Neurological symptoms after diagnosis of celiac disease

[acd0198]

Hi everyone,

I am posting because I am curious if anyone has had similar neurological symptoms that could be related to celiac disease.

To give some background info, I am a 23 year old female, healthy, active and recently diagnosed with celiac disease in August (5 months ago). I got tested only because my uncle and dad recently were diagnosed and because it’s hereditary, I asked my doctor for the test. My only symptoms were low ferritin, stomach aches at night 4-5 times a week and bloating. In the summer months before my diagnoses, I also felt dizzy/lightheaded and would often get a slight, strange tingling feeling in my hands/arms/lips. During the summer I also had an aura migraine (I get migraines but never had this before) where my right arm and right side of the inside of my mouth/tongue went completely numb (like dental freezing numb) for 10 minutes followed by a bad migraine headache. This probably is unrelated but I thought I would mention it.

I have been eating gluten-free for the last 4 months now and am very careful with hidden ingredients, cross contamination, etc. My stomach aches and bloating are completely gone and my ferritin levels are already up a lot (yay!). 
Around the same time I started eating gluten free, I started to have a strange sensation around my right eye socket and up to the right side of my forehead. When I blink, it feels like it’s numb but when I touch the area I can feel it perfectly fine and it’s not numb. This feeling usually comes around 2pm and stays until I go to bed. It doesn’t hurt but it is an irritating feeling and more concerning than anything that it could be an underlying symptom of something. In the last month I have also now had slight double vision. It’s most noticeable when I’m looking at words and numbers that I notice a hue above/below the words and especially when looking at my phone, computer, tv, digital clock. But sometimes I also see a slight hue  around my fingers for example. I had an eye exam this month and everything was fine so I know it’s not an eye problem. 
 

I’m curious if anyone with celiac disease has had similar symptoms to what I’m experiencing. I find it strange that I got the numb face feeling symptoms for the first time when I started eating gluten free, but I know the gut healing process can take a long time and think maybe it’s a coincidence of timing. My doctor thinks its sinus or migraine related but I’m not convinced. 
 

Thanks in advance!

[trents]

I don't mean to frighten you but I would advise getting a head CT done. Also, make an appointment with an opthalmologist. Your eye doctor is an optometrist and qualified to examine your eyes for corrective vision but not a specialist in eye diseases. 

[Scott Adams]

My symptoms included severe knots in my shoulder and neck muscles that often caused bad stiff necks, and this would sometimes cause a pinched nerve in my neck which included tingling sensations that shot from my right shoulder to the top of my head. I did get an MRI done on this, but they only found a compressed disk in my neck. After years of being gluten-free these symptoms have gone away.

I agree with @trents though, take these symptoms seriously and don't assume that they are related to celiac disease. Get your doctor to run tests to eliminate other possible causes.

[acd0198]

Thank you for your concerns @trents @Scott Adams, I do have an MRI booked for the end of the month. 

[Scott Adams]

Let us know how things turn out!

[BuddhaBar]

On 1/14/2021 at 8:42 PM, Scott Adams said:

My symptoms included severe knots in my shoulder and neck muscles that often caused bad stiff necks, and this would sometimes cause a pinched nerve in my neck which included tingling sensations that shot from my right shoulder to the top of my head. I did get an MRI done on this, but they only found a compressed disk in my neck. After years of being gluten-free these symptoms have gone away.

I agree with @trents though, take these symptoms seriously and don't assume that they are related to celiac disease. Get your doctor to run tests to eliminate other possible causes.

WTF Scott Adams!? I get the same knot! Between my shoulder blades. An extremely painful dot slightly to the right. It usually radiates to my right arm with some numbness. A few years ago it got so bad that I couldn't get out of bed because the slightest arm and shoulder movement would trigger the worst pain I've ever had. I had to roll out of bed screaming. I had no idea this was connected. I thought it was something else. I also get facial pain. Not jaw pain, but in my cheeks. 

[Scott Adams]

For me it took a combination of the gluten-free diet and using a traditional Chinese bamboo pillow. It turns out that most cultures did not have soft pillows, especially when you look 100 years back and earlier. For hundreds of years the Chinese have used bamboo pillows which are much harder. Here is a picture of mine. It took me about 2 to 3 months to get used to sleeping on it. It’s sort of stretches your neck kind of like traction.

[CMCM]

Interesting pillow, I've never heard of this before.  Must you sleep on your back with it?   Finding a good pillow has been an impossible task for me.  Right now I'm using one of those "My Pillows".  Not bad, better than most I've tried, but not perfect.

[BuddhaBar]

I've seen those pillows before. Yup, most of us are sleeping too soft. Soft beds and pillows haven't been around for that long. My grandmother still slept in her 1950's bed during the 1980's. It was pretty firm and I slept like a queen in it when I was a kid. 

I was told this painful knot was stress related. Because I'm the "fight-type" (I didn't know I was, but I probably am) my shoulders and upper back gets tense because I'm prepared to fight. The "flight-type" gets a tense lower back because they're preparing to run. It made perfect sense. Never knew it could be connected to gluten. I had a knot-episode just a couple of weeks ago after my Christmas glutening, but it wasn't that severe and didn't last that long. I believe it's an inflammation in the muscle attachment causing the muscle to swell and pressing on the nerve. Always on the same spot. 
It can be stress related too because a co-worker hit the wall 3 months before I did and she had knots too and she doesn't have celiac disease. 

One thing I know for sure is that tons of weird things started to happen to my body in April 2015. That's probably when my immune system decided to hate me for eating gluten. 

[Scott Adams]

19 hours ago, Scott Adams said:

For me it took a combination of the gluten-free diet and using a traditional Chinese bamboo pillow. It turns out that most cultures did not have soft pillows, especially when you look 100 years back and earlier. For hundreds of years the Chinese have used bamboo pillows which are much harder. Here is a picture of mine. It took me about 2 to 3 months to get used to sleeping on it. It’s sort of stretches your neck kind of like traction.

I am a side sleeper but you can sleep on your sides or back. It has a bamboo frame inside and is slightly flexible. It gets more flexible with age, and can last about 5-10 years. I got mine at a day market in Taiwan where the are referred to as traditional pillows, almost everybody used to use them, but many now use Western pillows.