Weird Limb Sensations

[Blue Roan]

I was diagnosed with celiac 4 months ago and at the time I was very symptomatic. I am significantly better now, but in the past month or so I noticed weird arm sensations. Sometimes, my arms/hands feel a bit weak, almost like they don't belong to me. I can still use them just fine, though. This happens a few times a week. 

Back in March, I was extremely sick when eating corn on the cob and had taken a corn break. A month ago, I noticed that I am now able to tolerate some products containing corn-based ingredients. Yesterday, I went to my first restaurant since diagnosis that has mostly gluten-free items on the menu. Thinking I could handle corn again, I got a delicious gluten free corn tortilla chicken enchilada and...BAM! Within minutes, I had CRAZY symptoms. I immediately stopped eating half-way through the meal.

I felt like I was about to pass out, dizzy/disoriented/pressure in my head, my stomach hurt, and that arm sensation happened at such a high intensity that my hands felt too weak to do basic things (like using my phone). It was terrifying. These symptoms occurred in waves for about an hour. I took a nap for a couple of hours, and the symptoms eased a little, but I was left with a terrible headache at the back of my head. I guess I'm still sensitive to higher concentrations of corn...or there was gluten cross-contamination. 

This morning, I feel mostly back to normal, though my limbs feel slightly weak. Has anyone else felt like this? 

In the past few months, I've been to two GI doctors, an endocrinologist and my primary to monitor my progress. Aside from celiac and osteomalacia due to celiac-related malabsorption (that I see the endocrinologist for and am expected to make a full recovery from), I am otherwise healthy. Nutrient levels, glucose, CBC, thyroid, and kidney function are all fine. However, those symptoms were terrifying, and I wanted to know if other celiacs had experienced them. 

 

The only other thing I can think of is that sometimes I wake up with a sore neck/headache from sleeping in weird positions. I also just got a new bed and mattress several weeks ago. Still working on making the mattress more supportive/getting better pillows. Could that contribute to the arm sensations? 

[PA Painter]

Yes, I just glutened myself yesterday. My two middle toes and two pinky fingers are always burning with neuropathy. It is a horrible pain. I feel red hot spikes right now. NSAIDs don't hold a flame to nerve damage pain. It just started for me. I have upcoming procedures. 

[harleygal726]

Blue Roan,

There are over 300 signs/symptoms for Celiac Disease. Sounds like you may be having sensory issues.  I know for me that nutritional deficiencies like B12 can be a cause of that.

Have you had any testing for nutritional deficiencies? You want to have Micronutrient Testing, I had it done through Spectracell dot com. They test at the cellular level.

Please read this article by Scott Adams. Below it may help answer some of your questions. Also you can search for key words on this forum to find more information. Good luck. 

https://www.celiac.com/celiac-disease/scott-adams-story-of-his-diagnosis-of-celiac-disease-r319/page/8/?tab=comments#comment-22007

"A full recovery took me 2-3 years, and during that time I also had temporary food intolerance issues to things like dairy (casein), corn, tomatoes, and chicken eggs. During the 1-2 year time period after going 100% gluten-free I was thankfully able to add those things back to my diet." Scott Adams

[PA Painter]

I'm on some what of an elimination diet right now. Yesterday I introduced a new instant coffee to my morning smoothie that lit me up. I am still hurting now but it's ebbing off. The brain fog, stiff shoulders, etc. All from 2 scoops of instant coffee in my smoothie. I switched back to Cafe Bostello this morning and no issues. This thing is hard to nail down. I have been confused quite a bit along the way. This site helps.

[PA Painter]

I get ill feelings from pretty much all of the processed "gluten free" food. The frozen diners are a big no go. The cookies are good but they get me sick too.

[Blue Roan]

On 6/15/2024 at 10:35 AM, harleygal726 said:

Blue Roan,

There are over 300 signs/symptoms for Celiac Disease. Sounds like you may be having sensory issues.  I know for me that nutritional deficiencies like B12 can be a cause of that.

Have you had any testing for nutritional deficiencies? You want to have Micronutrient Testing, I had it done through Spectracell dot com. They test at the cellular level.

Please read this article by Scott Adams. Below it may help answer some of your questions. Also you can search for key words on this forum to find more information. Good luck. 

https://www.celiac.com/celiac-disease/scott-adams-story-of-his-diagnosis-of-celiac-disease-r319/page/8/?tab=comments#comment-22007

"A full recovery took me 2-3 years, and during that time I also had temporary food intolerance issues to things like dairy (casein), corn, tomatoes, and chicken eggs. During the 1-2 year time period after going 100% gluten-free I was thankfully able to add those things back to my diet." Scott Adams

Hi Harley, 

Yes, I had a nutrient panel done recently and B12 along with all the others (iron, calcium, magnesium, k, B6, etc.) were in the normal range. I take a daily multivitamin and drink homemade chicken bone broth almost daily for extra nutrients. I also had a regular set of labwork done and thyroid, kidney, liver function, and glucose were normal. 

