Describe your life prior to diagnosis:
I’d been very sick since I was a young child, going from doctor to doctor just to be told I had ulcers. But even after treatment my stomach still hurt; never once did I have a pain-free day. I endured hospital stays, gastritis, gastroenteritis, colitis, life support, the ICU—it was honestly just terrible. Every day I would wake up hoping only to be pain free. I tried every stomach medication made, and at one point I was taking four pills daily for my stomach. I’ve had part of my stomach, bowels and intestines removed as well. For many years I was completely miserable.
How did you come to know (or suspect) that you have celiac disease?
I really had no idea what was wrong with me, but I went to see my gastroenterologist and he sent me to get some testing done in the lab. As I’m sitting there looking over the tests he ordered, I became curious and searched the internet for the tests. It said the tests were for celiac disease.
The tests came back positive. He repeated the tests and those also came back as positive.
How long did it take for you to get diagnosed since your first symptoms and what (if any) challenges did you face along the way?
It took from grade school until the age of 44 to be diagnosed.
One of the bigger challenges was that my children have Hashimoto’s thyroiditis, but went years without a diagnosis. Only after my diagnosis of celiac disease did I realize that celiac disease and Hashimoto’s are related. I feel that if I had known about celiac disease earlier, maybe my children could have been diagnosed sooner.
It was also challenging to deal with the constant nausea, vomiting, constipation, diarrhea, gas, swollen belly, fatigue, anemia and the deficiencies it’s caused in my body. People need to be aware of how damaging this can really be.
Do you believe anything could have sped up your diagnosis? If so, please explain:
Honestly, I don’t. I saw so many doctors trying to find out what was wrong with me but it took the right set of eyes to see certain symptoms and know what to test for.
Describe your experience with living with celiac disease:
It’s hard to be honest. I miss normal food, especially breads, and there is so much I’ve had to give up. Then when I do eat, there’s constant worry about cross-contact. It’s hard looking around and seeing everyone eating normal foods that you ate for your entire life but can’t anymore.
Is there anything else you’d like to add to your story?
If you suspect you or your child could have celiac disease, please get tested soon, because if you have it, every time you eat gluten you damage not just your intestines, but other organs in your body.
