Was it all Celiac to begin with?

The earliest potential Celiac symptoms I remember began when I was 12. The first time a doctor suggested that I go gluten-free I was 32. Hmm. A bit of a problem there?

I went to the doctor for the extreme constipation I had as a child. I drank a lot of disgusting prune juice and still had rare, difficult, painful poops. Eventually that seemed to resolve itself. End of discussion.

A year or so later I had unexplained joint pain. I was told it was tendonitis for a long time but even the doctors had to admit that didn’t seem to fit the type of pain I had. I was told to wear braces on my wrists. The pain came and went. They didn’t know what else to do. I spent many years trying to figure out this pain but as far as they were concerned, the discussion was over.

As a teen I had horrible stomach pains, nausea, and diarrhea but had no idea how abnormal this was and told no one for several years. Eventually I did talk to a doctor. I asked to be tested for lactose intolerance. I was told there was no such test (a lie!) Instead, the doctor told me to keep a food and symptom journal. After a few weeks I gave him my notes. He told me that he showed it to a nutritionist and that it wasn’t lactose intolerance. End of discussion. No further examination of my obvious problems. A few years after that I was diagnosed with irritable bowel syndrome. I did some research and saw that my symptoms didn’t quite align with IBS, but it was the only diagnosis I was given, so I went with it.

Later in my teens I was far too thin. I occasionally skipped dinner. I was diagnosed with anorexia despite the fact that I ate breakfast, lunch, and snacks every day, I only skipped dinner 2-3 times per week at most, I had digestive problems, and I was so alarmed by my own weight loss that was the one who went to my parents with a concern that something was wrong and asked to see a doctor. The doctor put me on a high calorie diet. I eventually gained a little weight. End of discussion.

Around this time I was diagnosed with depression. I was sent to therapy that did nothing. I was put on anti-depressants with horrible side effects. After less than a year I was taken off of the medications. The depression was magically gone. End of discussion.

And lest anyone think that my medical history fell through the cracks, all of this occurred at one medical facility, where all of the doctors could see all of my records. How did they all miss this?!?

Was this necessarily Celiac disease? No, of course not. But when a child has constipation, diarrhea, weight loss (I was down to 89 pounds! I’m short, but I should never have lost that much weight – I should have been at least 100-105 at that point), joint pain, depression, nausea, stomach pain, and more, how did they not at least consider this possibility?!? This was the 1990s and while Celiac wasn’t as well known then as it is today, there was plenty of awareness. The doctors should have known.

An interesting thing has happened in recent weeks. After some time on hydrocortisone, my brain fog has been lifting and I am thinking more clearly. I have less fatigue. With that layer of haze lifted, I can better feel and understand what is happening with my body. I can think it through more clearly. And I wonder if maybe all of my problems actually stem from Celiac disease.

As regular readers of this blog know, I have a long list of diagnoses. But the thing is, a lot of them are comorbidities with Celiac. Many others are known to be secondary or tertiary issues. For example, I have polycystic ovary syndrome, but after many years of struggling with PCOS symptoms, they finally went away once I was on a proper dose of the right thyroid medication and fully gluten free. I now get my period at least every other month and I rarely have super heavy bleeding. I was recently diagnosed with SIBO, but it’s known that small intestinal bacterial overgrowth is more common in folks with Celiac. My digestive issues, aside from some SIBO symptoms, have all completely resolved now that I am 100% gluten free. I still have constant joint pain, but it has improved greatly thanks to treatments and, I suspect, being gluten free. My adrenal fatigue, one of my most disabling conditions, was caused by long term chronic illness. My Hashimoto’s thyroiditis is a comorbidity with Celiac.

All of this makes me wonder, what if I had been diagnosed with Celiac at age 12 (or younger)? If I had gone gluten free back then, could this have been avoided? Maybe the joint pain would have resolved. Maybe Hashimoto’s would never have developed? Mostly likely, if the Celiac and Hashimoto’s (if I even had it) had been treated properly to begin with, adrenal fatigue would have never begun. That means I would have never become too disabled to work.

That’s hard to think about. This was avoidable. Somewhat. I would still have had problems, of course. I would still have had to avoid gluten, which would have probably been a lot harder as a child in the 1990s than as an adult in the 2010s. I would have still gotten glutened and had to deal with the fallout. I would still have had autoimmune disease and would likely have had some fallout from that; some folks with Celiac feel fine, but others don’t. My health would not have necessarily been perfect. But it would have been a lot better.

This is only speculation of course. I can’t be sure that all of my health issues stem from Celiac. Over the years I have had several other theories about how my health issues all connect. Each one has felt closer to the truth, and this one does as well. I don’t know if I’m right, but I suspect that I’m at least close.

We need better screening here in the U.S. and around the world. Estimates of folks with undiagnosed Celiac are high, as much as 90%. I don’t want to see others live with what I have had to live with if it can be avoided. And I’m one of the lucky ones; some folks die from undiagnosed or late diagnosis of Celiac. If you or someone you know has several of the 300+ Celiac symptoms, please consider testing. You can see a shorter list here, but it is missing a lot of categories. And if you have experienced something similar to what I have described, please comment below. It is important to gather these stories in order  to highlight the need for more testing and awareness.

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