It's Not In My Head
Most of us know what it’s like to be sick. Most of us with celiac know what it’s like to be sick and to have doctors look at us like it’s all in our heads. And this can often last for YEARS! (For me, it took decades before I could say, “It’s not in my head!”)
How many of us have wanted to scream, “It’s not in my head!”
Angela was 40 when she became suddenly and intensely ill. She was so sick that she lost 40 pounds in just 6 weeks. She had to take a medical leave from work. Vomiting. Diarrhea. No appetite. Dizziness. Anxiety. Tremors. Constant nausea. Severe headaches.
These symptoms were very real, but she was told they were all connected to anxiety.
Angela found herself in the ER nine times in two months. She also visited her primary care physician three times. The answers she was given: Stomach virus. Anxiety.
"I thought I was dying."
When she told her doctor she couldn’t keep anything down, guess what he told her to eat? Toast.
I can only imagine how fearful she must have been to be so sick, and how frustrated she must have been over the lack of answers. “I thought I was dying,” she shared.
A Test ~ An Answer
At her ninth visit to the ER, Angela was finally sent to a gastroenterologist. This specialist, however, also made her feel that her symptoms were in her head.
Could this be one reason why SO MANY of those with celiac are still un-diagnosed?! I will never understand why there remains such a lack of education about one of the most common genetic autoimmune diseases.
According to Angela, he “begrudgingly set up an upper endoscopy and lab work.”
Why is it so hard to get a test? I hear this all.the.time, and every single time, I fail to understand it.
But lab work and a biopsy provided Angela with an answer. Both were positive for celiac. The doctor was surprised.
A Possible Upside
I like to see silver linings. Maybe Angela’s diagnosis has increased her doctor’s awareness and understanding of celiac disease. He was, after all, surprised by the test results. Yes, I’m an optimist. We can hope that he now tests for celiac more often.
What Triggered The Onset Of Celiac?
“My doctors now think an injection I received in late July triggered my celiac,” Angela shared.
She experienced a severe reaction to an immunotherapy injection that she received from her dermatologist. Her GI symptoms started after this injection. She had no GI issues prior to this particular medication. Prior to getting so sick, “Everyone laughed that I had an iron stomach and could eat anything,” she shared.
Other Autoimmune Diseases
Nope, many of us can’t have just one autoimmune disease. Twelve years prior to her celiac diagnosis, Angela discovered she had Graves disease, an autoimmune disorder that causes an overactive thyroid. It is not uncommon to have thyroid disease and celiac disease.
Post celiac diagnosis, Angela also discovered she had reactive hypoglycemia. I had to look that up. I didn’t know what that was. According to this article from Mayo Clinic, “Reactive hypoglycemia refers to low blood sugar that occurs after a meal — usually within four hours after eating.”
The reactive hypoglycemia was much worse right after she was diagnosed with celiac but has greatly improved after being gluten free for six months.
Six Months Gluten Free
Angela has been gluten free for six months. All those horrible symptoms are gone (unless she accidentally gets gluten). But she is very careful. And the proof is in the pudding. “My antibody levels have gone from 186 to 5 in six months of being gluten free.”