Celiacs- Getting Diagnosed/The Long and Winding Road

Dealing with any autoimmune problem can be puzzling when going through the process of getting diagnosed. At times it can feel like we are finding our way through a maze that keeps changing or putting together a jigsaw puzzle with hundreds of pieces..


Of course I am not a doctor, and I don’t play one on TV, but I do have experience from the patients point of view, which if you are reading this, perhaps you are wondering if Celiacs is an issue for you.


I have been through the maze of diagnosis twice for autoimmune issues. The first was hypothyroid in the 1990s and the second of course was for Celiacs. I think there are two crucial things for getting the diagnosis, 1- communicate with your doctor as a team working together, and 2- be your own advocate.

As I think back over the years, I think I had Celiacs for a long time, but the symptoms were not so severe. If I had GI tract problems, I figured it was because I was a bad cook, which I really am. The symptoms were becoming alarming for me in the fall of 2016 and even more so in the winter of 2017. I began having night sweats, my knees were swollen, I had rashes  or spots all over my body, I was fatigued etc etc.

One night I had leg pain so severe, it felt like I had a fracture or something, so I went to the ER. They told me I had shin splints and it felt like they thought it was in my head. I have had shin splints before, so I knew that wasn’t it.

2 weeks later my other leg started turning red and got all puffy while I was teaching my evening class. It got the point that I thought my leg would pop. I went to the ER after class, and they told me I had dermatitis and gave me antibiotics.

I went to my GP and told him I thought I needed to go to a rheumatologist. I have two siblings with psoriatic arthritis, so I thought the skin rashes and joint pain pointed to that. He told me I didn’t have psoriatic arthritis, but he did x-ray my knee and told me I need to see an orthopedic specialist. I asked why I have pain everywhere if I did not have psoriatic arthritis. He suggested let’s start with the ortho doc. By this point I felt like screaming- I AM NOT CRAZY!!! I HAVE PAIN EVERYWHERE!!! But I didn’t yell.


The ortho doc told me I didn’t need knee replacement yet, but we needed to find out what was causing my pain. He referred me to a rheumatologist.


At the rheumatologist, she listened to me for about a half hour or more asking questions and then told me to just talk. When I said, “I don’t know why when I eat Triscuits my feet swell up. It happened in May, so I wondered if it was the sodium, but I ate a lot of potato chips and nothing happened, then I ate Triscuits again, and my feet swelled up again. (Please understand I am not against Triscuits and if i didn’t have Celiacs would still eat them today). When I said that, she looked up from her laptop at me, paused, and then entered something in her laptop.

She ordered up tests. I had almost everything except my hair x-rayed. I had five vials of blood drawn for several blood tests. She also sent me to a dermatologist to be checked for psoriasis where they did a biopsy. By the time all was finished this was what I felt like.


But I am SO GLAD she had me go through all of the tests BECAUSE autoimmune is a complex issue. There are many issues that can mimic each other. We as patients have to be patient, play on word intended, in the process of getting the diagnosis. On July 31st, I had the call from the rheumatologist’s office letting me know I had tested postive for Celiacs from the Tissue Transglutaminase Antibodies (tTGIgA) test.

I had the answer. It wasn’t what I was expecting. But enduring the labyrinth of doctors, 7 of them, tests- MANY TESTS, I had the answer.

SO- Please communicate with your doctor. Even small things we say can tell a doctor a lot such as when I told the rheumatologist about my feet swelling but only when I ate Triscuits. Keep track of and write down your symptoms so you don’t forget things when you are at the doctor’s office.

ALSO- Be your own advocate. Don’t be afraid to ask questions and to ask to be referred.

After all, it is your body and your life!!!



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