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

Tingling Senstation - Parasthesia?


sansglutengrl

Recommended Posts

sansglutengrl Explorer

So.

I *may* have gotten glutened last week. Had dinner at a friend's house and I know all the food was ok because I brought it, but may have gotten glutened somehow from knives or plates or something. Felt like *total* crap the next day - stomach problems, super foggy head, headaches, and the same the day after that. The third day the cloud started to lift. I thought I had been getting the flu.

Now, I have this crazy traveling tingling feeling, I feel like I'm going crazy!!! It's been in three different places in three different days. It was around my knee, and then on my thigh and now today it is above my right eyebrow. I don't know how to describe it.... it's not painful, just like a persistent crawly kind of feeling. The area is small, like maybe the size of a quarter. It's freaking me out because I feel like it's some neurological problem. I assume that there is nothing I can do about this, because that's usually how these things work. What I'm hoping is that someone will chime in and say that this happened when they get glutened and I don't need to go have an mri. ;)

Anyone have any idea what I'm talking about? <pretty please!!>

Also - a moment of vent: Can someone please explain why every SINGLE social interaction must involve a meal of some kind?!!?!?!?! What is wrong with people that they can't just hang out, or go a couple of hours without having a MEAL?!?!?!?!?

Ahem.

I'm a people person, I promise. Just not a people-who-eat-gluten person.

:)


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



Celiac.com Sponsor (A8-M):



curlyfries Contributor

I know I used to get that tingly feeling too, before going gluten-free....I believe that was my knee and eyebrow. I would also get a feeling like someone had spilled water on me, usually on my shin, and sometimes I would swear I had a burn....usually on my forearm.

All better now :D my glutening reactions now are mostly intestinal.

RiceGuy Collaborator

What you describe is easily caused by certain nutrient deficiencies. It may be that your last glutening put you below the threshold for one or more nutrients. The two which come to mind first are B12 and magnesium. Both are vital for proper neurological function, though they are certainly not the only ones which may be involved. That's where I'd start, and I'd also consider B-complex, vitamin D, and maybe zinc.

HTH

stellar Newbie
So.

I *may* have gotten glutened last week. Had dinner at a friend's house and I know all the food was ok because I brought it, but may have gotten glutened somehow from knives or plates or something. Felt like *total* crap the next day - stomach problems, super foggy head, headaches, and the same the day after that. The third day the cloud started to lift. I thought I had been getting the flu.

Now, I have this crazy traveling tingling feeling, I feel like I'm going crazy!!! It's been in three different places in three different days. It was around my knee, and then on my thigh and now today it is above my right eyebrow. I don't know how to describe it.... it's not painful, just like a persistent crawly kind of feeling. The area is small, like maybe the size of a quarter. It's freaking me out because I feel like it's some neurological problem. I assume that there is nothing I can do about this, because that's usually how these things work. What I'm hoping is that someone will chime in and say that this happened when they get glutened and I don't need to go have an mri. ;)

Anyone have any idea what I'm talking about? <pretty please!!>

Also - a moment of vent: Can someone please explain why every SINGLE social interaction must involve a meal of some kind?!!?!?!?! What is wrong with people that they can't just hang out, or go a couple of hours without having a MEAL?!?!?!?!?

Ahem.

I'm a people person, I promise. Just not a people-who-eat-gluten person.

:)

stellar Newbie

I used to get the tingling sensation. It would start in my face and travel down my whole body. It would keep me up at night just because it was uncomfortable and "weird". This was before I was diagnosed November 2008 and now I just get it in my feet and hands on occasion. I'm not sure what triggers it because I am extremely careful about not consuming gluten.

ang1e0251 Contributor

The summer before I went gluten-free, I had those weird sensations on my upper arm. Like you say, it was about the size of a quarter. I'd forgotten about it until I read your post. My husband said it was a spirit contacting me! I'm sure it was a low on vitamins because I wasn't getting much out of what I was supplementing.

I haven't had them since so it was all part of the celiac disease package.

sansglutengrl Explorer

Wow! Thanks everyone, so I'm not crazy!

<cheers>

Angie, I laughed out loud when you said your husband thought it was a spirit contacting you! It does sort of feel like someone tapping on your shoulder or something!

Rice Guy - I'll bet you're right with the nutritional deficiency thing. Stupid question - is there any way they can "test" for those? I've thought a number of times that I've had magnesium problems (headaches, etc.), but I always wondered if there was some way to *know*.

