POTS

[Feeneyja]

I'm wondering how many folks had POTS symptoms during their gluten consumption/challenge?  

My gluten challenge brought it on and now 3 weeks gluten free after the challenge and still dizzy I upped my salt and water intake and it has made a HUGE difference in the spike in my standing heart rate.  Now, when I feel dizzy, I glance at my Fitbit and notice my heart rate is elevated, but not nearly as high as during the challenge. 

I think I have had POTS symptoms for a long time, fainting twice and nearly fainting many other times. Back then, I tended to attribute it to low blood pressure and blood sugar. But it was always times of prolonged standing, worse in the morning.  It went away when we went gluten free several years ago, and I thought it was related to lower carb intake stabilizing my low blood sugar. 

I have read that POTS is more common in those with gluten intolerance . Anyone here who had symptoms develop while on gluten?  

[ccrew99]

I got diagnosed with POTS back in November. I had already been gluten free for about a year and half prior the POTS diagnosis.  It was POTS that made me so sick for about 3 years and went undiagnosed until this November. I also had adrenal problems so it is my speculation that I had undiagnosed Celiac for so long that it damaged my adrenal glands which led to the POTS. But to answer your question I did not just get POTS while the gluten challenge. At the time I was so sick I didn't even know I had Celiac yet. So I think it can happen anytime.

[Feeneyja]

Thanks ccrew. I'm trying to figure this out. I think I had some POTS symptoms for a while, but nothing like during the gluten challenge and now it's like something new has emerged. I'm definitely better off of gluten, but I'm still seeing heart rate spikes that result in eyesight issues and dizziness.  Water and salt seem to help quite a bit.  I need to get back to exercising.

Today I stood perfectly still for 10 minutes and watched my heart rate go from 62 up to 99 and at that point I started sweating and my vision started to cloud so I sat down.  I tried it again later next to my husband. His heart rate went from 54 up to 70 and then back down to about 62 in 2 minutes. My heart rate was 95 and climbing.  During my gluten challenge it went up to 130+. No wonder I felt terrible.  It just seems like such an odd thing that the gluten challenge seemed to have triggered this. Maybe the stress? I just don't understand enough about POTS or what my reaction to gluten was to make sense of this. 

[ccrew99]

That definitely sounds like POTS. Same symptoms for me as well.  I just happened to get lucky finally and was sent to a POTS dr here in Dallas. From what I have read they are hard to find . It took many Drs and misdiagnosis after misdiagnosis sadly. Salt definitely helps.  Interesting though a lot of POTS symptoms and adrenal symptoms are alike, so it's hard to determine if one is causing the other.   I really think you should have your adrenal glands checked as well. I have researched  over the last few years trying to figure out what happened to me and I have read numerous things about co morbidity illnesses with celiac such as adrenal problems and POTS and several other issues. I'm not ? on what actually happened to me but what I believed happened was having Celiac untreated for 30 something years started damaging my adrenals and POTS symptoms came from that. Anyway there is a lot of digging you need to do but yes it sounds like you're experiencing the same stuff I did and the common denominator for both of us is Celiac. Oh! Be super super careful with exercising right now if you truly feel it's POTS, it can make things a lot worse. My POTS doc gave me strict regimen to follow so I would advise you to research it before you do anything. If I even mildly did too much I would be bed ridden for 2 days. I will try to send you some links and my dr info ?

[ccrew99]

Open Original Shared Link

this is a forum I used to navigate POTS and it has some really helpful info and lists of POTS Drs 

[Jmg]

13 hours ago, Feeneyja said:

 I have read that POTS is more common in those with gluten intolerance . Anyone here who had symptoms develop while on gluten?  

Yes I had it when on gluten. It's largely resolved now, very occasionally I'll get a slight recurrence. I never know whether to put that down to a cross contamination glutening or something else, but its not happened enough to force me to go through the hassle of seeing a doctor about it...

[Feeneyja]

Thanks ccrew. I don't technically have celiac disease. I was very sick from my gluten challenge but did not test positive.   I'm trying to decide if it's worth going to a cardiologist about this since lifestyle change is the first treatment.  My GP said it could be vertigo and/or POTS. Not exactly a diagnosis.  I'm supposed to just keep on keeping on and hopefully my nervous system will go back to normal. 

Jmg, I remember you mentioning it before. So its basically better?  Did you do anything in particular about it?  I was wondering if your experience at the eye doctor recently was related. 

My resting pulse is pretty low (52-62), so it doesn't take much to feel bad.  I think I'm going to get a blood pressure cuff. I'm curious what my blood pressure is doing during this time. 

[Jmg]

51 minutes ago, Feeneyja said:

mg, I remember you mentioning it before. So its basically better?  Did you do anything in particular about it?  I was wondering if your experience at the eye doctor recently was related. 

Ye...es... ! I don't have a complete answer. I do have the occasional reminder of it, but its nothing like what it was before. My blood pressure is ok. I've had high bp in past but that was when I was all over the show. I went through many years very messed up without properly understanding what was happening to me. So now since I'm gluten free I've had to discover a new normal and I'm not always sure whether I'm completely ok or just so much better than I was that it feels that way.

The eye experience the other day was the first time I've been back to the doctor in a long time. Not because I'm fully ok but because my last experience there was so bad that I've all but given up on them.  I went because I don't want to go blind, otherwise I think I'd have stayed away. They were next to useless anyway but at least it spurred me into getting an eye test with a competent professional, who also doesn't have a good word to say about the practice in question....

