Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Peripheral Neropathy


Lisa

Recommended Posts

Lisa Mentor

*toe numbness

*ankle and shin numbness

* thigh tingles

*occasional sharp knee pain and losing support

*Shoulder joint pain.

*All on the same side.

That's right side..............

Left side,

Can't balance on the left side

Hand shaky, right hand is cool,. Any advise would be appreciated.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



trents Grand Master

May I ask, how old are you? The symptoms you describe could be reflective of a number of medical conditions or a combination of them, some of them serious. You should be seeking professional medical help if you are not already. Don't assume your symptoms are related to celiac disease and blow it off.

Steve

Lisa Mentor

I am 52 and what do you know that I don't know. I have an appointment on the 28th of this month and gathering all the pertinent information that I can.

trents Grand Master

I don't know anything you don't know. I have worked as a hospital staff chaplain for 15 years and have seen a lot of people who have symptoms similar to what you describe. Some of the things you describe could be cause by everything from a brain tumer to inner ear problems to diabetes to arthritis to fibromyalgia (sp?) to lupis. Those are just some things that come to mind. At 52, you could be experiencing the onset of degenerative diseases of various sorts and my guess would be you have more than one thing going on. I hope you aren't insulted, I'm 56 so I'm furtur along the down slope than you are.

Steve

Canadian Karen Community Regular

Lisa,

Have you been neglecting yourself to care for Hazel? You are too much like me, I know the answer already..... ;)

Alot of it sounds like what I get like when I am over-stressed, and push myself too hard. I don't eat, I don't slow down, I just keep on going until everything that needs to be done gets done, and there never are enough hours in the day, and I find that at 9 p.m., I realize that I haven't even eaten a morsel the whole day..... Then when it's bedtime, I can feel tingling down my arms from my neck seizing up and pain in my hips going through down to my feet..... Then I lay in bed for hours because I can't turn my brain off (or my bowels! LMAO!).....

I would not take any chances though and see if you can get your appt. moved up at all..... Don't just shrug it off.......

Hugs.

Me

Karen B. Explorer
*toe numbness

*ankle and shim numbness

* thigh tingles

*occasional sharp knee pain and losing support

*Shoulder joint pain.

*All on the same side.

That's right side..............

Left side,

Can't balance on the left side

Hand shaky, right hand is cool,. Any advise would be appreciated.

I'd call my doc tomorrow morning, I'm not sure I wouldn't be checking with an ER tonight. I know I wouldn't wait for the appointment on the 28th.

I'm 48 and a co-worker that's about my age started experiencing "mini-strokes" due to stress. There are other things that can also remind us that while 50 may be the new 30, sometimes it's still 50.

If it's nothing but pushing yourself too far, then you're only out the time it took to check on it But if it's something, I don't know of many medical issues that are improved by turning a blind eye. Also, how can you take care of anyone else when you're fighting something like this? As they say on planes, first take care of yourself and then assist the person next to you.

Let us know how you're doing tomorrow.

psawyer Proficient

Lisa, please check your personal messages.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



grey Explorer

My peripheral neuropathy was on both sides, except for the random pains (like being stuck with a hot needle), same thing with the weakness. I think this is fairly typical.

The way that you have things on one side should probably be checked right away - like tonight, or ASAP - as others have been saying. Do you or have you been having headaches? If so, you really might want to go to the ER. You definately want to talk to the doctor before the 28th - do you have access to an oncall md?

It can't hurt to have things checked.

I hope that everything checks out ok and you feel better.

best,

grey

jerseyangel Proficient

Hi Lisa,

I've been having computer problems, but I wanted you to know that I'm thinking about you--but don't have a good answer to your symptoms.

My PN mostly improved on the gluten-free diet--mine was mostly on my left side, except below my knees, where the tingling and stabbing sensations were on both sides.

I still have some numbness on the left side of my face and altered sensations in my left arm.

You've been under more stress than usual, and you mentioned getting glutened by Hazel's pots and pans recently. It could be that, but I agree with everyone that it's best to bring all of this to the attention of your doctor.

Feel better, friend, and keep us posted :)

Lisa Mentor

Thank you for your replies. My symptoms appear to be mild. I will watch it closely and consult with my doctor.

Yes, stress can do a number on you and it's coming at me from all directions. :(

I appreciate your thoughts and a special thanks to those that PM'd me.

VioletBlue Contributor
Thank you for your replies. My symptoms appear to be mild. I will watch it closely and consult with my doctor.

Yes, stress can do a number on you and it's coming at me from all directions. :(

I appreciate your thoughts and a special thanks to those that PM'd me.

Some of the symptoms you describe sound like my sciatic problems. Sciatica has a tendency to radiate down one side of the body, down one leg, out one arm. Nerve pain is not necessarily the only component of sciatica. Numbness tingling and joint pain can happen as well and you are not necessarily aware that it originates from your spine.

I have also experienced neuropathy and it's been a somewhat different experience for me from the sciatica. At one point just before I was diagnosed with Celiac is was particularly bad. I would get sharp sudden stabbing pains, like a needle being stuck in my. My limbs were most often the targets of that. I also used to fall down periodically and not know why. I'd be walking along and suddenly I was on the ground with no sense of having tripped or even fallen. It is the oddest sensation. I still have trouble knowing where my arms and hands are sometimes, LOL. Again, hard to explain, but it's not uncommon for me to slam an arm into a wall going around corners or into furniture.

violet

happygirl Collaborator

MG-

Not sure how I missed this before---just saw it. I'm happy that you have an app't lined up. I don't have any brilliant answers, but I hope that your doctor has some ideas and guides you down the right path.

xoxo

mftnchn Explorer

Just one more tidbit of information. I tend to have my allergy symptoms on the left side, congestion is worse, etc. A naturopathic doctor once told me that this is quite typical.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,668
    • Most Online (within 30 mins)
      7,748

    CDR40
    Newest Member
    CDR40
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rejoicephd
      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.