I was diagnosed with celiac disease in 2013 after many many years of unexplained health issues. I was likely suffering from the disease for a long time before that. Celiac disease and gluten effects are different for everyone but I want to share my story for those of you who are curious.
No, I never “cheat”
I get asked all the time what happens when I eat gluten. I never eat gluten intentionally and am very cautious when I go out to eat. However, even tiny particles of gluten due to a cutting board or pan not being well cleaned after coming into contact with gluten (called cross-contamination) will cause problems.
Most people without celiac disease assume that I probably get diarrhea and feel sick to my stomach for a few hours or even a couple days after an exposure. While that would be unpleasant, I wish this was what happened. A clear sign that passed in a few days sounds heavenly. Instead, things fall apart a bit more insidiously.
Gluten effects are systemic
For my body, and many others with celiac disease, gluten acts as a neurotoxin. Even though the initial autoimmune reaction is taking place in the small intestine, there is a whole pathway of inflammation that wreaks havoc.
Autoimmunity and the inflammation that results when our immune system attacks our own tissue is like a fire. The fire does not stay localized to one area, the sparks take off in the bloodstream and start more little fires pretty much anywhere they want. Typically, these additional fires (inflammation) take place in areas where there is already a weakness or susceptibility.
Back to the neurotoxin business. Gluten poisons my brain. This means anywhere from 24 hours to 1 week after getting exposed, I start to feel “off”. I forget words, my keys, I can’t focus well. I experience episodes of intense fatigue. My ability to manage time goes out the window. Waking up in the morning I can feel like I’m hungover– headachy, heavy eyes, hard to move. I lose coordination which I notice when I try to write or put on makeup. My balance and spatial awareness suffer and I often run into things or trip. My skin breaks out in cystic acne, and my menstrual cycle is late and heavy. I also get digestive symptoms like bloating and constipation, but that’s honestly the least bothersome. My neck aches, I clench my jaw, and I get tingling and numbness in fingers and toes.
Gluten is a neurotoxin
Despite all of this, which sucks, the worst part is the black cloud that descends. I feel like someone replaced my brain with a different one. I often experience anywhere from 3 days up to 3 weeks of intense emotional distress.
On top of not feeling well physically, it becomes extremely difficult to handle any stress emotionally. I feel negative and victimized. Nothing seems to go right. I cry at the drop of a hat, my temper is hair-trigger, and I feel overwhelmed. I struggle to make basic decisions. The things that usually bring me comfort are hard to enjoy. My brain chemistry just feels completely off and the self-loathing is quick to set in. I not only don’t want to be this person, I hate her.
This is the toughest part. Aside from maybe the acne, I look totally normal on the outside. I look healthy. Like many people with chronic illness, this is an invisible affliction. It’s hard to explain to people. Getting glutened doesn’t seem like a big deal and very few people even know that it can have a neurological effect. If you can relate to any of this and you aren’t getting good medical care, I encourage you to find an eastern medicine or functional medicine practitioner who can offer tools for coping. Having good emotional support via therapy, friends, family, and community is essential too.
Common Symptoms of Celiac and Non-Celiac Gluten Sensitivity
joint pain or arthritis
depression, anxiety, bipolar
unexplained iron-deficiency anemia
- liver and biliary tract disorders
tingling, numbness or pain in the hands and feet
seizures or migraines
missed menstrual periods
infertility or recurrent miscarriage
canker sores inside the mouth
dermatitis herpetiformis (itchy skin rash)
- hair loss
- folic acid and B-12 deficiency
- gallbladder inflammation
- bloating, gas, cramping, constipation or diarrhea (only 1/3 of adults get digestive symptoms)
- thyroid disorders
- foggy brain/hard to concentrate/ADHD
If you suspect you may have celiac disease or experience gluten effects, schedule an appointment and get tested (contact me for test recommendations) before removing gluten from your diet! Once gluten is removed, testing is no longer accurate and it can be very rough on the body to reintroduce gluten for testing purposes.
The contents of this site, including text, graphics, images, and other material are for informational purposes only. Nothing contained in this site is or should be considered or used as a substitute for professional medical or mental health advice, diagnosis, or treatment. Please schedule an appointment for personalized health advice.