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sandybaltimore

POTS and Celiacs has anyone had this like this?

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Hello,

 

Most of my life I have stomach issues. I have been on a rollercoaster for as long as I remember. In my 20s I almost died from dehydration and still no one discovered what caused the diarrhea and stomach issues. In my late 20's I started getting hives. Until I was 35 I had constant hives. Then that calmed and just kept red blotchy. Now I am in my 40s and the 2 years ago my joints started hurting progressively getting worst and just tired exhaustedly tired. The last Month I almost passed out and once at work. I ended up in the er. They think I have Pots -Postural Orthostatic Tachycardia Syndrome. Every time I would try to eat I would get sick with those symptoms of heart pounding like nuts and feeling like I would pass out. I was so nauseated and sick even the littlest amount of food was bringing it on... so I did not eat. I also had a problem keeping balance on walking like my legs felt like jello. Some days are worst then other and some are not so bad with the balance shaking. 1 week of not eating - just taking a centrum to keep up with water. Then I noticed something. Here I was starving myself-- AND I FELT THE BEST I EVER FELT IN MY LIFE!! My joints felt better! My energy was alright not 100 percent but alright. My aches felt better. My sore body felt better. So I posted on my facebook... I just don't get this how can I be STARVING myself and FEEL the best I felt in my entire life!! Someone said wow with all the things you been through it sounds like you have a problem with Gluten I bet it. So I read up on gluten and and celiacs. So I watched what I tried to eat to be no gluten. I started feeling better and the first week I could eat little. Then I could eat more--- all gluten free. I just email my doctor and he said it sounds like I had good questions for him and to make an apt to figure out what testing we need to do.  I almost want to cry because all these years....all these freaking years!!! I am just crying not because I am said part because I am angry that we could not figure it out sooner and part because finally figuring it out. Dr apt 6.23.16 and I am just overwhelemed that I may get real help finally. I also have a cardiologist apt for the 28th because they are confirming the pots which they already believe it is. I have had a stress test already as well. Has anyone else been through it like this???? I had problems as a kid even ending up at 7 in an ambulance for pain in my stomach.... and they blamed it on a kid who kicked me a week before said I was probably bruised internally. Seriously!!! Ugh I will update but has anyone  had any of this for soooo long with no one knowing what it was?  I pray this is finally it.... because I know keeping off the gluten has  made me feel so much better.. My joints and energy and everything is getting better slowly!!! Do you know what testing will be done? I had 4 colonoscopies trying to figure crap out and why didn't they figure it out with them- other then polyups???

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i know exactly how you feel. I had various things going on from teens till 40 and it was then I had my own eureka moment?

I had pots for years, dizzy on standing, once I stood up and promptly fell into a friends tv ?

Its largely gone since I went gluten free, along with the chest pains, back ache, anxiety, depression, psoriasis, mouth ulcers, weird muscle twinges, palpitations, blood sugar spikes, tremors, eye sight problems, seborrhoea dematitis etc etc...  Oh and I tested negative, so don't let a negative result put you off trialling gluten free.

your doctors will want to take blood tests then probably follow up with endoscopy. You need to be eating gluten right up until they finish testing, no matter how much you want to ditch it!

lots of great info and support available here, welcome! 

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Just a heads up.......cardiac problems like the ones you have experienced are VERY COMMON with Celiac Disease.
 I had an abnormal EKG once when I was still recovering from Celiac but my doc did not send me to a cardiologist because my weight was still very low and having low weight can exacerbate/cause cardiac problems. My cardiac work-up in her office was perfectly normal but the EKG was off.  After gaining more weight and starting to exercise, things returned to normal and I have never had another problem.  With your history, I think you most likely do have Celiac. I understand the dehydration thing very well...been there, done that.  So, be careful with any cardio people because they might diagnose you with something you don't really have. Get Celiac tested and if you are, follow the diet well and your problems will most likely disappear!  I hope you find answers and feel better soon!

