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

numbnes, pins and needles... after gluten free diet


artsunshine

Recommended Posts

artsunshine Apprentice

Hi,

its been more than month since my diagnosis and I can confirm: My HORRIBLE bone pain completely went away. I am taking high doses of D vitamin. I was so optimistic! I adapted to gluten free diet quite well and my life went back to normal. Untill,... my tingling in legs, hands became worse. My doctor said it is probably B12 vitamin, so i was not worried too much and she sent my blood to test for b12. I am very sad as it came back completely normal. My other blood work also came back normal, except ferritin, which is worse- 6, but hemoglobin is normal.  I am so scared what does that mean? Neuropathy? MS? Any suggestions?  I am so sick and scared what might be next.  My other problems are: fatigue (i have to take a nap every day), brain fog, numb hands or legs. I have to say it is not always on the same side of the body. I am so scared it is MS. Any suggestions what to do? Thank you for your replies. 


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Glad to hear your bone pain resolved so quickly!  

Let's realistic.  It take TIME to heal.  One month into the gluten-free diet?  Not enough time to heal.  Nerve damage takes the longest.  Most forum members will report that it takes over a year to feel really well.  

I had leg tingling, numb fingers, itchy skin (no rash), eczema areas.  All that took a year to resolve.  When glutened, those symptoms return.  My vitamin levels were normal.  Took three months for my ferritin level to hit the normal range.  My hemoglobin level bounced back much faster.  

Keep taking your naps when you can.  Your body must need them to heal.  Make sure your thyroid is working well as that can contribute to fatigue.  Remember, your hemoglobin can drop fast.  So, just one lab reading is just a glimpse or a picture for just that day.  .  One menstrual period and you could be back to square one.  This will resolve as you heal and build your ferritin level (absorb iron).  

The learning curve for the gluten-free diet is steep.  You are on a roller coaster.  You will have ups and downs because you are going to make mistakes (everyone does).  Just keep moving forward.  ?

deb445 Rookie

I thought of MSM as a supplement, and Magnesium. It helped my son with the pins and needles and aching legs. 

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,741
    • Most Online (within 30 mins)
      7,748

    Kaz 1
    Newest Member
    Kaz 1
    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

    • Theresa2407
      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
×
×
  • 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.