I carry the gene.
The gene being the celiac gene. Technically I carry .5 of the gene which means one of my parents have it and passed it to me. If I had to guess, it’s my Mom’s side of the family since Celiac runs disproportionately in people of Irish decent and my mom has had “digestive issues” my whole life.
Let’s go back a bit.
After I had my 2nd child I noticed that I just didn’t feel good after I ate pasta. It was bad enough that I just thought “FINE UNIVERSE, I just won’t eat it”
Then I noticed that I got that same feeling when eating bread.
Ok, universe, why do you hate me?
I then cut bread way, way down.
And then went the cake
Baked morning goods.
And finally, my precious donuts were the last to leave the list after I was sick for 3 days after eating one.
Last spring I decided to really make an effort to cut down what I perceived to be wheat products from my life to see if it would help with my horrendous seasonal allergies.
People? I can say what happened next was life changing.
Leg cramps- gone
Heart palpitations- (that I’d seen 2 cardiologists for) lessoned to maybe once a week versus daily
Extreme Fog Coma brain- gone
Oh, and those Allergy medications that I would LIVE on from March through June?
I think I took 3 all season.
What in the hell was going on here.
Hashimoto’s and Celiac happen to be linked in a “Hey let’s be friends and make this person miserable” sort of way. They are also both genetically passed down.
My endocrinologist then insisted that I get tested for Celiac since if I do have it, managing the Hashimoto’s with meds becomes much more difficult.
She sends me to one of the best places in the country: The Celiac Center at the University of Chicago.
There, they not only do the extensive blood antibody tests that a general practicing doctor might not do, but also genetic testing to see if you carry the gene.
Basically, if you have the gene it doesn’t guarantee that you have Celiac but you are at risk for it to “kick on” at any point in your life.
So then I must have Celiac then right? I have all the signs, I have the gene.
The verdict is unclear. All the antibody tests came back negative. (edit: I did have antibodies, just not to the level where they would diagnose)
Why? Because I had already been on a really, really, limited gluten diet for over a year.
My digestive system has already started to heal itself.
The Dr. said that if I want clarification then I need to eat gluten consistently EVERY DAY for 3 months for the tests to be accurate.
So you think “Ok then, just do that”
Well. It’s not as easy as you might think. I get sick when I eat it. Sick to the point where after that last donut I could not form thoughts and had to just lay down to not feel sick for 3 days with heart palpitations that are not only uncomfortable, but sort of nerve wracking. I took a bite of my son’s birthday brownies and I had stomach cramps for 2 hours. Even if I don’t have full blown Celiac right now, I have become so sensitive to it that I just cannot imagine having to eat it daily for 3 months. I just don’t know if I can live like that. It also puts stress on my family when I eat it as well because, hello irritable as hell.
But then there’s the fact that I have Hashimoto’s. That is a firm diagnosis and that Dr. really seemed to stress that I need to know if these 2 auto immune diseases are being BFF’s in my system or not.
And then I have children. I have suspected that my younger son reacted to gluten since he started eating solids at 6 months. Obviously my genes get passed to them. I should find out for them.
I could just live my life as though I have it, my kids have it, and well, goodbye donutland but that is a major lifestyle change that would need to take place and without a firm diagnosis, it could be for nothing.
I just don’t know what to do. I’m trying to think of what 3 months of the year that I could do this for.
July/Aug/Sept– goodbye rest of summer fun or getting anything done at all.
Oct/Nov/Dec– Um, I think we know I’m not even going to risk Halloween at all. Sorry, gluten, you don’t get that.
Jan/Feb/March– Seems like the best possibility at this point. I have volunteer/fundraising commitments that start during this time but I think I could still do them while eating gluten.
I have another Endocrinologist appointment next month. Maybe she has some of her own opinions on how quickly I need to react to this.
Until then, wheat out.