gingerthing

I was diagnosed with Primary Dysautonomia (Idiopathic Orthostatic Hypotension) first, it was a huge battle. I wonder if the Celiac and Dysautonomia are directly connected?

I have been suffering from autonomic dysfunction for 3 months now. 7 weeks of this was spent in hospital extremely unwell and the cause has not been found. They suspect the form I have to be postural orthostatic tachycardia syndrome (POTS). This can be an illness on its own or caused by something (secondary). On the wikpedia website it says that celiac has to be ruled out (amongst several others) before a diagnosis can be made. I was diagnosed with celiac disease in may this year. Whilst I was in hospital a blood test was done but was normal, but because I am B12 deficient, folic acid deficient and have a serum iron count of 8 they done a endoscopy and concluded from biopsies that I have celiac disease. They also found an adrenal mass but said its not functioning so will just scan next year to see if it's grown.

Does anyone have any advice or experience regarding this. I have also read various literature on the internet stating that celiac can manifest as neurological problems. I am new to all this and would appreciate any input. I am following a strict gluten free diet and have been since my dx, I have improved but am unsure whether this is due to the diet or steroids I was put on (i'm taking fludrocortisone - for poss POTS and adrenal probs!!!).

I have not read the biopsy report and am awaiting a copy. My bowels are more or less back to normal now. Some of the symptoms I was experiencing were/are: chest pain, tachycardia, palpatations, t-wave inversion (all cardiac tests were fine, echo, stress echo, treadmill test), sweating, orthostatic intolerence, severe weakness, nausea, diahrrea, hypoglycemic episodes......

Kind Regards

Eve

Looking at both the replies above, my experiences are extremely similar to both of you.....the migraines and abdominal pain was insane. Like I would be having a perfectly wonderful day out doing something fun and just grab on to my stomache with these sharp pains where i could barely stand-up and not vomit at the same time. And I kept being told it was a bunch of stuff it wasn't or treatment didn't work OR worst that it was Anxiety, anxiety on perfect wonderful day out??? Really??? It was getting hard to believe....so glad i found this site!!!

Welcome to the board.
Basically my signature says it all.
I hope you recover soon but it does take time for most of us. Ask any questions you need to and do know you are not alone in a long time of suffering. It will get better though. Ask any questions you need to and feel free to vent if need be.

I really had to respond to this post. YES. I GET SHARP STABBING PAIN LIKE THAT ALL OVER MY ABDOMEN, scarey pain from gluten. Gluten terrifies me ust thinking of ingesting it and going through that pain one more time! I hope that helps!