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

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

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
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

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

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
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

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

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

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

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

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
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
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.

  • 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. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

    2. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

    3. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    4. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      2

      Heat intolerant... Yikes


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,151
    • Most Online (within 30 mins)
      7,748

    Travis25
    Newest Member
    Travis25
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
×
×
  • 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.