Neurally Mediated Hypotension- Will It Improve With Gluten-Free Diet?

[MitziG]

Hi, I am new here and new to learning about Celiac Disease. My 7 yr old son was recently diagnosed via biopsy. My 12 year old daughter and I both tested positive on the blood test and are awaiting a biopsy to confirm next week, but am pretty sure that it will be positive as well as we have both had a lifetime of stomach issues and horrible canker sores-along with a myriad of other complaints! I am 36. Last year or so I have had terrible fatigue as well, was found to be anemic and am taking iron, which resolved the anemia but I am still just dead tired all the time. Actually will be relieved if this is the source and maybe I can start to feel better! Anyway,my research has made me aware that autonomic disorders are frequently linked to Celiac. I have suffered with what I believe to be Neurally Mediated Hypotension for years. I have never been diagnosed because when I DID try to explain to my doctor that I cant stand for more than a few minutes without getting dizzy, nauseous and almost passing out, he looked at me like I was a hypochondriac. I just dropped it. I did some research on my own and learned drinking more water and eating more salt can help, and it does seem to help a little bit. But, I have to do alot of standing at work, (I am a Chiropractic Assistant) and lately, the problem seems to have worsened. Last Saturday I almost threw up and passed out on a patient after doing therapy on her for 8 minutes! She saw me going down and helped me to a chair before I hit the floor, but clearly, this is not acceptable. Anyway, I have been debating or finding another doctor, getting an ACTUAL diagnosis and maybe some meds to help with this, since the salt water isn't doing the trick any longer. But, my question is, if I AM positive for Celiac, and I am gluten- free, will this go away, or at least improve? I haven't been able to find an answer to that anywhere! If it will likely get better, I won't bother going through the hassle of searching out a good doctor and paying for the tilt table test and all that jazz to diagnose what I already know that I have! Besides, I don't even know what kind of doctor I would need to see- cardiologist? And I have so many medical bills already-from a lifetime of feeling like crap. So tired of having doctors tell me I am just depressed that I WOULD like some vindication! I am sure the rest of you who have endured years of being misdiagnosed can relate to that! So...anyone here have some resolution of their dysautonomia when they went gluten free? or do I really need to consider meds? So sorry for the looong post, and thank you in advance for your help!!

[ravenwoodglass]

In my case celiac was defiantely linked to my orthostatic hypotension along with low blood pressure and something called ataxia.

I was told for years that it was normal for me to have blood pressure readings like 90/60 or so and that all I could do was stand up slowly. After years of that my balance became very bad and toward the end I needed either canes or walls to be able to walk. Within six months gluten-free I was able to walk unaided and my blood pressure was within normal limits.

Can't say for sure if it will improve for you but there is a good chance it will.

[MitziG]

In my case celiac was defiantely linked to my orthostatic hypotension along with low blood pressure and something called ataxia.

I was told for years that it was normal for me to have blood pressure readings like 90/60 or so and that all I could do was stand up slowly. After years of that my balance became very bad and toward the end I needed either canes or walls to be able to walk. Within six months gluten-free I was able to walk unaided and my blood pressure was within normal limits.

Can't say for sure if it will improve for you but there is a good chance it will.

Thank you Ravenwood- You don't know how happy it makes me to hear that! I have always had low blood pressure and would get very light headed and lose my vision when I stood- but it wasn't really a big deal- always was fine after a minute or so and I just made a point to stand up slower! But this not being able to REMAIN standing is a real pain in the tukus- and very uncomfortable! I am thinking of trying compression hose in the meantime to see if it helps. I am so hoping for a positive biopsy and I can start putting my life back together. I wish I could give up gluten NOW!

[ravenwoodglass]

Thank you Ravenwood- You don't know how happy it makes me to hear that! I have always had low blood pressure and would get very light headed and lose my vision when I stood- but it wasn't really a big deal- always was fine after a minute or so and I just made a point to stand up slower! But this not being able to REMAIN standing is a real pain in the tukus- and very uncomfortable! I am thinking of trying compression hose in the meantime to see if it helps. I am so hoping for a positive biopsy and I can start putting my life back together. I wish I could give up gluten NOW!

I hope it helps you also. After you have the biopsy taken go ahead and start the diet you don't need to wait for the results if all other celiac related testing is done already. There can be false negatives with both blood and biopsy so no matter what the results it is advised to do a trial of the diet. It can take a bit of time to heal, especially when it is the nervous system that is impacted so be patient. Some sublingual B12 might help speed the healing a bit.