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BmariedRN

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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! :) 


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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.  

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    • Scott Adams
      The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
    • trents
      Tammy, in the food industry, "gluten free" doesn't mean the same thing as "no gluten". As Scott explained, the FDA (Food and Drug Administration) allows food companies to use the "gluten-free" label as long as the product does not contain more than 20 ppm (parts per million) of gluten. This number is based on studies the FDA did years ago to determine the reaction threshold for those with celiac disease. And the 20 ppm figure works for the majority of celiacs. There are those who are more sensitive, however, who still react to that amount. There is another, stricter standard known as "Certified Gluten Free" which was developed by a third party organization known as GFCO which requires not more than 10 ppm of gluten. So, when you see "GFCO" or "Certified Gluten Free" labels on food items you know they are manufactured with a stricter standard concerning gluten content. Having said all that, even though you may read the disclaimer on a food item that says the spices may contain wheat, barley or rye (the gluten grains), you should be able to trust that the amount of gluten the spices may contain is so small it allows the total product to meet the requirements of gluten free or certified gluten free labeling. I hope this helps.
    • Tammy Pedler
      As soon as I see gluten free I read the labels. I always find stuff that I cannot have on the products them selfs. Like spices, when the labels says  everything listed and then after like say garlic salt then the next thing is spices. When it says that that can contain wheat and other things I can’t have.. 
    • Scott Adams
      While hypoglycemia isn't a direct, classic symptom of celiac disease, it's something that some individuals with well-managed celiac disease report, and there may be a few plausible explanations for why the two could be connected. The most common theory involves continued damage to the gut lining or nutrient deficiencies (like chromium or magnesium) that can impair the body's ability to regulate blood sugar effectively, even after gluten is removed. Another possibility is delayed stomach emptying (gastroparesis) or issues with the hormones that manage blood sugar release, like glucagon. Since your doctors are puzzled, it may be worth discussing these specific mechanisms with a gastroenterologist or endocrinologist. You are certainly not alone in experiencing this puzzling complication, and it highlights how celiac disease can have long-term metabolic effects beyond the digestive tract.
    • trents
      Paracetamol, aka, acetaminophen (Tylenol) just does not do anything for me as far as pain relief. It does help with fevers, though.
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