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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,546
    • Most Online (within 30 mins)
      7,748
    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    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

    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. 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: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
×
×
  • 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.