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
      131,855
    • Most Online (within 30 mins)
      7,748

    Tara M
    Newest Member
    Tara M
    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

    • 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    
    • Me,Sue
      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • 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.