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BmariedRN

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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! :) 

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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.  

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    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

      Okay, it does make sense to continue the gluten challenge as long as you are already in the middle of it. But what will change if you rule it out? I mean, you have concluded that whatever label you want to give the condition, many of your symptoms improved when you went gluten free. Am I correct in that? According to how I understand your posting, the only symptom that hasn't responded to gluten free eating is the bone demineralization. Did I misunderstand? And if you do test positive, what will you do different than you are doing now? You have already been doing for years the main thing you should be doing and that is eating gluten free. Concerning how long you should stay on the gluten challenge, how many weeks are you into it already?
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      I mean that I will be re-taking the celiac blood test again while I am currently on the gluten challenge right now, but not sure how many weeks more to keep going, to ensure a false negative does not happen. Thank you.
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Thank you for your help, I am currently in the middle of the gluten challenge. A bit over 6 weeks in. At 4 weeks I got the celiac blood tests and that is when they were negative. So to rule out the false negative, since I’m in the middle of the gluten challenge right now and will never do this again, I wanted to continue consuming gluten to the point to make sure the blood tests are not a false negative - which I did not receive a firm answer for how many weeks total.    My issue is, with these blood tests the doctors say “you are not celiac” and rule it out completely as a potential cause of my issues, when the symptoms scream of it. I want to rule out this 30 year mystery for my own health since I’m in the middle of it right now. Thank you!
    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

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    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

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