Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Neurologist?


KB.tpw

Recommended Posts

KB.tpw Rookie

I was diagnosed in March. I've been gluten-free since, but was glutened pretty bad 9 days ago. I threw up that night, was angry at everything the next day, then felt sad and anxious a few days. For all of the last 9 days, I have been incredibly clumsy- dropping things, running into things.. I've had the tingling and numbness that I used to have come back in my pinky and ring fingers and my tongue. Today I started having episodes of my skin (mainly arms and back) feeling like I covered myself in menthol cream.. A weird cool burning sensation.

Are all of these symptoms just normal for a while after being glutened? Or should I ask my GI about a neurology visit. I guess I thought the effects of being glutened would only last a couple of days. Not 9 :(


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



Celiac.com Sponsor (A8-M):



GF Lover Rising Star

Glutening reactions can vary from 1 day to a month or more.  This is a great deterrent for being very careful eating.  Some of us with multiple AI Diseases suffer effects from some/all of them when glutened.  

 

Hang in there.

 

Colleen

LSS Newbie

Glutening reactions can vary from 1 day to a month or more.  This is a great deterrent for being very careful eating.  Some of us with multiple AI Diseases suffer effects from some/all of them when glutened.  

 

Hang in there.

 

Colleen

I accidently drank a drink with gluten last night and that fast my aches and pains came back.. it does not take much to set off symptoms. Feel better!

KB.tpw Rookie

My symptoms seem to be worsening.. The numbness in my hands is becoming more frequent, my legs are covered in bruises from running into things, and I keep dropping things. My GI isnt exactly experienced with celiac outside of textbooks and I'm becoming worried. I'm getting my ttg tested next week. If levels are down, I'm going to go ahead and ask for the neurologist referral.

ravenwoodglass Mentor

If you had these symptoms pre-diagnosis and they resolved and then came back after you got glutened then these issues are likely to be celiac related. For some of us gluten impacts the nervous system. Do have your regular GP check your B12 levels as the tingling and numbness can be related to low B12.  It can take some of us weeks to recover from a glutening especially early in healing. If you do decide to get a referral to a neuro do make sure the doctor is aware of the neurological effects of celiac. There are many and some neuros haven't got a clue that celiac can impact the brain and nervous system. 

SMRI Collaborator

My symptoms seem to be worsening.. The numbness in my hands is becoming more frequent, my legs are covered in bruises from running into things, and I keep dropping things. My GI isnt exactly experienced with celiac outside of textbooks and I'm becoming worried. I'm getting my ttg tested next week. If levels are down, I'm going to go ahead and ask for the neurologist referral.

 

I would say that if your symptoms are getting worse and not better after 2 weeks that something else might be going on.  It could still be from gluten but I would call today and let your primary or GI know you are having all of these symptoms.  It might be worth finding a GI that is a Celiac specialist as well.

GottaSki Mentor

Celiac is an autoimmune disease. Accidentally ingesting gluten once gluten-free can trigger a cascade of symptoms until your body gets the message that there isn't more gluten to mount a defense to. It can take time. Eat whole foods and drink a lot of water. Some have luck with nettle or ginger tea.

That being said...checking in with your doctor is prudent. It never hurts to investigate symptoms and can be helpful in the future if you have a detailed account of what's happening in your body.

Hang in there :)


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



Celiac.com Sponsor (A8-M):



KB.tpw Rookie

I'm sure it's probably gluten.  I know the symptoms have a wide range and yes, I did experience most of these symptoms before.  The muscle weakness and lack of coordination are new, but probably would have come had I not gone gluten-free.  I don't think it's vitamins, though. I finally found an exact description of the tingling and numbness in my hands with cubital tunnel.  It's the ulnar nerve being compressed or super sensitive.. But I realized yesterday that just touching the back of my upper arm sends the pins and needles feeling down to my pinky and ring finger. Also, the tip of my tongue only goes numb when I'm in certain positions. I'm thinking that this all must be due to joint inflammation from gluten. I just have no idea if it was the one time a few weeks ago or if I'm accidentally ingesting gluten on a regular basis.. which would have to be solely due to cross contamination.  That's very possible with a family of six and frequently visiting grandparents. Ugh.. It's not even been 6 month and this disease is already making me feel insane.

