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 Free Almost 2 Days Now

Aleshia

Recommended Posts

Aleshia Contributor
Aleshia
Posted

ok one of my symptoms is my feet/legs and hands/arms go numb... I have just started being gluten free (on day 2 now) and that symptom is getting worse, for the most part my brain fog and tummy troubles seem to be getting better but my legs are numb just from sitting now and my hands feel cold and numb just sitting here typing (in the recliner with my laptop) usually this only happens if I have been sitting for long and my laptop is on a table or some other higher surface than my lap or when I am sleeping on my side... also I don' know if anyone else gets this but my head goes numb... I feel like that shouldn't even be possible but my head is numb and tingly especially above my ears and my neck is too just at the base of my head.... very weird... anyone know anything about this???

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

Have you been tested for nutritional deficiencies? It sounds like you may need a good vitamin B complex, lack of B vitamins can cause those symptoms, especially B12 and B6.

You might also want to try seeing a good chiropractor. I've had numbness in parts of my body before (especially my hands, it would start in the fingertips and slowly move up my hands), and it was due to a cramped muscle that has a nerve going through it. When my chiropractor massaged it every time I saw him, my hands got much better, and were fine in a couple of weeks.

Plus, if you have one of your vertebra misaligned (a subluxation), it can squeeze nerves and can cause numbness as well.

Also, it may be neuropathy from celiac disease (caused by deficiencies). Again, being on the gluten-free diet and taking supplements is a must. But it may take a while for it to get better.

Aleshia Contributor
Aleshia
Posted
  • Author
Have you been tested for nutritional deficiencies? It sounds like you may need a good vitamin B complex, lack of B vitamins can cause those symptoms, especially B12 and B6.

You might also want to try seeing a good chiropractor. I've had numbness in parts of my body before (especially my hands, it would start in the fingertips and slowly move up my hands), and it was due to a cramped muscle that has a nerve going through it. When my chiropractor massaged it every time I saw him, my hands got much better, and were fine in a couple of weeks.

Plus, if you have one of your vertebra misaligned (a subluxation), it can squeeze nerves and can cause numbness as well.

Also, it may be neuropathy from celiac disease (caused by deficiencies). Again, being on the gluten-free diet and taking supplements is a must. But it may take a while for it to get better.

no, I haven't been tested for anything cause "its all in my head" and I "just need antidepressants" :angry: they won't even do a bone density scan or anything. I've lost 2 inches of height and nobody will do anything about it!! I've got all kinds of problems and nobody will do anything and I'm just tired of being this way... I feel like I'm falling apart... like I'm not gonna live past 50 or something... I'm only 30 and I have so many symptoms... something is definitely wrong whether it is celiac disease or something else... I just want someone to diagnose me with something other than a mental problem!! (sorry for ranting and thanks for replying to me) I haven't seen a chiropractor for about 16.5 mo. now. I don't know if our insurance covers it or not

gfpaperdoll Rookie
gfpaperdoll
Posted

You might try keeping a food journal - it could be from another food you are eating - or drinking - also have you checked your personal care products?

I would insist on at least a bone scan & a brain scan - does not hurt to check out the brain with a situation like that - just to check.

I also agree with Ursa - check your vitamin & mineral levels & you should take B12 regardless... & probably D...

Ursa Major Collaborator
Ursa Major
Posted

And you may want to change doctors. If your current doctor is such a bonehead to not even order testing for a bone density scan and is too stupid to understand that celiac disease often causes osteoporosis, and that osteoporosis causes your spine to compress and hence you lose height, then he is useless as a doctor. Plus too narrow minded to listen and taking your symptoms seriously. Any doctor that tells you it is all in your head deserves to be fired.

By the way, your baby is adorable!

Aleshia Contributor
Aleshia
Posted
  • Author
And you may want to change doctors. If your current doctor is such a bonehead to not even order testing for a bone density scan and is too stupid to understand that celiac disease often causes osteoporosis, and that osteoporosis causes your spine to compress and hence you lose height, then he is useless as a doctor. Plus too narrow minded to listen and taking your symptoms seriously. Any doctor that tells you it is all in your head deserves to be fired.

I have had one doctor say that it is probably just the discs being thinner than they used to be one who said that it is nothing to worry about and that height is a difficult thing to measure... whatever... and one who said it is all in my head and that they can't treat any symptoms until I am on antidepressants...