Maybe I'll start another thread on this, but I have about fourteen thousand questions about these vitamin issues. What do you all do to make sure you're getting the right amounts of things? Just supplements, or is trying to get the nutrients through food first a better way? Which vitamins do you like best? How can you tell if they are working or not? At one point, I started some sublingual B-12 thinking it would improve energy, and all I got was a tingly scalp. Maybe I'm just a big wierdo. :)

I wasn't kidding about the 14,000 questions. ;)


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



Celiac.com Sponsor (A8-M):



TES Newbie
Wow! Thanks everyone, so I'm not crazy!

<cheers>

Angie, I laughed out loud when you said your husband thought it was a spirit contacting you! It does sort of feel like someone tapping on your shoulder or something!

Rice Guy - I'll bet you're right with the nutritional deficiency thing. Stupid question - is there any way they can "test" for those? I've thought a number of times that I've had magnesium problems (headaches, etc.), but I always wondered if there was some way to *know*.

Maybe I'll start another thread on this, but I have about fourteen thousand questions about these vitamin issues. What do you all do to make sure you're getting the right amounts of things? Just supplements, or is trying to get the nutrients through food first a better way? Which vitamins do you like best? How can you tell if they are working or not? At one point, I started some sublingual B-12 thinking it would improve energy, and all I got was a tingly scalp. Maybe I'm just a big wierdo. :)

I wasn't kidding about the 14,000 questions. ;)

I have about 14,000 questions too! It is so hard for my brain to get wrapped around this disease! I too have had wierd spots that are hot feeling or tingly, plus I had almost like an electric fence shock feeling that would actually pull the muscle or nerve, first the right side of body, then later... anywhere. Actually, that was my first symptoms, I thought I was having a stroke. Then later came so many more symptoms, gut, skin and brain. When I think back, I think my gut may have been different for the last 5 years, but I blamed it on my gallbaldder. What I am struggling with most is trying to figure if I am still getting into gluten, or if my body is healing, sometimes I experience gluten symptoms. It used to be every 3-4 days, now it is about 7-8 days, in between I feel "normal" and have no symptoms. The nerve thing is gone, but I have gut problems, followed by the skin on two fingers gets rough and cracks...so I'm thinking cc, but for the life of me, do not know where it is coming from.

RiceGuy Collaborator
Rice Guy - I'll bet you're right with the nutritional deficiency thing. Stupid question - is there any way they can "test" for those? I've thought a number of times that I've had magnesium problems (headaches, etc.), but I always wondered if there was some way to *know*.

What do you all do to make sure you're getting the right amounts of things? Just supplements, or is trying to get the nutrients through food first a better way? Which vitamins do you like best? How can you tell if they are working or not? At one point, I started some sublingual B-12 thinking it would improve energy, and all I got was a tingly scalp. Maybe I'm just a big wierdo. :)

Although there are tests for deficiencies which a doctor can have done, serum levels aren't always a good indicator of deficiency. Since one can supplement most nutrients without encountering problems, even if not deficient, I'd personally just try a supplement of whatever seems a likely deficiency.

When the digestive system isn't up to the challenge of breaking down foods completely, and absorbing the nutrients, supplementation is usually necessary. Unlike foods, supplements don't have to be broken down, and they are formulated for easy absorption. If you feel better after taking a supplement for a few weeks, then I'd say it's working.

As for the tingly scalp from the B12, I'm not sure I have any answer for you. What brand was it? Was it a liquid or a lozenge? My only thought is that there may have been something in it which didn't agree with your system.

Crystal795 Newbie

"Also - a moment of vent: Can someone please explain why every SINGLE social interaction must involve a meal of some kind?!!?!?!?! What is wrong with people that they can't just hang out, or go a couple of hours without having a MEAL?!?!?!?!?

Ahem. "

THANK YOU! AMEN!!!! *clapping*

I don't get it either.. Always has to be around food! "Let's do lunch!" "Hey, wanna have dinner tonight?" "How bout coffee?" - No, no and NO.

Unless everyone wants to come to my house, the answer is NO. I kid, I kid. I love socializing, but I think it's hilarious how many social gatherings revolve around food. I have learned to take "everything" and I mean "everything" with me. Forks, knives, spoons, plates, napkins, paper towels and of course, the food. It always makes for a good conversation starter and half the time, everyone ends up eating my food :P

The tingling is annoying, very annoying.. I think some of the suggestions provided have been very helpful. I'm low on D, Iron and Folic Acid.. maybe some other ones too, that I don't know about. But I usually notice the tingling along with eye floaters. No, the tingling isn't in my eye.. but for some reason they come in pairs. Tingling in left arm, eye floaters.. Tingling in the left leg, eye floaters.. Anyway, I think you can see the pattern..

Oh! How much protein are you getting?

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,328
    • Most Online (within 30 mins)
      7,748

    AndiSchweb
    Newest Member
    AndiSchweb
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.