Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Neuropathy And Celiac


mela14

Recommended Posts

mela14 Enthusiast

I went to a new PCP yesterday because of burning that I have been having in my legs. It has been getting really bad lately and in addition it has been happening more and more in other parts of my body. At first I thought it was just muscle reactions to accidentally eating gluten.

As most of you now I have been having a lot of challenges getting my diet sorted out with all the other food intolerances and have not been able to put on any more weight. I put on about 3 lbs but that's it!

I've been working really hard with the nutritionist at Columbia Presbyterian but have not been taking any vitamins because so many of them casue me problems with the additives, etc.

I explained all this and more to this new dr. At least he was on board with the celiac problem and feels that although my biopsy was neg he is pretty sure that i have it. when I told him the reason for me being there was the burning, sizzling, tingling that I have been getting in my legs .....which has now gotten really bad in my arms too. I also have a sizzling going down my right neck that becomes unbearable at times. He said that what i have is a neuropathy....so let's add that to the list too! He said the neuropathy cold be coming for vitamin deficiencies so he sent me for blood tests this morning. has anyone else had this and what's helped? He said that if I look ok nutritionally then we have to look at taking some type of antidepressant to calm down the "fired up nerves!"...which I really don't want to do. I don't do well with drugs! He suggested elavil but i remember not doing well with it a few years ago. I also tried nortryptaline....but that just made me loose my hair and I had to go off of it.(something I won't sacrifice for the meds!)

I had my hubby give me a shot of b-12 tonight just for a boost but am not sure it will even help at this point. The burning is really bad..........and it is scaring me! I have to wait for the results...and am afraid that they results won't show any deficiencies. I had vit levels run about 5 months ago and they were all fine.

I was referred by columbia Presbyterian to a compounding pharmacist who I spoke with today on the phone. He is sending me Calcium (powder to mix with water)...for the osteoporosis that i have, a multi, and a b complex. all are gluten-free and also free of other allergens. I am excited to be getting them and hope that I will be able to tolerate them. I know I NEED to take vitamins as my diet is pretty limited and I am sure that I am not getting enough nutrition....even though previous blood work looked ok!

Even if the test results come back ok......I have to say that I just don't feel right..........between the sizzling, fatigue, muscle burning and pain...something is wrong. has anyone had this happen to them? and what did you do? I know that vit def are common among celiacs.........I'm just upset that if this is what it is....that it got to this point! I'm stressed over being my own dr....It just takes me too long to figure things out with the limited amount of medical knowledge that I have. :angry:

Any thoughts? <_<


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,193
    • Most Online (within 30 mins)
      7,748

    Jodidodd
    Newest Member
    Jodidodd
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • WednesdayAddams13
      Hello,   I contacted the makers of Alpine Original Spiced Cider Drink Mix and they sent me this email.....   Subject: [EXTERNAL] Fw: Ref. ID:1335211 Alpine Original Spiced Cider Drink Mix.               On Friday, December 6, 2024, 1:04 PM, Consumer <baking@continentalmills.com> wrote: December 06, 2024   Dear Janie, Thank you for taking the time to contact us regarding our Alpine Original Spiced Cider Drink Mix. We appreciate your interest and are happy to provide you with additional information. This product does not contain gluten. However, it is not manufactured in a gluten free facility. If I can be of further help, please contact me at 1 (800) 457-7744, weekdays 7:00 a.m. to 4:00 p.m. (PT), or visit www.alpinecider.com and select "Contact Us." Sincerely, Kristin Kristin Consumer Relations Specialist Ref # 1335211   I hope this helps everyone.  I am currently looking for a spiced hot apple cider drink and have yet to find one that is not made in a plant that manufactures other gluten products.  It's so frustrating. 
    • trents
      @Rogol72, dermatitis herpetiformis occurs in a minority of celiac patients and if the OP hasn't developed it yet I doubt it will show up in the future. I think it unwise to use a scare tactic that probably won't materialize in the OP's experience. It has a good chance of backfiring and having the opposite effect.
    • Rogol72
      Hi @trents, You're correct. The OP mentioned fatigue and vitamin deficiencies as the only symptoms at the time of diagnosis. Since the family are not taking him/her seriously and find them to be too fussy, I suggested showing them pictures of dermatitis herpetiformis as one of the consequences of not taking the gluten-free diet seriously ... would make life easier for him/her, and the family might begin to take his/her strict gluten-free diet more seriously. A picture says a thousand words and the shock factor of dermatitis herpetiformis blisters might have the desired effect. The OP did say ... "How do you deal with people close to you who just refuse to understand? Are there any resources anyone could recommend for families that are short and easy to read?".  @sillyyak52, It might also help mentioning to your family that Coeliac Disease is genetic and runs in families. Any one of them could develop it in the future if they have the HLA DQ 2.5 gene. Here's a Mayo Clinic study calling for screening of family members of Coeliacs ... https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-celiac-disease-screening-for-family-members/ https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-study-calls-for-screening-of-family-members-of-celiac-disease-patients/ I got glutened a few months ago because I missed the may contains statement on a tub of red pesto. It was my own fault but it happens.
    • peg
      Thank you, Scott!  This is just what I needed.  Appreciate your site very much and all of your time and energy that goes into it! Kind Regards, Peg
    • Hopeful1950
      Oh yes.  I would never recommend taking it for an extended period of time.  When 70% of my body was covered in blistering itchy sores, an amazing doctor prescribed it diagnostically because I was unwilling to do a gluten challenge after already going strictly gluten-free in desperation after 10 years of suffering and being poo pooed by dermatologist after dermatologist. The fact that it stopped the itch and mostly cleared the rash after about 2 months was diagnostic for him.  I stopped it and have remained strictly gluten-free with very few flares since that time (over 10 years ago).  So the fact that it cleared the rash was diagnostic for me.     
×
×
  • Create New...