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New member with interesting symptoms


Emdoller

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Emdoller Newbie

A few years ago I was given a long and high dose of antibiotics. A few months later, my BP, PSA, spiked and a had leg twitches and leg pains. A cardiologist  checked me out and asked me to stop eating gluten. After a few months of that and taking magnesium, my symptoms disappeared. Last summer I started eating gluten again, and all symptoms reappeared. Right now I’m popping 800mg of magnesium daily, have gone gluten free and feel better although I do have some minor neuropathy in my one shin.
 

Given everything I’ve read no celiac and non-celiac gluten intolerance, it seems my symptoms are different. 
 

Anyone else experience something similar?

Thanks in advance. 


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trents Grand Master
(edited)

Welcome to the forum, Emdoller!

Neuropathy is a common symptom of both celiac disease and NCGS (Non Celiac Gluten Sensitivity). Though they share a number of common symptoms, there is no test for NCGS. Celiac disease must first be ruled out. Celiac disease is diagnosed in two stages. The first is a blood test looking for antibodies produced by celiac disease. The second is an endoscopy with biopsy to check for the damage celiac disease causes to the villi that line the small bowel. When this damage is severe, it causes vitamin and mineral deficiencies which can lead to a variety of health issues, including neuropathy. Unfortunately, testing must be done while having still been eating regular amounts of gluten. When you go off gluten, healing of the villi starts to happen and the tests will be invalidated.

It is also unfortunate that your cardiologist suggest you quit eating gluten before you were tested. Now, you will need to live with the uncertainty of whether you have celiac disease or NCGS. But the antidote is the same: complete avoidance of gluten for life.

Edited by trents
Emdoller Newbie

Thank you!! 

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    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      This article, and the comments below it, may be helpful:    
    • Scott Adams
      That’s a really tough situation. A few key points: as mentioned, a gluten challenge does require daily gluten for several weeks to make blood tests meaningful, but negative tests after limited exposure aren’t reliable. Dermatitis herpetiformis can also be tricky to diagnose unless the biopsy is taken from normal-looking skin next to a lesion. Some people with celiac or DH don’t react every time they’re exposed, so lack of symptoms doesn’t rule it out. Given your history and family cancer risk, this is something I’d strongly discuss with a celiac-experienced gastroenterologist or dermatologist before attempting a challenge on your own, so risks and benefits are clearly weighed.
    • Greymo
      https://celiac.org/glutenexposuremarkers/    yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
    • trents
      Concerning the EMA positive result, the EMA was the original blood test developed to detect celiac disease and has largely been replaced by the tTG-IGA which has a similar reliability confidence but is much less expensive to run. Yes, a positive EMA is very strong evidence of celiac disease but not foolproof. In the UK, a tTG-IGA score that is 10x normal or greater will often result in foregoing the endoscopy/biopsy. Weaker positives on the tTG-IGA still trigger the endoscopy/biopsy. That protocol is being considered in the US but is not yet in place.
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