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rgarton

Unusual symptoms, any help appreciated

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Hey guys,

I'm having an awful evening and it's not the first. I've been having unusual symptoms and hoping someone else can either give advice, sympathy or explanation. 

Been dx for 7 years now. Pretty severe, actually so severe they decided against a biopsy (I had to be on a drip, have a blood transfusion etc) so my celiac doesn't seem to run the usual course. It took about 4 years to feel any difference after changing my first and I'm super ocd about it so the likelihood of being contaminated is about 0.1% 

About 3 years ago I started having these random episodes of severe body tremor, like epilepsy without epilepsy. But it rarely happened so I waved it off. 

Now it happens every couple of weeks. For roughly 6/8 hours I'm bed bound by it. Along side my temp goes completely askew, bordering around low grade fever. Severe shaking. Upset stomach, loose stools. Nausea. Flushed cheeks. 

I can't explain how much it affects me. No one can seem to find a reason so far. 

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I think you need to see a doctor.  Not everything is related to Celiac.  

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I have but not had any answers... Been checked for a ton of things but nothing unusual exception of elevated igf-1 levels without Acremogoly or any brain tumor. 

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1 hour ago, rgarton said:

I have but not had any answers... Been checked for a ton of things but nothing unusual exception of elevated igf-1 levels without Acremogoly or any brain tumor. 

Have you had any re- check for Celiac?  Are you anemic or vitamin deficient... something like that?

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Sympathy and explanations......

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199287/

This article explains how certain vitamin deficiencies can cause tremors, shaking, tics, etc.   

Celiac Disease causes malabsorption which results in malnutrition.  

I had vitamin deficiencies.  I had episodes like what you've described with the shaking and fever, etc.  

Have you been checked for nutritional deficiencies?   Many doctors seem to overlook vitamin deficiencies as a source of problems. 

Also found this article that links vitamin D to IGF1...

https://www.ncbi.nlm.nih.gov/pubmed/24005315

Hope this helps!

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Doesn't sound very much like celiac disease if you are sure there is no cross contamination is going on. Also an idea would be to keep track of everything you eat or do leading up to an episode to see if you have any other food sensitivities. 

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I've had all my blood and vitamins/minerals checked. Vitamin D is perfect too. Definitely not anemic. Celiac levels are within normal range. ? I take supplements every day too. 

I got a BP monitor and did some readings through the episode. My BP was very high and it kept showing an irregular heart beat so I think you're right it might not be to do with my celiac at all. 

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