Dude note: To help celebrate and promote Celiac Awareness Month, I will be writing 30 blog posts over 30 consecutive days (weekends excluded) with the theme “30 Days of Helping 30 Celiacs”. Each post will be aimed toward helping one specific person or group of people. If you or someone you know needs help, guidance, advice or a shoulder to cry on, please contact me and I will do what I can to help. On the 31st day, you’re on your own. Totally kidding.
Today’s 30 for 30 blog post is for: Sarah, who’s having severe neurological symptoms and is looking for advice/support/guidance.
Not sure if you saw the story last week, but a young man in Brazil who suffered from throbbing headaches and vision problems for 10 years turned out to have stone-like buildups of calcium in his brain. The stones were likely a rare complication of the man’s celiac disease. That’s right…they found patches of calcification in the back of the man’s brain due to his celiac. The image above is his CT Scan. You still think celiac just results in tummy aches? Here’s a link to the article.
Why am I bringing this up? Read the below email from Sarah, who is dealing with severe neurological symptoms and is frustrated beyond belief. Bear with the long email below but it’s worth the read. As always, anything you can offer would me SO appreciated.
I am a 35 year old woman who wasn’t diagnosed with anything gluten related until I was 32. I don’t have the official diagnosis, though I was the first in my family to discover that they needed to be gluten free, and others in my family have gotten the official diagnosis after I went gluten free in 2010.
I am writing to you mainly about the neurological and nutritional deficient symptoms of celiac disease. I know you have touched on them, but I am looking for advice on how to prevent and deal with them to the best of my ability. I want to apologize in advance for the length of this letter.
My diagnosis of unspecified gluten intolerance came about because no amount of supplementation was keeping my phosphorous, magnesium, or vitamin D levels in a healthy range.
Just recently (in the last several months), I discovered what life actually felt like with enough B vitamins for me, which I really don’t even remember experiencing as a child (bet nobody’s surprised to discover that I had major failure to thrive/underweight-ness for years as a child).
Right now, though, my absorption is terrible, and whether I am an energetic and remarkably stable bundle of activity and intelligence or a cognitively impaired, depressed, linguistically impaired, peripherally neuropathic bundle on the floor really depends on my nutritional absorption. I long for the days when accidental glutenings (I get enough physical pain from gluten that intentional cheating has never been an issue for me) only involved digestive symptoms and a loss of energy.
I literally lose my brain. At a mild level I start finding myself substituting my cat’s name accidentally for words I intended to say, or saying thank you when I meant something else entirely (hence the linguistically challenged part of it), but after that I start being unable to think, solve simple problems, or even remember simple things like turning off the stove on enough occasions as to become alarming. (I had a brief fear that I might have early onset Alzheimer’s and then discovered that deficiencies in some of the B vitamins can cause those sorts of things.)
I wonder, am I the only one out there experiencing this kind of thing? It is so utterly bizarre how I can be a depressed and immobile and utterly idiotic bundle of weepiness on the floor who feels like her brain can’t breathe (it is the best way I can explain it, physiologically impossible though it may be), go get a B12 shot, and in a few minutes to an hour be upbeat, energetic, productive and my old self again.
Are any doctors focusing on this stuff? Am I out here alone trying to figure out how to keep my nutritional levels up on my own?
I know how this must sound. Before I went gluten free, I’m pretty sure if I read the letter I am in the process of finishing I would have many thoughts about their relative mental health. I would probably think something along the lines of placebo affects and manic-depression and jargon term this and perhaps medication that might help.
I won’t even begin to describe my transformation physically since I got treatment for the B vitamin deficiency, or how I since discovered how much I love physical activity and exercise now that my body has the nutritional fuel to be able to carry out the activities or the hell that trying to engage in such activities was before I got treatment for it because this letter is so incredibly long already, but I do want you to know the effects of proper nutrition on me are not just mental, but also physical. But seriously, any resources, help, ideas, warnings about what vitamins or electrolytes I might need to supplement next before the bottom drops out again, anything.
I will probably lose my graduate career here. I do not want to lose quality of life as well!
Any help, advice, or anything you might have would be greatly appreciated. I know I can’t expect perfect health after unintentionally poisoning myself for 32 years, but a modicum thereof would be wonderful,
Sincerely, and thank you for having this blog!