BTW....I had the same problem pre-diagnosis in that if I did not eat, I felt good.  Eat food=feel really bad. But when you are already underweight, not eating doesn't work out so well........<_<

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I was diagnosed with a benign arrhythmia about 10 years ago and the cardiologist couldn't figure out what was causing it. My heart checked out as healthy many times, I just had this irregular heartbeat. I've been on Flecainide for it ever since. Now that I have begun to do more research about gluten problems, I wonder if that was the answer all along. I'm beginning the journey to get tested and see if this is the reason for my many strange symptoms over the years -- diarrhea, constipation, gas, GERD, headaches, tingling, depression, and more. From everything I read, it seems there are a lot of doctors who just treat the symptoms of this problem, such as cardiologists, without ever checking to see if there is an underlying issue that explains it all. I think it's smart to check out the celiac angle before totally buying into what a cardiologist tells you.

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Hello. I get symptoms of pots when gluten is in my life. The palpitations are rare but once glutened (since being gluten free) milk can bring on paliptations. Now knowing gluten is bad for me I can recall as a child having mild spinning  like sensations but as a kid I thought it was me spinning,  hanging upside down, and hand stands as a causative feature. And back then it was fun and sporadic. 

In my pre teen years was the time I got the frightening spinning vertigo sensations out of control adrenaline rush that scared me to the point of hyperventilating. I was calmed down at home told it was stress symptoms and just went about life. As I got older some Dr's would say it was anxiety symptoms but nothing that required medication since I managed well and did not appear to fit the criteria. 

By my late 20's I experienced my "fun house" episodes with out the house nor were they fun. Here my sensations were my left and right feet/body were not walking on the same plane . I felt my cochlear hair cells must have been bent damaged but had no explanation why. My best description though. It was attributed to a middle ear infection and if it had not cleared I was to have an MRI at the 4 month Mark. At this point I told my new husband I would honor an annulment for I personally thought I had an autoimmune disorder or the start of one. He stayed.

 By my thirties I had a history of ear infections where even the wax was infected and stuck to my ear drum. Then after having children I experienced a constant unrelenting lightheadedness no vertigo, no dizziness, no fun house sensation. Lightheadedness all day all the time no matter what position I was in it didn't go away. It really was  really frightening and off I went to 4 different Dr' s four different diagnosis none fix the problem permanently. Then in my late 30's more symptoms of edema, and peripheral neuropathy tingling joined my Gi and IC symptom bundles. My husband finally said just stop bread, try it. As stubborn as I can be I did and many of the symptoms that plagued me subsided, quickly. Years of stuff went poof. I went a step further from bread and went gluten free. I am thankful to say that when gluten is not in my life I have none of the pots symptoms I described above.

I hope you get to the bottom of your pots like symptoms. Mine were always explained by something else but I now know the real culprit that was missed all along. So does POTS connect to gluten issues from my opinion and personal experience -absolutely.

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Thank you everyone for the responses. I am super encouraged by the positives of figuring it finally out. Awol - I pray that will happen to me I know a ton of them are gone already!  It is hard to explain to people who are constantly like its in your head or other crap. But you know what is happening in your body. My sister would say oh hives again I guess theres not a time you don't have them.

People see a hive and don't think there is an itch that you can not satisfy. Or that it is making you miserable. That is only visible things. The things people can not see like my joints aching and hurting. My balance literally be off and I can not control my legs right. That I try to hide it from everyone as best I can so I don't get fired. Feel like I am finally getting the answers from NOT BEING HEARD or those not caring. Just very thankful that I am alive to get this done. I think my mom may have had it. Just reading some of the things and then my mom had a lymphoma in her 40s. I am beginning to think she may had it also. Wish she was alive to tell her Mom I think I know where your pain came from. I know why your joints hurt. I know what could contributed to you getting lymphoma. Anyway just a very long journey.

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