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When I Was Told My Celiac Symptoms Were All in My Head

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It had been over a year since I had talked to anyone about my stomach issues, and here I was yet again battling severe pain caused by cycles of days without going to the restroom swinging towards extreme urgency. It was like my intestines refused to let anything move through until it just couldn’t take it anymore, causing me to set up a cot next to the toilet and claim the bathroom as my new home.

According to the doctors I had seen, it was “just IBS.” They told me it was from poor lifestyle choices and stress. The way to treat it was through yoga, meditation and a better diet. Because I am overweight, food and exercise were always to blame from the perspective of physicians, despite being a very active child and adult who had tried every single diet out there and developing an unhealthy relationship with food because of it.

They convinced me that it was the result of personal choice, and therefore was my own fault. At times they even convinced me these symptoms didn’t exist at all, and it was all in my head.

What made this time different was the blood. I had always had blood every so often, but suddenly I had it all the time! At first, I thought, “There is no way this is all in my head!” Their psychological conditioning was doing its job, and I was trying to convince myself that I was just being dramatic even as I drove to the ER.

I have constant pain in my lower abdomen just below my belly button, with a really specific tender point on the right side. I told the doctor this, and do you know what they did with that information? They ordered an ultrasound to check my gallbladder, which is up near my ribs! Needless to say, they found nothing wrong with my gallbladder, and although my hemoglobin, RBC and WBC count were high, they concluded that I was fine and it was just a bacterial infection.

At this point, I was fuming. Was internal bleeding still not enough to get someone’s attention? In the past, this would be the point in the story where I gave up and resigned to crawl back into the undiagnosed chronic illness closet, but bleeding from the inside kept me from throwing in the towel.

I made an appointment with a gastroenterologist, who checked me for celiac. I finally got an indisputably positive diagnostic test. The feeling of sheer relief to have a positive blood test is indescribable. It frankly seems ridiculous, but to someone who has been told their own suffering was made up in their head, this was proof it wasn’t!

A biopsy is required to confirm the diagnosis, even though the use of it at all is highly disputed. I am waiting for my biopsy results, but in the meantime, I asked my functional medicine doctor to order an additional celiac screener through another lab vendor. I wanted to rule out the chance that the first test was incorrectly positive, which was the GI doctor’s initial reservations when we went over my bloodwork. The second test was positive too, making the likelihood of a false positive test nearly non-existent.

I finally had enough confirmation that celiac has been my issue all along.

Not only does it answer the stomach issues, but that weight issue that doctors were so distracted by? It answers that too. The fatigue? Check! Low leptin? Check! High levels of alpha and gamma antibodies? Check! The fact that I am really short? Check! All of those enemas I had to do as a toddler to go to the bathroom? Check! PCOS? Hypothyroidism? ADHD? Check, check and check!

My gastroenterologist may try to convince me the two tests were both wrong if my biopsy is negative, but does that matter? The only treatment for celiac is a gluten-free diet, and people who are “potential” celiac patients, meaning they have a positive blood test but negative biopsy, get better by removing gluten too. The weight of my doctor’s dismissive words just don’t have the power they used to, and I now know what is wrong and how to fix it with or without their help.

For a chronically ignored and undiagnosed patient, this is the type of validation that comes after years of irreversible loneliness and desperation. It took me 27 years.

It shouldn’t take internal bleeding for you to get the care and acknowledgment you deserve. Don’t ever let someone convince you it’s all in your head or that you are causing your own suffering.

This story originally appeared on Full Medical Alchemist.

Getty image by Nensuria.

Originally published: April 6, 2020
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