Thank you for the article. I had gone through it previously and it's very helpful. 

It's just crazy that I am only now having the vertigo/dizziness/weird arm sensations 3 months after going completely gluten free post-diagnosis. Even now, I am having this clogged head/lightheaded sensation and have been avoiding corn since Friday when I had eaten out. My ears almost feel stuffed, like I'm in an airplane. Could this be a temporary side effect of going gluten-free? I'm hoping this isn't permanent. 

[PA Painter]

I was continuing to get a  reaction from processed food. I had to change to nothing but one ingredient foods like chicken and vegetables. I am still working it out. I glutened myself with instant coffee believe it or not. After going to the elimination diet all weird sensations have eased off, until I glutened myself. The idea is to slow introduce foods to monitor whether it creates a reaction

[Joyes]

I think the new bed has something to do with some ofvyour symptoms. Compressing a nerve maybe

[cristiana]

@Blue Roan  Hi Blue, sorry as this is going to have to be a bit of a rushed not properly edited post as I'm going on a trip for a few days but will try to check back on replies, if there are any, when I can.

I have felt like you do (and still sometimes do) with arms and legs not being mine.   It wa particularly bad following a neck injury (picking up my small son and flying him like a plane above my head!) shortly after my diagnosis.  Also, for some months, my arms and legs didn't feel right, and it felt like I was walking on board a ship, when your foot lands on the deck but the deck isn't where you think it should be.  Or hard ground seemed 'spongey', and not hard.  You do complain of neck pain and stiff shoulders and in my opinion that is important, you could have the same issue.  (I ought to add that my 'son flying' injury was so fleeting and seemingly inconsequential when it happened, it took me months to put two and two together that it might have been the thing that triggered the sensations!).

I pursued a slew of tests and it turned out, once I'd had an MRI, that I had badly aligned discs in my neck which were the cause - I was diagnosed with cervical dizziness (have a google).  Have you any history of whiplash?  I am not a medical person, but feel that sometimes putting your neck out even if very slightly could cause problems with old injuries.

Also, I used to wake up with completely numb arms from the elbow down, or pins and needles in my fingers, before diagnosis.  That was separately diagnosed as ulnar compression.

When we are first diagnosed with coeliac disease long term deficiencies can cause all sorts of weird issues, too. You may have normal levels of B12 and iron but having read quite a bit about it, sometimes these levels, if they are on the lower side of normal, would be considered too low in other countries, or perhaps not high enough for your body to really benefit.  Case in point, I once read on this forum that B12 levels in Japan are considered normal when at 500, whereas my lab, which used the same measurements, said that anything at half that value was normal, here in the UK.  Another example with iron levels, a maxillofacial  consultant told me he wanted to give me an iron infusion when my levels were at 15 (normal in the UK) but in his view they should be 40 or above to prevent ulcer issues I was getting at the time.

It is just possible that as your levels improve, so too will the issues you speak of.   Keep us posted.

Cristiana

Edited June 21, 2024 by cristiana

[Blue Roan]

@PA Painter - Thank you! I am doing an elimination diet/food journal now and will see how it goes. I'm trying to go paleo and dairy-free for a little while as well to see if that makes a difference. 

@cristiana - I appreciate your thorough reply! Sorry to hear you've gone through this issue as well. No, I do not recall having whiplash or a neck injury in the past, but I do wake up with a bad headache/sore neck sometimes, so perhaps the bed is causing misalignment. I am trying to get into physical therapy for osteomalacia, and hopefully, they can help regarding my neck as well. I also hope to find a better mattress with more supportive pillows soon. 

[cristiana]

I would try the rolled towel pillow, to put under your neck.  It has helped me enormously, including addressing facial pain.

I use a hand towel and put it under my neck at night when I am having issues.   This is how to make one.  Worth reading up about how to use it.

 

Edited June 25, 2024 by cristiana

[Blue Roan]

Hi @cristiana, thank you for this video! 

I've been going largely paleo these last few weeks and have cut out most grains. I also have been sleeping on a more supportive mattress. Thankfully, the weird neuro/arm sensations have stopped. It's crazy how the smallest things can impact the body in major ways! 

[cristiana]

Hello @Blue Roan

Thank you so much for this encouraging update!  I'm so pleased you are feeling better.

I agree, the smallest things can impact the body in major ways.  

I wish you continued improvement.

Tania