By the way, your baby is adorable!

thanks :) that photo was taken when he was about 4 months old... he is still about the same size... 2 pounds heavier... maybe an inch or 2 taller... and he's 17 months now. but he's on the 90th percentile so ... "nothing to worry about"

RiceGuy Collaborator
RiceGuy
Posted

I agree with the suggestion of supplements also. Besides the B12, you may want to try magnesium and zinc. I'm sure there are other that might help, but those come to mind first, based on experience and research.

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

Celiac.com Sponsor (A8-M):


dbmamaz Explorer
dbmamaz
Posted

From what I've read it seems like neuropathy (tingling) caused by celiac is often one of the last symptoms to go away, and can take years - tho usually they talk about it in extremeties, not in the head.

When I quit gluten and diary (at the same time) my withdrawal symptoms were to feel kinda dizzy for over a week. Not quite dizzy, but like why you have a fever or your high, and colors look slightly off and your head is fuzzy?

If you respond well to the gluten-free diet, you may want to try putting your baby on it too, if you feel he's not growing.

jerseyangel Proficient
jerseyangel
Posted

You've gotten some good advice on supplimenting.

I had the tingling and numbness in my legs, feet, left arm and face. The first week gluten-free, it seemed to get worse to the point where I called my doctor on a Friday night fearing I might be having a stroke.

It did gradually get better, but it takes a while. I would say that after about 6 months most of it was gone except the facial numbness. That took the longest and even after almost 3 years. I still get it if very tired or glutened.

mommida Enthusiast
mommida
Posted

I suggest you get some glaceau vitamin water (calcium, potassium and magnesium added) and some sublingual B12 supplements. The supplements should be easily absorbed taht way and you should notice some improvement.

I've had my head feel like alka seltzer fizz before, so I know what your talking about. I think you might be anemic for that symptom.

I hope you feel better soon! :)

mammajamma Rookie
mammajamma
Posted

Lots of good suggestions here. I also kind of feel as if I am going through withdrawl...

I am surprised to read, however, about the fact that your dr. did not insist on a bone density test him (her)self!!! Especially with the shrinking height! I'd insist on that or find a new dr., one who is more educated re: celiac!

Aleshia Contributor
Aleshia
Posted
  • Author
I am surprised to read, however, about the fact that your dr. did not insist on a bone density test him (her)self!!! Especially with the shrinking height! I'd insist on that or find a new dr., one who is more educated re: celiac!

I can't seem to get anyone to take it seriously. I have seen at least 3 doctors about it since finding out I had in fact lost height (and that my husband didn't just seem taller than he used to) #1 told me its just the discs in my back but didn't test anything #2 said its too hard to measure 2 inches and #3 said I just need antidepressants and that she won't treat any of my symptoms until I am on them. have another appt. with dr. #1 on the 8th (she seems to be a good dr. for most things so will give her another chance and get her to do some more tests) and also with a new dr. who's "clinical intersts" include celiac disease. also have a reference coming (they said it will take 3 weeks to just get the call to get an appt.) for a dr. who is the head of the dept. of digestive diseases at the university of washington or at least one of the other dr.s for that dept. if those all fail I will try to go to it from the other side of things and find a dr. who specializes in bone loss or bone disorders... and see if I can get it figured out why I lost height and have bone pain... if I can get a diagnosis of osteoporosis then maybe someone will look at the celiac disease thing a bit closer... hopefully... I don't really care if celiac disease is the answer... I just want AN answer... any answer will do as long as it is the right one and will solve the problems I'm having with my health

mammajamma Rookie
mammajamma
Posted
I suggest you get some glaceau vitamin water (calcium, potassium and magnesium added) and some sublingual B12 supplements. The supplements should be easily absorbed taht way and you should notice some improvement.

I've had my head feel like alka seltzer fizz before, so I know what your talking about. I think you might be anemic for that symptom.

I hope you feel better soon! :)

To add to that suggestion... my mom has been dx about 5 years now... just recently she started drinking a bottle of Gatorade every day... she keeps saying that she's never felt better in her life! (Yes, Gatorade is gluten-free)

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. Celiac.com Sponsored Post
      0

      An Inclusive Valentine's Day: Easy Tips for a Celebration Everyone Can Enjoy

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

      IBS-D vs Celiac

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

      IBS-D vs Celiac

      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...
    4. knitty kitty
      - 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.

      @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...
    5. Jane02
      - 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.

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

  • Member Statistics

    • Total Members
      133,338
    • Most Online (within 30 mins)
      7,748
    Erica Johnson
    Newest Member
    Erica Johnson
    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
      IBS-D vs Celiac

      By trents · Posted

      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
      IBS-D vs Celiac

      By SilkieFairy · Posted

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

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

      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.