no true allergies to any of the foods I cut out. We discussed trace gluten and how it could be why legumes and corn and all this other stuff causes small reactions in her, but nothing like when I ate straight gluten. He didn’t say “oh yes, trace gluten is it.” But he said that our theory sounds incredibly plausible and even seemed to sincerely be learning from our situation.
If it’s not trace gluten, he said perhaps she has a secondary gut issue that the GI doc can help us figure out.
We told him how she always throws up chicken but not lamb or beef, and he wonders, as we do, if she’s so sensitive to gluten her gut is just having a hard time dealing with certain foods.
He said she may react to some food chemicals, which explains the red spots from raspberry and avocado, but did not dismiss it or the reasons we cut them out. He just was great about explaining the differences between different types of food reactions.
I told him I thought I had an egg allergy because they give me migraines, and he said that a true allergy should have an immediate response, but that certainly foods trigger symptoms in people that aren’t IgE mediated. He didn’t dismiss anything at all, but just explained it and his reasons for not thinking we have “true” allergies. And the thing is, true allergy, intolerance or whatever you call it, when a food hurts your body, you shouldn’t eat it.
And there are I think 5 or 6 different types of antibodies, IgE, IgG, IgA and etc. I wonder if because IgG and IgE can be tested for, doesn’t mean the delayed responses and food triggers and thigs like that aren’t affecting the immune system too.
He thinks we should introduce each food we’ve cut out, one a week since Ada’s symptoms are delayed gastro type stuff, and intro them to her, and then after the week I can eat them too (oh sweet rice and potatoes and berries here I come!)
Y’all should have seen his face when I told him that I’ve gained weight on this crazy elimination diet. He definitely seemed to think she gets the celiac gene from me! And he thinks I should get an endoscopy too!
So with the scope issue, the GI doctor left him a note that she knows I am against feeding Ada gluten before the endoscopy but she thinks it’s a good idea. He said he won’t tell us either way, but shared his thoughts on it.
First, since she is finally gaining weight and doing well, so we might not want to mess with that. I told him this was my opinion. But then he said, if treatment sooner rather than later would help, we might want to diagnose sooner rather than later.
I told him that our thing is that either way we aren’t going to change our treatment—we aren’t going to feed her gluten. And we want to see from the scope if there is damage from trace gluten or something else, not from gluten, because we know in our hearts that’s the issue. He seemed to think it made sense. So we’ll see the GI doc in 2 months and tell her that.