Sorry, am ranting now!  I probably need a lie down. then I can test my pots as well

 

 

 

[ccrew99]

I think if the gluten challenge started these symptoms it's a safe bet to say you definitely need to stay away from it regardless if testing negative. I have the dermatitis herpetiformis part of celiac( if they are still saying it's related) so I never had a lot of stomach symptoms like the rest and have been told it's hard to get a positive test result. With all that said I don't care about test results if you know how gluten makes you feel, so just stay off of it if it makes you feel bad ? 

My POTS still hasn't fully resolved yet and I've been off gluten for about 2 years now so I'm really not sure if they are connected. I just know I have both. The dr I see is a POTS specialist and has explained to me that POTS isn't its own illness but is caused by something. I did a month long of testing and he could never identify where mine was actually coming from. So needless to say I was never really able to treat it. I just learned what my triggers were and stayed away from them . That link I posted has good info in it and discusses the main culprits of POTS . You may need to research that link and you may be able to identify with one of the causes. 

[ccrew99]

But yes POTS can make you feel terrible!!! It's not just when you change positions, it's that your brain isn't sending the right signals to your heart(nervous system) at the right time so you aren't getting adequate blood supply to various parts of your body. If you are nauseated and have a hard time eating your stomach may not be getting the blood it needs and that is called gastro paresis which is very common in POTS. That's part of what made me so sick. He determined I had it severely by having meat under an x-ray scanner for 4 hours. So it doesn't just affect your blood pressure and heart rate!!!! But the increased heart rate on standing is a great sign they look for when diagnosing POTS. Every part of my body has been severely impacted by POTS and I know many many people aren't getting this diagnosed. I'm so so sorry for you having to go through this but hang in there!!!!! It took 3 trips to the ER and countless Drs and no one had a clue. I felt like they were just sending me home to die ? I go to the HeartBeat clinic in Dallas but I know that link I posted has a list of POTS docs as well.

[Awol cast iron stomach]

I am not diagnosed POTS. I believe I have a body that can be subclinical test wise and that fights hard to maintain homeostasis which has its positives but not so much in western medicine. I am enigma test wise and then get diagnosed with one of the top 10 misdiagnosed/celiac diagnosis. I think  I'm 8 out of 10. I haven't pushed tor POTS testing as I couldn't finish my gluten  challenge and  knew I couldn't. If I go POTS route I suspect it will be the same.  I will suffer more from the testing rather than  dealing with it as I always have. I don't want that switch flipped fully and the full brunt of it crashing down on me , when I'm maintaining a mild form I've dealt with for decades. Make sense?

I know I have CNS issues and I have some of the symptoms of POTS. If it's not POTS my CNS has been attacked likely by my immune system or it turns on when I'm highly inflamed. It affects my organ systems and can flare. It ramps up I adjust as needed best I can until I get it downgraded/tolerable/remission(?). Most notably my symptoms are heart rate, pounding rush, ache in upper back shoulders, flushing, lightheadedness(unrelenting), tremors,kidneys excessive urination.

My earliest symptoms were in middle school. I ran to tell my mom something scary was happening, fell down the stairs, and my body was overloaded by everything my  cardiovascular system& sensory wise. That was the worst and strongest event. I often during that time had symptoms of low blood sugar/ tremors and when  I felt light headed she reminded me to eat.I do not faint but often feel on the brink of fainting.

Over time it became just me and while irritating as heck, less scary. It however never gets less annoying. I can't tell you how often throughout my lifetime I walked around like this. In my late 20's I stopped driving for several months it got that bad. I felt like I was walking in a fun house for months sensory wise. I went to have it checked out, I suspected autoimmune issue was looming.  I passed the basic Neuro and was told it was a middle ear infection. My next step was an MRI for  MS, I'll admit it I prayed really prayed for it to go away. It did 2 days before my test I was so grateful and will admit I didn't want to pursue more testing. I however suspected autoimmunity was in my future. I have had gi issues a lifetime. In my early 30s I ran the gamet of primary care,allergist/immunologist and was told it was psychological. Now I know what I'm dealing with and I've had celiac and multiple food intolerance s  likely from toddlerhood or birth.

My heart rate fluctuates and  I feel it, I even have used a blood pressure cuff at home. Years back I came home ill from work one day and I laid down and cuff on and my bp was bouncing up and down but not a huge fluctuation that many  have. The company moved us into the same building as production and my symptoms flared badly. Previously the office was in separate building. I left that job and once out of that it improved. 

My biggest annoying lifetime POTS symptoms is an unrelenting lightheadedness it's maddening. I also have flushed for a lifetime which is quite embarrassing. I get symptoms even g.f. but have realized corn and other chemical intolerance s can trigger it. In addition to cc, I suspect airborne gluten, corn, some chemicals I am sensitive to and lastly vibrations from a deep subwoofer base frequency also appear to trigger my cns . I live in an urban area and people love their base and  I feel it cars away. I am 9 months out from my gluten challenge, and accupuncture is  helping me to tame the POTS like symptoms. I've had these symptoms a long time and they flare and remit. For me it's time and keeping my body happy from the triggers it hates. It difficult to avoid all my suspect triggers, but if the accupuncture can tame the inflammation, heal the gi, and regulate the CNS, I know I can get a few good  long years stretch again. No matter what it's called I am stuck with it.

Good luck to you. Your not alone.

Ps I often become a recluse like  hermit during my symptomatic times to aid my cns.  I'm often criticized by unknowing people etc but they don't live in my body. Overall calm and peace is golden.