Celiac disease is a scary diagnosis and many people initially feel overwhelmed, confused, uninformed, and alone. There are so many people, including some medical practitioners, who do not understand celiac,…
My Story
When I was pregnant with my third child in 2011, I was pretty ill throughout and remained sick after giving birth. My OBGYN dismissed my post- pregnancy symptoms as hormone imbalances. But I was so sick and exhausted that I could barely get out of bed and knew something was wrong. I sought out a homeopathic doctor and she said I should eliminate gluten and dairy to see if my symptoms subside. I followed her advice, but I was still feeling like I had a chronic stomach bug and losing weight without trying. Someone told me about an alternative doctor who I then went to see and tried a billion supplements to help my health. Long story short, for seven years, I bounced from doctor to doctor in every facet of healthcare and no one could put together the celiac piece. I’ll never forget the gastroenterologist who dismissed me as ‘just an exhausted young mother with three kids!’ He even did a celiac test on me while I was already off gluten for over a year. I did not know then what I do now, but he should have known!! I did have a lot of good physicians along the way, and I realize many did not now much at all about celiac. So I started reading and researching to find my own answers. In the back of my mind, the celiac diagnosis made sense based on my symptoms, but since I was told by so many doctors, and 2 negative tests, that I did not have it, I figured it must be something else.
In 2018, a new functional practice had opened in Charlotte, so I decided to try a new doctor. By this time, I had at least a dozen seemingly random issues. I was still exhausted, had a lot of digestive trouble, rashes, itchy skin, and also extreme muscle pain. My new doctor did a celiac antibody test, which came back positive even though I was “gluten free” for seven years! I thought I was pretty vigilant about my diet, but some was obviously, and thankfully, sneaking in! She recommended an endoscopy and colonoscopy, and also sent me to a rheumatologist for the muscle pain. Turns out I had fibromyalgia also. After running more bloodwork, she found extremely low ferritin levels, for which I needed iron infusions, a thyroid issue, and vitamin deficiencies. This is all common with celiac disease.
I had read a lot about celiac and autoimmune by this time, but I still felt sadness along with the relief of having a diagnosis. Maybe there was a glimmer of hope that I could eat normal again or not worry about what I am ingesting. That was gone in a phone call. I had chronic illnesses that would not just go away. I had to make even more drastic lifestyle changes.
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