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

Help!


BmariedRN

Recommended Posts

BmariedRN Newbie

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

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

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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

    2. - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

    3. - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

    4. - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

    5. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,879
    • Most Online (within 30 mins)
      7,748

    Peta Dunn
    Newest Member
    Peta Dunn
    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

    • cristiana
      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
×
×
  • 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.