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

Numbness And Tingling....docs Dont Know...help Again Please!

Holly4

Recommended Posts

Holly4 Rookie
Holly4
Posted

I recently got a weak positive on my deamidated gliadin and a strong positive on my tissue transglutaminase. I have numbness and tingling in my hands and feet that seems to be getting worse! My right hand pinky is completely numb. My doc thought is was a b-12 deficiency but my b-12 was good. All my vitamin levels are okay. Does that mean its not celiac? I thought celiac meant you couldn't absorb nutrients. I am scheduled to get a biopsy done in a few weeks, so I guess I cant eat gluten-free yet. Has anyone had this problem with numbness?

I am also really light-headed and dizzy. Is this a common symptom of celiac or not? I also suffer from constipation :( and have started having a hard time swallowing. My blood tests showed a low level of TSH. Is thyroid related to celiac?

I wish the doctors around here knew more about celiac. I'm really nervous about my hands and feet and sometimes I get numb up to my elbows and quads. Does eating gluten make it hard for anyone to hold a pen or type or spray hairspray etc? Please respond if any on this makes any sense!

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Here is some information that you might find interesting:

Open Original Shared Link

shopgirl Contributor
shopgirl
Posted

Not all Celiacs have vitamin deficiencies. I was undiagnosed for quite some time and all my vitamin levels checked out as within normal range.

And constipation was my number one symptom.

Wolicki Enthusiast
Wolicki
Posted

I had all your symptoms and more. I tingled from head to foot, especially my cheeks and the backs of my knees. It got better right away, but took about 6 months on a strict gluten free diet to resolve. I still get a bit from time to time, but it's barely noticeable.

Many celiacs have thyroid issues. Since you have tested positive (blood test false positives are very rare) be sure to be tested for thyroid antibodies. And get the exact levels of your vitamins. My B12 was in the "normal" range, but very low. I had about 10 injections and took subligual b12 for 8 months before I felt normal.

cassP Contributor
cassP
Posted

yes all those things (B12 & vit deficiencies, Thyroid disorders) can all come with Celiac. or they could all be seperate too. make sure you get copies of your results to understand them yourself- because like above poster said- your B12 could be "within range" but only be like 250 which is most definitely low enough to cause the numbness in your hands and feet.

your TSH number should be low. it should really be between 1-3. did u get your thyroid checked??? because even tho my constipation improved after going gluten free- it GREATLY improved after i started meds for my Hypothyroid.

good luck

ravenwoodglass Mentor
ravenwoodglass
Posted

yes all those things (B12 & vit deficiencies, Thyroid disorders) can all come with Celiac. or they could all be seperate too. make sure you get copies of your results to understand them yourself- because like above poster said- your B12 could be "within range" but only be like 250 which is most definitely low enough to cause the numbness in your hands and feet.

good luck

I agree with this. I was told my B12 was fine, it was about 252 or so at diagnosis. Definately to low. Also if you take a multi with folate that will make the B12 look higher than it actually is. You may want to try a subligual B12, it won't mess with your celiac testing but may help with those tingles until you are done testing and can go gluten free. With positive blood work even if the endo is 'negative' you should still get on the diet.

joshnjustinsmom Rookie
joshnjustinsmom
Posted

I am also really light-headed and dizzy. Is this a common symptom of celiac or not? I also suffer from constipation :( and have started having a hard time swallowing. My blood tests showed a low level of TSH. Is thyroid related to celiac?

*****I don't know why the above didn't show the OP's text in the quote block, hmmm******

Hi there! You aren't alone with this symptom. I don't know how much help that I can be because I am still awaiting biopsy results and had a negative blood test, but near the top of my symptoms list that need to go away is dizziness and light-headedness as well. I can go a week without much of a problem with it or I can go a week without being able to stand upright without feeling like I'm going to pass out.

Assuming that they have ruled out other possible causes of this for you (i.e. heart or neurological problems), my understanding is that Celiac can cause this to happen.

For me, I have had many tests and my heart and brain are fine. I am convinced that my problems are a direct result of either Celiac, food intolerances, or food allergies. Maybe even all of the above. Hugs, I hope you start feeling better soon!!

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

Celiac.com Sponsor (A8-M):


cassP Contributor
cassP
Posted

I am also really light-headed and dizzy. Is this a common symptom of celiac or not? I also suffer from constipation :( and have started having a hard time swallowing. My blood tests showed a low level of TSH. Is thyroid related to celiac?

*****I don't know why the above didn't show the OP's text in the quote block, hmmm******

Hi there! You aren't alone with this symptom. I don't know how much help that I can be because I am still awaiting biopsy results and had a negative blood test, but near the top of my symptoms list that need to go away is dizziness and light-headedness as well. I can go a week without much of a problem with it or I can go a week without being able to stand upright without feeling like I'm going to pass out.

Assuming that they have ruled out other possible causes of this for you (i.e. heart or neurological problems), my understanding is that Celiac can cause this to happen.

