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

Gluten Related Neurological Conditions


FreyaUSA

Recommended Posts

FreyaUSA Contributor

I've been reading up on the neurological effects of gluten sensitivity by some people. It appears that elevated IgG alone along with a positive HLA DQ2, DQ8 or DQ1 marker are being recommended for a gluten free diet as well by some doctors studying this aspect.

From: Gluten sensitivity as a neurological illness by M Hadjivassiliou, R A Gr


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator
;) i guess i am a test sample here------i had all of the gut reactions to celiacs, plus i have the numbing of the extremities--i was diagnosed as having carpel tunnel and when i complained of this sore spot in my shoulder and numbing in my toes, i was told by this same doctor that there is one muscle that runs through our bodies from out hands to our toes and all of this is connected--i did have the typical prob of waking in the night with my hands sleeping and that's when i was prescribed the hand braces and anti-inflamatories for the pain--it was later that the shoulder and numb toes came into play and this was all before i went gluten-free--i also suffered from chemical imbalances that caused me to have panic attacks, border line agoraphobia, anticipatory anxiety for which i was prescribed xanax 1st--they told me to take 4 a day and i could not hardly walk when i could stay awake, so then i took it as needed--which didnt help in daily life--later they put me on paxil--just before going gluten-free i was taking 40mg a day and was barely getting by--after gluten-free, i weaned myself off of paxil and very rarely have a panic attack now---i know all of these problems are connected to the celiacs--someday i want to have the enterolab test done, but for now, they are to costly--- ;) did i give you anything to think about B) deb
stef-the-kicking-cuty Enthusiast

I have had (and still have) problems like that. My hands and arms are "falling asleep" regularly and it tingles and stuff. I have problems with my muscles as well. They don't really build up. And my right eyelid hangs down, when i get tired. And before i was diagnosed, sometimes, when i was working out i had a pain shooting down my right leg, just as when you have sciatica. But then i was diagnosed and i never had it again. Though my i still hangs down sometimes, but that has become very rare now. The only thing i didn't get rid of (yet), is the tingling and falling asleep in my arms and hands.

Stef

tarnalberry Community Regular

Yep. It'll be nice when they've gotten some medical-community acceptance of tests that can identify GI before significant damage to the intestines has been done - or in cases where it doesn't seem to be happening.

  • 2 weeks later...
mswift Newbie

This is a timely topic for me. I was diagnosed with Celiac in July 2003. I told my Mom, Dad, and Sister to think about getting checked since it's genetic. We thought it came from my mom's side as she and her mom have some digestive issues (diagnosed with collagnous colitis and IBS), but my Mom ended up negative on blood and endoscopy tests.

My Dad wasn't having any of the symptoms I had(which were many), so he wasn't concerned. However, he finally went in to get his soar knees checked this month. They had been bothering him for 2 years, but was avoiding the doc as the last time he had knee issues he had to have cartilage surgery. His doc didn't find anything specific to his knees, so he sent him to a neurologist, who discovered that my Dad had no feeling in his toes. A later blood test showed vitamin B12 deficiency, which can cause nerve problems. My Dad then told the doc that I had been diagnosed with Celiac. A second blood test resulted in a positive for Celiac. He's now scheduling an endoscopy with a GI doc.

Also, I had never made this connection, but the last few years I have had problems with my arms and legs getting numb a lot more frequently than they had in the past. It has not gotten worse since going gluten-free, but the problem is still there.

Interesting.

Thanks,

Mike

strack2004 Rookie

I have tingling in hands and toes plus a sort of numbness on the left side of my face. I have not been diagnosed with celiac, but am using an SCD diet anyway. So far no effect on tingling, etc. Do have more energy and sleep better generally. Ruth S. Strack2004

FreyaUSA Contributor

After 8 months I can say that the numbness and tingling in my arms and hands (pretty much my right arm and hand) hasn't decreased much if at all. HOWEVER, my sister, who isn't on a gluten-free diet and with whom I'd told about the hand problem 8 months ago (she said she has the exact same thing) just called a couple days ago because she noticed she's beginning to notice the same thing happening in her feet. I'm hoping, even though my hand still has problems, that it wont get any worse.

Stef, my father had the droopy eye lid problem, too, along with the numbness (that eventually crept to mid-thigh) and many, many other neurological manifestations that seem to corrolate to gluten neuropathy. I am so glad you and your doctors figured out what was happening to you before it was too late. One by one my father's system shut down, it was horrible and frustruting for him and for us.


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

freyausa--have you ever read about sjogrens disease-i think that is how it is spelled--it may be very interesting to you--it was to me----i was diagnosed with carpel tunnel and after a few years i complained of my toes going numb and then i would get this bunch in my shoulder and i was told that the muscles in your hands and feet are all connected and the shoulder was in that path--i now believe it is neuropathy--but you should read up on this disease ;) deb

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,857
    • Most Online (within 30 mins)
      7,748

    LowellFrancis
    Newest Member
    LowellFrancis
    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

    • Rogol72
      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • 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.