Please share your thoughts on GI issues and Dysautonomia

[Pippie]

So I’ve been getting progressively worse since March 2017. 42 yr old female. Prior to this no issues was healthy and working out regularly. 

My symtoms:

heart palps (not always. Comes and goes in patterns. Mostly in mornings.  Always have to lay or sit down when they occur and can last 1-2 hours

lightheadness feels like I’ll pass out, but have not yet. 

Back pain/lower leg pain as if I’ve been on my feet all day. This starts within an hour of being up after sleeping well all night

tired all the time 

I’ve  noticed that when all these symtoms come on, I have to have ice cold water and place ice on my face or neck to keep from feeling faint 

GI issues started beginning of this year with something stuck in throat, feeling of fullness, heart burn. These symptoms went away then lower GI symptoms started. More frequent BMs 2-4 a day. With texture of BM changing on me. 

Tests done: endoscopy, colonoscopy, CT scan of abdomin, sibo breath test, stool tests, lab work to full out neuroendocrine issues, thyroid issues, heart issues, Lyme disease, infections etc. full cardiac work up including echo, dozens EKGs ( due to heart palps), 21 day heart monitor, brain MRI a year ago. 

All tests came out normal. 

Question: do any of you feel your Dysautonomia is related to your gut? I have always felt that when I have to pass gas or go have a BM,  that’s when I get feeling of being faint, light headed and weak.  I’ve tried going dairy free and significantly reduced my intake of beans and gluten but I’m not seeing a difference. 

I have an appointment with an autonomic clinic in December.

 

 

[Echo]

Hi @Pippie, I know exactly the feeling you're describing and I'm as frustrated as you to not have an answer for it. I too have experienced the feeling faint, shaky and a hot flush crawling up through my body that is relieved by passing gas or having a bm. I had this a long time ago as well, before I was diagnosed. I Googled it then and there are many people out there, not just in the dysautonomia community, who feel this but they just get told it's a panic attack. I was very sure that something in my digestive tract was being "triggered" by the gas or the bm and that it was setting off the uncomfortable feelings. 

I'm not so sure now. Because if that was true then any gas or bm passing through would trigger it but for me I can go for eons with bms and gas not doing anything to me and then one day it comes back and then goes away again. What I mean is that if it there was some structural/physical abnormality like a damaged or extra-sensitive nerve, it would be getting hit every, or almost every, time.  I think this because I've had bms of every size and texture you can think of but there isn't one in particular that triggers this feeling. (I used to think that large bms would do this for sure, but actually they didn't.) 

I think now that it's not a bm or gas bubble that causes the feeling but that the feeling is triggered by the nervous system and just happens to end with a bm or gas release if that makes sense? I'm sorry I don't have any answers for you and I'd like some myself!

[Guest KiminOrlando]

When they did the scope did they do a biopsy? They also checked for Crohn's on bloodwork? Celiac and Crohn's are usually quickly ruled out.

I would say your next test would be gastric emptying... eating the glowing eggs. 

[StayAtHomeMom]

I think the GI issues most of us have are related to dysautonomia in general. There is a dysfunction with our autonomic systems. Your GI symptoms sound spot on like mine though. If you ever figure it out let us know. Good luck. 

[voxel]

My gluten intolerance arrived at the same time as my dysautonomia symptoms.

According to my gastro and cardiologist... the small intestine - where celiac's and gluten intolerance occurs - sends electrical signals to other parts of the body and when irritated can cause other issues.

When I stopped eating gluten I experienced far fewer HR issues. My rest HR (from FitBit) went from 79 to 70 within a day. My body was definitely suffering from inflammation.

[StayAtHomeMom]

2 hours ago, voxel said:

My gluten intolerance arrived at the same time as my dysautonomia symptoms.

According to my gastro and cardiologist... the small intestine - where celiac's and gluten intolerance occurs - sends electrical signals to other parts of the body and when irritated can cause other issues.

When I stopped eating gluten I experienced far fewer HR issues. My rest HR (from FitBit) went from 79 to 70 within a day. My body was definitely suffering from inflammation.

Did you actually have an elevated SED to check for inflammation? Or just best guess?

[Pistol]

@Pippie - I also am familiar with your symptoms. When my ANS acts up then I get diarrhea, heartburn, nausea, abdominal pain … it is directly related to the dysautonomia as per my specialist and my gastroenterologist. --- I am curious about some other symptoms you have: you mention low back pain and lower leg pain. Does this occur when your GI issues act up? I see you had a CT scan of the abdomen but have they done a MRI? I get back pain into my legs and diarrhea as well as urinary incontinence at times and my docs ordered MRI to rule out spinal causes. Especially if you feel faint when all these symptoms occur your doc may be willing to order an MRI of the lower spine to rule out herniated disc or other spinal causes. 

[voxel]

10 hours ago, StayAtHomeMom said:

Did you actually have an elevated SED to check for inflammation? Or just best guess?

My ANA and SED were normal (tested after diagnosed with dysautonomia to confirm no other issues) a few weeks after stopping eating gluten. I did not have those tests while suffering. 

Along with the rest HR drop, I noticed my HR while sitting/standing was constant 108 for a full week but dropped to 88 within 24 hours after stopping eating gluten.

[StayAtHomeMom]

3 hours ago, voxel said:

My ANA and SED were normal (tested after diagnosed with dysautonomia to confirm no other issues) a few weeks after stopping eating gluten. I did not have those tests while suffering. 

Along with the rest HR drop, I noticed my HR while sitting/standing was constant 108 for a full week but dropped to 88 within 24 hours after stopping eating gluten.

That is interesting. I did find out some medications have gluten in them so if you are serious about being 100% gluten free make sure you check with your pharmacist as well. Always thought it was weird that gluten could be in medications. 

[Pistol]

@voxel - do you think ALL of your symptoms were caused by gluten intolerance? That would be wonderful news! - I know that POTS causes GI distress but what if GI distress causes POTS? And if you get better after changing your diet? --- I myself am not gluten intolerant ( tested and confirmed ) but it may help some other dysautonomia patients. 

[voxel]

5 hours ago, Pistol said:

@voxel - do you think ALL of your symptoms were caused by gluten intolerance? That would be wonderful news! - I know that POTS causes GI distress but what if GI distress causes POTS? And if you get better after changing your diet? --- I myself am not gluten intolerant ( tested and confirmed ) but it may help some other dysautonomia patients. 

No. The first two weeks where I first began experiencing sinus tachycardia were caused by gluten interolance...  Any blood pressure or HR spike now is caused by dysautonomia or pheochromocytoma (still waiting for the results) and far less frequent. I used to have HR spikes 3-4 times/day when eating gluten and now they are every two or three days without gluten.

My POTS-like symptoms (standing up -> HR spikes) have lessened since my leg vein pain has toned down in intensity.  I can tolerate a BP 136/89 without sinus tachycardia... unfortunately there have been days where my BP spirals up to 156/98 or higher.