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.

  • 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. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

    2. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    3. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

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

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748

    bttyknight83
    Newest Member
    bttyknight83
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
×
×
  • 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.