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Neurologist?

KB.tpw

By KB.tpw
in Related Issues & Disorders

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KB.tpw Rookie
KB.tpw
Posted

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 :(

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GF Lover Rising Star
GF Lover
Posted

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
LSS
Posted

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
KB.tpw
Posted
  • Author

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
ravenwoodglass
Posted

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
SMRI
Posted

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
GottaSki
Posted

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 :)

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KB.tpw Rookie
KB.tpw
Posted
  • Author

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
GottaSki
Posted

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.

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