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Neurologist?


KB.tpw

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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 :(


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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 :)


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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.

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
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      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
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    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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