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

Numb Hands From A gluten-free Diet? Or Is It A Symptom?


LundqvistSaves

Recommended Posts

LundqvistSaves Rookie

Hi all-

Been sick for a year now, gained 30lbs, heatburn, bloating 24/7, the works. Despite stumping two well-regarded gastros and enduring all procedures, they still can't figure me out. So I started going strictly gluten free 2 weeks ago.

A week in, I noticed a weird rash on my finger. Eventually went away the very next day. My stomach pain is still constant, everyday bloating and upper GI pain. Taking nexium right now. But the weirdest thing was I noticed my hands were a little numb. It started with my right pinky and ring finger getting numb and tingly on memorial day, since then it comes back from time to time, on my left hand now also. This has all never happened to me before (25 year old male in otherwise good health).

I looked it up on the forum and it seems like this is a common symptom for celiacs, but as I read more it looks like people were saying it was a reaction to a lack of nutrients (like B12) simply from a gluten free diet. I'm confused -- is it a sign that I am gluten intolerant, or is it just my body reacting from the diet that I'm on regardless of if I am a celiac or not? If anything, I was hoping it would be an indicator that I do, in fact, have some gluten allergy.

It's also weird how random my symptoms come on, including the numbness. One would think they flare up because I'm ingesting gluten, but I'm 99% certain that I am absolutely not taking in any gluten from anywhere. I'm on my third week, and my stomach is still a painful mess, but I'm hoping this works. The doctor said I can do a celiac sprue blood test, but doing that requires me to abandon all my progress already.

Anyone with any experience? Thanks.


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



Celiac.com Sponsor (A8-M):



mommida Enthusiast

If you are already gluten free, don't bother going for a blood test.

Having a B12 defiency can be very common. Most gluten containing processed foods are fortified to have more vitamins and minerals. (most gluten free procesed products are not..Yet) The point is somehow your are not consuming enough or your gut is not absorbing enough. There is also a condition, Pernicious anemia, that is associated with Celiac. Very common for Celiacs to have Pernicious Anemia. The damaged gut lining does not have the intrinsic factor to process vitamin B12. So it would be safe for you to supplement vitamin B12, because there is no known toxic level for a body (it will be flushed out of your system before it reaches a toxic level).

Some vitamin and nutrient supplements need to be monitored closely by a doctor. ;)

frieze Community Regular

do you have any neck/shoulder problems, because it sounds more like TOS then carpal tunnel.

LundqvistSaves Rookie

do you have any neck/shoulder problems, because it sounds more like TOS then carpal tunnel.

I don't, it just seems to be some numbness in my hands now and again. No pain or anything like that.

LundqvistSaves Rookie

If you are already gluten free, don't bother going for a blood test.

Having a B12 defiency can be very common. Most gluten containing processed foods are fortified to have more vitamins and minerals. (most gluten free procesed products are not..Yet) The point is somehow your are not consuming enough or your gut is not absorbing enough. There is also a condition, Pernicious anemia, that is associated with Celiac. Very common for Celiacs to have Pernicious Anemia. The damaged gut lining does not have the intrinsic factor to process vitamin B12. So it would be safe for you to supplement vitamin B12, because there is no known toxic level for a body (it will be flushed out of your system before it reaches a toxic level).

Some vitamin and nutrient supplements need to be monitored closely by a doctor. ;)

Thank you for all of that great info. So basically, having that symptom is not always a deciding factor of a gluten allergy. I have a few symptoms and was hoping this would be the tell-all, but thanks for clarifying. ANy recommendations of how much B12 to take daily to start out with?

LundqvistSaves Rookie

If you are already gluten free, don't bother going for a blood test.

Having a B12 defiency can be very common. Most gluten containing processed foods are fortified to have more vitamins and minerals. (most gluten free procesed products are not..Yet) The point is somehow your are not consuming enough or your gut is not absorbing enough. There is also a condition, Pernicious anemia, that is associated with Celiac. Very common for Celiacs to have Pernicious Anemia. The damaged gut lining does not have the intrinsic factor to process vitamin B12. So it would be safe for you to supplement vitamin B12, because there is no known toxic level for a body (it will be flushed out of your system before it reaches a toxic level).

Some vitamin and nutrient supplements need to be monitored closely by a doctor. ;)

Thank you for all of that great info. So basically, having that symptom is not always a deciding factor of a gluten allergy. I have a few symptoms and was hoping this would be the tell-all, but thanks for clarifying. ANy recommendations of how much B12 to take daily to start out with?

mommida Enthusiast

Celiac/gluten sensitivity/intolerance and DH can damage the gut lining and there is a known connection to Pernicious anemia. If you are having and issue with B12 being absorbed it could be a side affect from a gluten issue.

It would be best to get medical testing to see if and how low your B12 level is. The doctor can give you an injection. Sublingual B12 has shown to be as effective. If your body doesn't need the B12 you would just pass it out of your system. High amounts could cause the "D".


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



Celiac.com Sponsor (A8-M):



LundqvistSaves Rookie

Celiac/gluten sensitivity/intolerance and DH can damage the gut lining and there is a known connection to Pernicious anemia. If you are having and issue with B12 being absorbed it could be a side affect from a gluten issue.

It would be best to get medical testing to see if and how low your B12 level is. The doctor can give you an injection. Sublingual B12 has shown to be as effective. If your body doesn't need the B12 you would just pass it out of your system. High amounts could cause the "D".

Thanks for your reply. I've only been gluten free for two and a half weeks, so I'm not certain if that's enough time for a gluten-free diet alone to cause any B12 deficiencies. Also taking a gluten-free daily multivitamin. Was hoping for the possibility that a long-time misdiagnosis of a gluten allergy or intolerance would be the culprit, thus my other symptoms would finally have an explanation as well.

Thanks for your help!

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 SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    2. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    4. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    5. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

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

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748

    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    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

    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
×
×
  • 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.