Seven years ago my life changed dramatically. I was 18 weeks pregnant with my youngest child and was having very unpleasant GI issues (no one wants to know these details). Luckily, the baby was fine but my doctor told me I most likely was having a reaction to something I was eating, most likely gluten.
To say I was devastated is an understatement. I am someone who has been food obsessed forever, truly. When I was a kid in elementary school I would check cook books out of the school library and go home to make recipes instead of the “normal” story books my peers were checking out. So being told that I could not have gluten was tough to accept.
I was given some hope that perhaps my intolerance would go away after I delivered my child. I held onto this hope for the next 22 weeks and a few months postpartum. Since I am writing this, you know how that went. I tried really hard to eat gluten again, hoping it would magically work in my GI system but it never did. Rather, my reactions got worse over time and I became increasingly sensitive to exposure.
After a year or so I finally saw a GI specialist who was very thoughtful in his approach to my case. Since I was pregnant when I began having symptoms I did not do an endoscopy (typical for someone where they suspect Celiac). And now I was 12+ months gluten free so my blood work would not show typical elevations for someone with untreated Celiac.
My physician recognized my symptoms and experience as Celiac, and decided to confirm via genetic testing Celiac genes rather than having me do a gluten challenge. (returning to eating gluten to get a positive blood result with a follow up endoscopy) After a positive genetic test I was given my official Celiac diagnosis. While this did not change a whole lot for me, I will say it did make me feel validated in what I was experiencing.
The learning curve for me was steep and I am still learning today. I am continually baffled at the random things gluten exists in. I hate it when I am exposed and the next 3-4 days I feel horrible. I frequently think how much easier it would be if I could just eat whatever I wanted.
This is not my reality and that is ok. It has taken a lot of time to fully accept living with Celiac and the physical and mental burdens that come with the disease. If you are on this journey I hope you find some solace in knowing you are not alone.