It start about two years ago, around the spring of 2014. It was so subtle, I didn’t even really notice. I thought the things I was experiencing were related to getting older. After all I had just turned 40. Having never been 40 before I assumed the changes were natural.
The first symptom I can recall is what I would now call “brain fog”. Occasionally, maybe every week or two at first. My brain felt like someone turned the power switch off. As if 90% of my ability to comprehend was just gone. I thought I had narrowed this down to eating certain things and tried to avoid those. Over the next year and half the brain fog continued and over time, more things started happening. I had odd skin things happens – tingling and numbness, I started to get joint pain, I had near constant ear problems and infections, heart palpitations and on.
These were all incremental enough that I thought they may be normal. That is until about a year and a half had passed. Somewhere around that time period the brain fog became a near constant. I couldn’t think, I was forgetful (walking away from my running vehicle and several occasions) and I knew something was wrong. I knew that my symptoms were not normal.
Not being the go-to-the doctor sort. I started looking for solutions. I tried several things including diet changes, weight loss and too many vitamins. At one point I became convinced that I was suffering from a Candida imbalance. Many of my symptoms seemed to match Herxheimer reaction “die-off”. That sent me down a path of digestive enzymes, molybdenum supplements and probiotics. I had a few days where I convinced myself I was feeling better, but those were short-lived and probably mostly wishful thinking.
Finally… I ran across a forum post that described some of the same symptoms I was having. The person initially thought the were suffering from Candida imbalance but had figured out that they had Celiac Disease. I thought it was worth a try and started a “gluten free” diet. Gluten free is in quotes because I didn’t really realize the extent to which gluten permeates our food supply. Nonetheless within a few days I felt much, much better.
Having what I believe to be my diagnosis in hand, I was ready to go to my Doctor. I know that doesn’t make much sense, but it’s what happened. I explained my symptoms and thinking and was pretty quickly dismissed. Having Celiac Disease without classic GI symptoms was not something that my Dr had run into. He just didn’t believe I had it. I spouted off that only a minority of people with Celiac have diarrhea and was shrugged off. He actually had me convinced I was crazy. In any case he ran a battery of tests including the Transglutaminase IgA antibody test. At my follow up I was told… everything looks good. Oh, except your Transglutaminase IgA antibody test result was very high. He said I *may* want to consider a gluten free diet. His recommendation was to try that and if it didn’t seem to work he would refer me to a specialist. In retrospect, that was bad advice. It didn’t take Celiac Disease seriously and it was contrary to what most sources, that I’ve read, say the next step is. I should have been referred to a gastroenterologist. I made my own appointment. Shortly after I had an endoscopy and was officially diagnosed with Celiac Disease.
My initial emotion was… happiness. I was glad that I didn’t have a more serious condition. I was glad to know what I had and how to treat it. That emotion faded and in short order was replaced with depression. In a certain sense, I felt like a stranger to myself. After all, I had been able to do A, B and C why could I no longer do those things? It’s odd to say, but I felt like I didn’t know me. I also felt like I was a foreigner in my own home town. I’ve done some traveling to third world countries and as I drove around I felt like I was driving around in a foreign country. After all many of the places I looked at were just as unsafe for me as a restaurant in the hill country of Guatemala. These people that were doing the things they had always done were now different from me. That didn’t last all to long, but it wasn’t a fun period.
I’m happy to say that I’m feeling healthier. I also have endoscopy results that show my small intestine as healthy. Although I wouldn’t choose this disease, I do accept that I have it and am committed to living a healthy gluten free lifestyle.
I don’t have what I would term classic symptoms.
Here are my basic symptoms…
- “Brain Fog” – forgetfulness, problems concentrating, my brain feels like it is switched off. Dizziness.
- Tingling sensations, numbness (peripheral neuropathy) – at times feels like adrenaline and then numbness like Novocain wearing off – warm face
- Fatigue – sometimes extreme
- Joint pain
- Muscle twitches
- dark circles and bags under my eyes
- Sinus pressure
- Post nasal drip
- Heart palpitations
- Ear sensitivity and ear infections
- Ringing in the Ears – Tinnitus
- Forgetfulness, fatigue, problems concentrating
Since going strictly gluten free, I have become more sensitive to even small amounts (cross contamination level) of gluten. My immediate reaction to cross contamination are more similar to what I would call classic symptoms. Those include gas and stomach cramps. I didn’t really have these symptoms, at least that I noticed, before going gluten free.
A large percentage of Celiac Disease is undiagnosed. If you think you may have Celiac Disease based on these symptoms or others you have read, I would encourage you to get a blood test. It’s an easy thing to do.
- Mayo Clinic Going Gluten Free: Essential Guide to Managing Celiac Disease and Related Conditions – my first read on Celiac Disease. Written by Joseph A Murray – great overview of conditions of celiac disease and other gluten related conditions.
- Gluten Is My Bitch: Rants, Recipes, and Ridiculousness for the Gluten-Free – a (sometimes) funny, informative and practical look at celiac disease
- Jennifer’s Way: My Journey with Celiac Disease–What Doctors Don’t Tell You and How You Can Learn to Live Again – If you, a loved one or a medical professional in your life, doubt the seriousness and impact of celiac disease… read this book. Jennifer’s story is sometimes heartbreaking and speaks to the need for celiac awareness among medical professionals.
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