For me, I have had many tests and my heart and brain are fine. I am convinced that my problems are a direct result of either Celiac, food intolerances, or food allergies. Maybe even all of the above. Hugs, I hope you start feeling better soon!!

what exactly was your TSH number- because it may have been within range- but high enough to indicate Hypothyroid-

im asking- because constipation and difficulty swallowing can both be typical for Hypothyroid..

in the past i had issues with getting dizzy when i stood up... A LOT... it seems to have improved since going gluten free

joshnjustinsmom Rookie
joshnjustinsmom
Posted

what exactly was your TSH number- because it may have been within range- but high enough to indicate Hypothyroid-

im asking- because constipation and difficulty swallowing can both be typical for Hypothyroid..

in the past i had issues with getting dizzy when i stood up... A LOT... it seems to have improved since going gluten free

Hey CassP

Thanks for your thoughts and help!!

For me, my TSH is 1.15, and my Doc is know for treating subclinical thyroid issues, so I'm thinking that (I'm hoping that) he would've picked up on thyroid issues. Maybe the OP has an elevated TSH.

My lightheadedness is seemingly random. I do have the "dizzy upon standing up" symptom, but also I could be just walking around, or standing at the sink or whatever and feel like I'm going to pass out (eyesight goes, ears ring, heart races, feel weak, and feel a downward pulling) that only lying down helps. This also happens when trying to work out at the gym, so I don't anymore. I'm hoping that gluten-free (or even free of my known food allergens) will solve this symptom because it is really limiting and irritating.

rosetapper23 Explorer
rosetapper23
Posted

Here is a URL that lists the symptoms of nutrient deficiencies:

Open Original Shared Link

You'll see that numbness of limbs (paresthesia is the technical name) can be caused by calcium and/or phosphorus deficiencies. Also, dizziness can occur from deficiencies in B-2 and/or manganese. You might wish to ask your doctor to check these nutrients.

Archived

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

Go to topic listing

  • 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. Jane02
      - Jane02 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

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

      Hello, I'm very discouraged. I've been trying to find a safe vitamin mineral supplement brand for months and am tired of testing one after the other and experiencing my typical 'glutening' reactions. I'm really feeling the nutritional deficiencies set in. I'm doing the best I can to get these nutrients from my food, although it's impossible for me to...
    2. knitty kitty
      - knitty kitty commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      3

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      I worried at one point on my journey whether I had MS, having many of the symptoms myself. However, my symptoms improved dramatically with high dose thiamine hydrochloride, Benfotiamine, and Thiamine TTFD. Thiamine deficiency symptoms overlap with MS symptoms, including changes on brain MRIs. Thiamine deficiency affected my eyes (light sensitivity),...
    3. trents
      - trents replied to Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products...
    4. Matthias
      - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing...
    5. trents
      - 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?

      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_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,330
    • Most Online (within 30 mins)
      7,748
    PattyPagnanelli
    Newest Member
    PattyPagnanelli
    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

    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Hello, I'm very discouraged. I've been trying to find a safe vitamin mineral supplement brand for months and am tired of testing one after the other and experiencing my typical 'glutening' reactions. I'm really feeling the nutritional deficiencies set in. I'm doing the best I can to get these nutrients from my food, although it's impossible for me to intake enough vitamin D as I can't have dairy and have insufficient sun exposure in the northern hemisphere. I've tried B Complex from Country Life (certified gluten-free) - horrible reaction. I've tried Metagenics vitamin D tab (certified glute-free) - bad reaction. I've tried liquid vitamin D Thorne and D Drops - reactions were mild since I tried a drop of a drop. I understand there could be other things I'm reacting to in my diet, although my diet/intake is pretty consistent with minimal variables so I do think it's something in these supplements. I understand I could be reacting to the active ingredient vitamin/mineral itself or even the filler ingredients. I tried the vitamin D drops since the only filler ingredient is coconut oil, in some brands, which I know I can tolerate really well on its own - I cook with coconut oil frequently and have no 'glutening' reactions at all. Perhaps I'm reacting to the vitamin D itself, although I eat fatty fish every few days, an entire fillet with no 'glutening' reactions, which contains anywhere between 400-600 IU per fillet so I shouldn't be sensitive to vitamin D. All this to say, I'm desperately looking for at least a safe vitamin D supplement. Does anyone know of a safe vitamin D supplement brand? I'd love to know if there are any supplement brands that have absolutely no gluten (especially in flour form) in their facilities. I've heard of Kirkman having no grains in their facility - I may try this brand. Has anyone reacted to this brand?   
    • trents
      Unexpected gluten exposure risk from cultivated mushrooms

      By trents · Posted

      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      Unexpected gluten exposure risk from cultivated mushrooms

      By Matthias · Posted

      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      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
      IBS-D vs Celiac

      By Scott Adams · Posted

      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.
×
×
  • 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.