GottaSki Mentor

I'm sure it's probably gluten.  I know the symptoms have a wide range and yes, I did experience most of these symptoms before.  The muscle weakness and lack of coordination are new, but probably would have come had I not gone gluten-free.  I don't think it's vitamins, though. I finally found an exact description of the tingling and numbness in my hands with cubital tunnel.  It's the ulnar nerve being compressed or super sensitive.. But I realized yesterday that just touching the back of my upper arm sends the pins and needles feeling down to my pinky and ring finger. Also, the tip of my tongue only goes numb when I'm in certain positions. I'm thinking that this all must be due to joint inflammation from gluten. I just have no idea if it was the one time a few weeks ago or if I'm accidentally ingesting gluten on a regular basis.. which would have to be solely due to cross contamination.  That's very possible with a family of six and frequently visiting grandparents. Ugh.. It's not even been 6 month and this disease is already making me feel insane.

Unfortunately, many of us become much more sensitive to minute amounts of gluten as our time gluten-free increases. The response becomes much worse.

Take a look and see where cc could be happening in your life. My home is completely gluten-free now because my reactions to cross contamination became quite severe so we evolved from shared kitchen to limited gluten like sep bread and cereals for my husband until he was the one that decided he would simply live gluten-free in the house and go out to eat when he wanted something with gluten.

That said it is possible to live in a shared kitchen as long as the family ALL abide by some rules to keep you safe. I kind of think this is the reason my hubs decided it was easier to live gluten-free at home....we eat many of the same meals we did prior to gluten removal...we just adapted the recipes.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - captaincrab55 replied to Dawn Meyers's topic in Related Issues & Disorders
      9

      Vaccines

    2. - trents replied to Dawn Meyers's topic in Related Issues & Disorders
      9

      Vaccines

    3. - ShariW replied to glucel's topic in Coping with Celiac Disease
      5

      potato chip cross contamination

    4. - Dawn Meyers replied to Dawn Meyers's topic in Related Issues & Disorders
      9

      Vaccines

    5. - trents replied to Dawn Meyers's topic in Related Issues & Disorders
      9

      Vaccines


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,844
    • Most Online (within 30 mins)
      7,748

    Diane Decensi
    Newest Member
    Diane Decensi
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • captaincrab55
      Hi Dawn,   Back in the Fall of 2019 with Covid looming I considered getting a pneumonia vaccine.  I went as far as getting in line and reading the pamphlet and saw the warning about not getting it if you ever had a reaction to diphtheria.  I instantly recalled a tetanus booster shot in 1971 that caused a severe reaction.  Tetanus booster shots include diphtheria.  I haven't had a tetanus shot since, but recent lab results show that I have many timed the immunity required.  Good Luck.  
    • trents
      Since we don't know what you reacting to when you get vaccinated, we can't say whether or not the pneumonia vaccine will cause a reaction. Is there some common ingredient in these vaccines that is causing a reaction. I mean, with many vaccines the antigen is delivered via a solution containing albumin (chicken egg protein). Some people are allergic to chicken egg protein so they can't take those vaccines. That kind of thing. When you say your "numbers are off the chart", what numbers do you refer to? Are you referring to celiac disease antibodies?
    • ShariW
      Cape Cod potato chips are gluten-free, according to the company. I've never had a problem with these.
    • Dawn Meyers
      I'm 63  Thank you for the article. I have worked with Dietitian at Mayo and also had breath testing done. They felt I was following a strict gluten-free diet along with eliminating sugar alcohol and chicory root. Also don't eat a lot meat, eggs and peppers. Because I get so sick I use only gluten-free products for my skin food medicine my pet food is gluten-free and I live alone so all my cooking stuff is all brand new prior to being diagnosed.  I buy only organic certified gluten free products and if not sure  look up or just don't eat or use. The Dermatologist at Mayo gave me a list of gluten-free products that I can use. ( personal products,  laundry detergent, I use vinegar and baking soda for cleaning ) . I ask family and friends to not bring  anything  in to my home that has gluten in it. I have tried  everything and my numbers still off the charts.   So as for the pneumonia vaccine I question if it has anything in it that will react negative in me? 
    • trents
      Dawn, yes, once the genes that give the potential for the development of celiac disease are "turned on" so to speak, they will be on for the rest of your life. It is not something that is cured or comes and goes but something that must be managed. Eliminating major sources of gluten from one's diet is pretty straight forward but many don't realize the multitude of places and ways gluten is hidden in the food supply and sneaks its way into our eats. So, eating "lower gluten' is easy but attaining a consistently and truly gluten free state is much harder and requires diligence. I am linking this article that might be of help to you in that regard:  
×
×
  • Create New...