My Celiac Disease Diagnosis Story

May is celiac disease awareness month. I thought it was the perfect time to share my story.

When I thought of celiac disease, I thought people were diagnosed when they were little and live with it just fine. That isn't my case. Let's go back a few years where my story really began.

2010

I was 19 going on 20 this year and everything was fine. But, one day my body did a complete 180 overnight. I was struggling with stomach aches, nausea, headaches and body aches. I did not know what was going on. At first I just assumed I was getting sick. (Like most people would.) Days and weeks went by and nothing changed. I reached out to my doctor, thinking I had an infection of some sort. They prescribed me an antibiotic and that was it. It didn't work.

I struggled with these side effects for months. MONTHS. No one believed me. Every person I talked to or doctor I saw that I was crazy and making it up. (Who could blame them. It is an invisible illness!) So I lived with it. I lived with the pain because maybe it was in my head.

2012

Things had not changed. I was still getting sick. Anxiety and depression was getting worse and I felt alone. Thank God I had an amazing boyfriend/soon to be husband that supported me and helped me any way that he could. I was still in pain and having issues after almost every meal. My mother-in-law suggested that I go see her doctor because they help with chronic illness and things along those lines. I figured it couldn't hurt.

I scheduled an appointment with this new doctor and was anxiously waiting for the day to come. Would she believe me? Would she find something wrong? Would I finally have an answer for my pain? The short answer is NO.

I went to the appointment, she checked me over, ran blood tests and that was it. A few days later I went back to go over my results. She said my b12 was low, I was anemic and my thyroid wasn't doing its job. She prescribed me medication to help all that with hopes that is why I was hurting. I stayed on this regimen of medications for years. YEARS. My pain wasn't coming from these problems, it was something else.

2014

I still couldn't believe I was living in pain everyday and no one believed me. My doctor and I had talked about everything. Gluten intolerance, lactose intolerance, GI issues, constipation, EVERYTHING. She did not think it was any of those things. So now what?

No doctor had an answer, no family had ideas and I was just burnt out. This was my life now. Pain, stomach issues, nausea and more. No one knew how to help. It must of just been in my head all along.

2015

Life was moving in fast forward and I was still struggling. I had been to my doctor over the last year and nothing had changed. No new answers with blood work, all my numbers were just fine. Except I wasn't. I knew something was wrong. I KNEW IT. My heart and head knew that this wasn't in my head, I was NOT making this pain up. (I mean, who would do that?) I told my doctor that I was going to do some extra digging. Yes, I turned to the internet for answers my doctor did not have.

But guess what. I found some possible ideas of what could be causing this side effects. Downsizing my issues, I found gluten sensitivity and celiac disease. Man, that sucked. I looked back on all the times that I wasn't feeling well and realized this could be it. Why hadn't my doctor just tested me when we were talking about it years ago?

I called my doctor and asked for an appointment. It was time to just see what the test said. If it was negative, we had something to cross off the list. If it was positive, I would finally have an answer.

A few weeks went by and it was time for my appointment. I asked her to just test me and we would know for sure or not. She was hesitant but I knew I needed to fight for my health. So she tested me and told me she would set up an appointment to go over the results in a few weeks.

March 17, 2016

The day had come. It was time to see if my guess of having a gluten sensitivity was correct.

I saw my doctor and one of the first things she said to my was, "I am sorry. I should have just ran the test years ago." So I was right. I had an answer to my pain. I WASN'T CRAZY! I was hoping it was just a sensitivity, not celiac. But my doctor let me know that my numbers were crazy high and that it was celiac disease. She went over the logistics of what it meant and referred me to a GI specialist to confirm with an endoscopy.

May/June 2016

Living in a small town with minimal celiac/GI specialists makes it hard to find an appointment quickly. I got an appointment and met with my new doctor. To say I was nervous was an understatement. I was scared. I did not know the ins and outs of my stomach like this doctor did. He went over my paperwork and agreed with my personal doctor that I had celiac disease. We scheduled my endoscopy and endoscopy for the following week.

I did all of the prep work for the scopes and the insides of my small intestines were a wreck. (As it would be having diagnosed celiac.) I have spent the last three years healing my body from the inside out. It has been a long process but I am glad to have an answer.

Fight for your health, no one else will.