I thought I was getting better. I felt a vitality I hadn’t since giving birth to my son; the antimicrobials seemed to be working, I was drinking dry wine and eating almond flour pancakes without issue. My throat was feeling better, I was working out most days, riding in my indoor bike, eating dark chocolate occasionally. My only symptom was burning in my back every time I ate and the occasional something-caught-in-my-throat feeling.
I went off the antimicrobials about a month ago, and soon started having strange symptoms again. I ate some paleo waffles and things went cray. My nose would close shortly after eating and my neck would swell up. It was unpredictable and made me fear eating. I was convinced I had histamine intolerance issues (still have this concern occasionally) and ordered some supplements from Amy Myers MD to try to remedy the situation. By the time they arrived, this symptom had passed.
I had a big GI flare– burping constantly, feeling strangled, constipation, you name it. Brain fog central. Then–I had a stressful conversation with a few different people and the dreaded numbness began. It started in my forehead, then my forearms, then slowly settled into my right leg, right arm, right shoulder. It goes between feeling dead to feeling fatigued to feeling like I had a tetanus shot and it’s droopingly sore to an empty feeling. My left eye twitches almost constantly.
I re-took my SIBO breath test and my methane numbers are sky high– in the hundreds. I saw my PCP and she referred me to a neurologist. Blood work and more blood work. ANA is negative. Everything normal except high iron but low ferritin and low white blood cells. Neurologist will call about the blood work in a week or so and we will decide if I should get another MRI as well as an electrode conduction something or other.
Oh, and somewhere in there I also saw a new GI doctor in green pajamas via telehealth who grumpily asked why no one had ever tested me for celiac disease and why I couldn’t stay on antimicrobials forever.
I DON’T KNOW but I’ve been off gluten since basically October and don’t want to start eating it now. So…. we wait. I’m waiting to hear from my functional nutritionist for my new protocol to treat the SIBO, since that may be triggering all of this locura.
So here’s my plan. Try to heal my gut, regardless of if I have celiac, MS, or any other autoimmune disease (at this point I’m convinced there’s something definitely going on with my immune system). Attempt to focus on other things during this waiting phase. Continue eating Fast tract/paleo style, meditate twice a day, acupuncture once a week, get plenty of sleep, plenty of water, and no alcohol, sugar, grains, gluten, soy, corn, legumes, or dairy. Follow the protocol my nutritionist gives me to eradicate SIBO. Try not to freak the eff out.