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Pot Syndrome (postural Orthostatic Tachycardia Syndrome)
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Hi, I have type 1 diabetes, celiac, hypothyrodism, and now this POT syndrome and for you guys who dont know what that is it is "dysregulation of the autonomic nervous system. The autonomic nervous system is the master regulator of organ function throughout the body. It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions. Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates. For this reason, dysautonomia patients often present with numerous, seemingly unrelated maladies."(Potsplace.com) Anyways I was wondering if anyone has this? I hate it! I have terrible joint pain, extreme fatigue, headaches, dizziness, racing heart, stomach aches (im not eating gluten),itchy eyes, soar throat all the time, I am always sick and my body definitely does not recover as fast as my family and friends. The fatigue is so bad that I had to cut my school schedule in half and I am currently on medical leave at my work. I have increased my fluid and my salt intake and I have started walking every other day, but it isnt seeming to help. Any advice out there anyone can give me?

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I've had Neurocardiogenic Syncope my whole life. My blood pressure just drops to nothing for no apparent reason. I've had recurrent fainting spells and two seizures because of it. When I was sixteen I went to the family doctor - old guy - with this, explaining that I've been fainting for as long as I can remember, he said,"Young girls faint. It's normal." I didn't have the heart to explain to him that young girls no longer wore corsets. :rolleyes:

I've found no help in doctors and I've stopped trying. I stay hydrated and I eat lots of salty foods. (My BP is low.) If I feel an episode coming on I plant myself on the ground and stay there till it passes.

Sorry I can't be more helpful. :( I'm old and bitter and eating salty gluten-free pretzels. :P:lol:

Here's some sites but I bet you've found them already!

NDRF.org

American Autonomic Society

Vanderbilt Autonomic Dysfunction Center

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Thanks! I have low BP too so I do eat alot of salty foods to and it helps a little but not enough.

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Have you tried any of the Rx drugs for it? I tried a beta blocker (I can't remember the name) but it left me feeling like a wet dish rag. I gave up on it pretty quick. That was years ago though, they've got to have better meds out by now . . .? :o

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Hi, I have type 1 diabetes, celiac, hypothyrodism, and now this POT syndrome and for you guys who dont know what that is it is "dysregulation of the autonomic nervous system. The autonomic nervous system is the master regulator of organ function throughout the body. It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions. Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates. For this reason, dysautonomia patients often present with numerous, seemingly unrelated maladies."(Potsplace.com) Anyways I was wondering if anyone has this? I hate it! I have terrible joint pain, extreme fatigue, headaches, dizziness, racing heart, stomach aches (im not eating gluten),itchy eyes, soar throat all the time, I am always sick and my body definitely does not recover as fast as my family and friends. The fatigue is so bad that I had to cut my school schedule in half and I am currently on medical leave at my work. I have increased my fluid and my salt intake and I have started walking every other day, but it isnt seeming to help. Any advice out there anyone can give me?

POTS is very much associated with Lyme disease and one of its coinfections, babesia. I would advise you to get Lyme testing through Igenex labs in CA. MDL is another OK lab for Lyme testing, as is Bowen. DUMP the rest...they are JUNK!

Your symptoms scream Lyme to me....but I'm certainly not a dr!! Please PM me if you'd like more info.

Wild Condor's Links and information:

http://www.wildcondor.com/lymelinks.html

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Your illness sounds like another one of those that are due to a definite cause (or several causes), and the doctors just have to give it a name, but really are clueless. With another doctor you could just as easily have been diagnosed with fibromyalgia, because the symptoms are pretty much the same.

I used to have all the same symptoms as you, but was diagnosed with fibro instead. Now I know that the joint pain (and pain all over), sore throat, itchy and tearing eyes, headaches (migraines), stomach aches were caused by food intolerances, and the extreme fatigue and heart palpitations appear to be due to adrenal burnout (caused by undiagnosed food intolerances, including celiac disease, as poisoning your body for 52 years WILL cause huge stress, which can lead to adrenal burnout).

I have fairly low blood pressure, too, and very low body temperatures. So, I might also have a thyroid problem, and I am bringing it up with my naturopathic doctor when I see him on Wednesday.

Your symptoms could be caused by other intolerances (follow the links in my signature if you want to find out more). But Lyme disease is also a definite possibility and needs to be investigated. Find yourself a good alternative doctor, your regular GP will probably just tell you that you don't know what you're talking about.

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POTS is very much associated with Lyme disease and one of its coinfections, babesia. I would advise you to get Lyme testing through Igenex labs in CA. MDL is another OK lab for Lyme testing, as is Bowen. DUMP the rest...they are JUNK!

Your symptoms scream Lyme to me....but I'm certainly not a dr!! Please PM me if you'd like more info.

Wild Condor's Links and information:

http://www.wildcondor.com/lymelinks.html

Mmmhhhmm...I went to that website, sounds like me. Im going to mention it to my doctor and see what he thinks. Thanks!

Your illness sounds like another one of those that are due to a definite cause (or several causes), and the doctors just have to give it a name, but really are clueless. With another doctor you could just as easily have been diagnosed with fibromyalgia, because the symptoms are pretty much the same.

I used to have all the same symptoms as you, but was diagnosed with fibro instead. Now I know that the joint pain (and pain all over), sore throat, itchy and tearing eyes, headaches (migraines), stomach aches were caused by food intolerances, and the extreme fatigue and heart palpitations appear to be due to adrenal burnout (caused by undiagnosed food intolerances, including celiac disease, as poisoning your body for 52 years WILL cause huge stress, which can lead to adrenal burnout).

