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
The cookies.
Cupcakes.
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
Bloating- gone
Nausea- gone
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.
Then, this past April, this happened. The diagnosis out of that is Hashimoto’s.
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.
Well. No.
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.
This is very interesting; my 20 year-old daughter seems to have many similar symptoms and we have been wondering how we can help her. Do you have any further knowledge of why people of Irish heritage (which we are) are more affected? I’m just curious as to why that would be true.
This sounds like me, Jen. The brain fog. The instant narcolepsy after toast for breakfast. I’m serious…. xo
Have you looked into anything?
I just want to point out that there is a big difference between being gluten sensitive (which you definitely are) and having Celiac. If it is Celiac, it is a disease and there can be serious repurcussions to exposure/cross contamination, far beyond just not feeling well. I think it is wise to avoid gluten (unless you are going to do the test) and discuss your options further with the doctor about getting a definitive diagnosis. I am sorry that you have to go through all of this.
That sucks! When I went to the gastro doc, he went straight to the endoscopy and that came back negative. But I had also been eating mostly gluten free for a while. Years later I had some blood work done which showed no sensitivity either. But sometimes I swear it bothers me when I eat it. It is just so frustrating to not have something concrete to point at and say “yep, this is definitely it!” if you are going to make a major change like that.
From what you have described, personally I think you definitely have Celiac. I can see why the anitbodies wouldn’t show up the way you have been eating for the last year. They could do the endoscopy now and probably see nothing. You could suffer for 3 months to get concrete proof and I’m sure there is a chance it could still result as negative but what would you do if it did? It seems like experience shows you are Celiac and the test is just the final nail in the donut’s coffin but you are handy enough to nail that in yourself without going through the pain :)
I was diagnosed with a wheat allergy (I’d get hives) about 1.5 yrs ago and it was the best thing that ever happened to me. I lost 35 lbs, lost the damn brain fog, stopped having insomnia and my ridiculously heavy lady business settled the freak down. I’ve never been calmer or happier since giving it up. I say tell the endo dr to stick the 3 mos where the sun don’t shine. Why do you have to be miserable so they can have an official test? Can’t they just take your word for it?
It was the Celiac Center that said the 3 months. I came back neg for a wheat allergy that my reg Dr. ordered. I guess I could just assume that I have issues with it based on my own reactions to it. I can eat just about any foods and have no reaction. I eat a piece of regular bread and 30 minutes later I have brain coma, indigestion, bloating, and general offness. That means something even if I\’m not full blown Celiac based on antibody tests.
I’m not sure I understand what a .5 gene is. To my understanding, celiac genes are hla-dq 2.5 or hla-dq 8. Does this mean that maybe you have half of 2.5? If so, your chances of having celiac are very low. Maybe you have some type of gluten sensitivity. At any rate, I’m sorry you don’t feel well when you eat gluten. Did the big wig doctors do an upper endoscopy? I hope so because sometimes damage is present even when antibody tests are negative.
Hmm. I\’m not sure. They just said that one of my parents carried it. They are sending the reports to me. They said that they would do an endoscopy based on a positive antibody test. I\’m feeling more on the side of not taking the \”gluten challenge\” because if I don\’t have the antibodies currently, that\’s the goal right? The antibodies would indicate that my body was attacking itself and I what I have been doing either A) Worked in reducing the antibodies that I did have or B) I didn\’t have the antibodies but maybe what I\”m experiencing now is like \”Warning, you feel miserable when eating gluten because you\’re about to go full blown Celiac.\” Either way I\’m not sure I feel like adding logs to that fire. I\’m listening to my body and the signs are telling me not to eat it. I\’ll reply to your comment again once I have the gene results.
Ugg. I am so sorry you are going through this. what a PITA. and gut. and head. and heart. Crossing my fingers the endo can get to the bottom of it without having to torture you for 3 months.
I’m so sorry! I don’t know what to do on my end either. Alexa’s test results just came in today. All negative, though we didn’t have the genetic test ran so I’m not sure if we’re carriers (guess I should?). I feel semi crazy for still wanting to pursue it.
Can you skip the 3 month torture and get the endoscopy?
I have friend that tested just the same & decided it wasn’t worth it to feel like crap for 3 months just to confirm what she feels she already knows. Hashimoto’s is also the cause of my thyroid problems. Hopefully your endo will be willing to treat it with the assumption of, yes, you have celiacs. I can’t imagine having to go through all that for a confirmation. Hang in there!
But if you have it, it could be your last big to-do with all things gluten. It would totally suck, totally totally totally. But you could make a list from now until January of all the foods you need to get in while you can. :(