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

Help!

BmariedRN

Recommended Posts

BmariedRN Newbie
BmariedRN
Posted

I'm new to this and have never posted on a forum before or cared to read any... There's a first for everything! I was diagnosed with Lyme disease .. Treated... And a bunch of crazy symptoms have continued. At first I thought it was still Lyme but now I'm not so sure. Needless to say I've been seeing a natural doctor have found out I'm "sensitive to gluten" through an IGG test ( not always reliable according to some doctors ). I've been trying to eat gluten free to see if all my symptoms start to go away. 

Here is my list of symptoms:

24 hour twitching in my legs (sometimes other random spots on my body) 

creepy crawly feeling in my extremities 

brain fog/head rush when I stand up sometimes

tinnitus 

muscle / bone pain

extreme depression at random times

different sized pupils (sometimes) 

Random pains in my head

forgetting words- forgetting what I was going to say ALL THE TIME

panic attacks / anxiety (which I've NEVER had before) 

HEART PALPITATIONS LIKE CRAZY- noticed especially after drinking 

and the most recent/annoying symptom neck pain/ feels like my lymph nodes are stinging (wondering if anyone else has felt this) 

lymph nodes in neck are swollen and pea sized

oh- and I just have been recently diagnosed with very minimal ulcerative colitis! 

Sometimes I have abdominal pain and diarrhea.. But not all the time like most people experience. There's also a bunch of other symptoms but these are the main ones I can remember right now.

i guess what I'm looking for from posting is to hear other people's stories/ see if anyone else has experienced the same things I've experienced. I've seen a cardiologist a neurologist and no one could find out anything wrong. I'm an RN so I'm very sensitive to these symptoms and sometimes I feel like I'm a crazy patient .. But I know what I feel... And it's not fun.

thanks in advance for anyone who replies! :) 

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

Celiac.com Sponsor (A8-M):


mommida Enthusiast
mommida
Posted

I've heard of cases where Lyme triggered gluten sensitivity.  Lyme could have "triggered" Celiac.

A lot of your symptoms are connected to vitamin B 12 deficiency.  Vitamin B12 is water soluble and is not linked to a toxic level danger.  If you take too much you would most likely get "D". 

Are you going to get further testing at your doctor's office?

cyclinglady Grand Master
cyclinglady
Posted

How long have you been gluten free?  You might consider getting tested for celiac disease.  The catch is that you must be consuming gluten for 8 to 12 weeks prior to a blood draw.  

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,165
    • Most Online (within 30 mins)
      7,748
    VGL
    Newest Member
    VGL
    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

    • DAR girl
      Celiac and allergic to common subs and adds in prepared foods

      By DAR girl · Posted

      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      Disregarded

      By Scott Adams · Posted

      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Oldturdle · Posted

      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By plumbago · Posted

      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...