I have fairly low blood pressure, too, and very low body temperatures. So, I might also have a thyroid problem, and I am bringing it up with my naturopathic doctor when I see him on Wednesday.

Your symptoms could be caused by other intolerances (follow the links in my signature if you want to find out more). But Lyme disease is also a definite possibility and needs to be investigated. Find yourself a good alternative doctor, your regular GP will probably just tell you that you don't know what you're talking about.

I was told by one doctor that it was Fibro, but he didnt explain it well. I dont know how to treat it. Anyways my doctor who said I had this POT syndrome recomended me to this RN at Mayo Clinic who specializes in POTS and she said that because its a syndrome that Fibro and Chronic Fatigue syndrome fall under the category of POTS. The RN told me how to treat POTS ,but it isnt helping and my gut tells me that I dont have this POT thing. I have really been thinking of other food intolerances lately especially becuase I've been getting really bad stomach aches after I eat, so Im going to check that out more. Thanks!

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I have POTS and was diagnosed by Dr. grubb, the POTS specialist in Ohio. He said there is a definite link between the autoimmune disorders effecting the gut (celiac) and POTS. I got POTS shortly after being diagnsed with gluten intolerance. Feel free to email me if you want to talk more about it.

Hi, I have type 1 diabetes, celiac, hypothyrodism, and now this POT syndrome and for you guys who dont know what that is it is "dysregulation of the autonomic nervous system. The autonomic nervous system is the master regulator of organ function throughout the body. It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions. Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates. For this reason, dysautonomia patients often present with numerous, seemingly unrelated maladies."(Potsplace.com) Anyways I was wondering if anyone has this? I hate it! I have terrible joint pain, extreme fatigue, headaches, dizziness, racing heart, stomach aches (im not eating gluten),itchy eyes, soar throat all the time, I am always sick and my body definitely does not recover as fast as my family and friends. The fatigue is so bad that I had to cut my school schedule in half and I am currently on medical leave at my work. I have increased my fluid and my salt intake and I have started walking every other day, but it isnt seeming to help. Any advice out there anyone can give me?
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I have POTS and was diagnosed by Dr. grubb, the POTS specialist in Ohio. He said there is a definite link between the autoimmune disorders effecting the gut (celiac) and POTS. I got POTS shortly after being diagnsed with gluten intolerance. Feel free to email me if you want to talk more about it.

I know this is an old thread, but I wanted to say that I was diagnosed in February with Autonomic Dysautonomia. I found this thread when looking for link between Celiac and Dysautonomia. My biopsies were negative of celiac disease, but I had high IgG levels. I started a gluten free diet anyway and had no Dysautonomia symptoms for a week after that! The symptoms did come back, but seem to be better when I eat gluten free.

How has your Dysautonomia been since being gluten free? Have you seen any improvement?

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Hi, I have type 1 diabetes, celiac, hypothyrodism, and now this POT syndrome and for you guys who dont know what that is it is "dysregulation of the autonomic nervous system. The autonomic nervous system is the master regulator of organ function throughout the body. It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions. Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates. For this reason, dysautonomia patients often present with numerous, seemingly unrelated maladies."(Potsplace.com) Anyways I was wondering if anyone has this? I hate it! I have terrible joint pain, extreme fatigue, headaches, dizziness, racing heart, stomach aches (im not eating gluten),itchy eyes, soar throat all the time, I am always sick and my body definitely does not recover as fast as my family and friends. The fatigue is so bad that I had to cut my school schedule in half and I am currently on medical leave at my work. I have increased my fluid and my salt intake and I have started walking every other day, but it isnt seeming to help. Any advice out there anyone can give me?

When were you diagnosed with celiac disease and how long have you been 100% gluten free for? (no cheating) ?? I ask because I had these EXACT same symptoms, was diagnosed with POTS and hypothyroidism, and the doctors could not figure out why. I did my own research and founud out that, although rare, celiac has been shown to cause these symptoms. I got tested for celiac and it came back positive. Now, after 2 months of being 100% gluten free (not even a crumb) my symptoms are GONE!!!!!!! I am sure that it will depend on how long you have had celiac, to see a difference from your diet, but hang in there-- You just might start feeling amazingly better pretty soon!!!! There absolutely IS a connection, ..the doctors are just too ignorant to realize it.

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I should add to my last reply that...if any doctor out there is reading this... jump on the wagon and make yourself famous by exposing this "secret". Too many people are needlessly suffering from something PREVENTABLE!!!!

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When were you diagnosed with celiac disease and how long have you been 100% gluten free for? (no cheating) ?? I ask because I had these EXACT same symptoms, was diagnosed with POTS and hypothyroidism, and the doctors could not figure out why. I did my own research and found out that, although rare, celiac has been shown to cause these symptoms. I got tested for celiac and it came back positive. Now, after 2 months of being 100% gluten free (not even a crumb) my symptoms are GONE!!!!!!! I am sure that it will depend on how long you have had celiac, to see a difference from your diet, but hang in there-- You just might start feeling amazingly better pretty soon!!!! There absolutely IS a connection, ..the doctors are just too ignorant to realize it.

Wow, that's interesting. In 2002 I developed orthostatic hypotension (blood pressure dropped out when I stood up) and POTS (the racing heartrate when standing). I felt like I was going to pass out and puke at the same time. The doctors never figured it out, but acupuncture helped a LOT. It took about a year to start feeling better and be able to just get off the couch and walk to the bathroom without feeling really crappy (seriously).

I had no symptoms of gluten intolerance back then, but developed severe reaction to gluten (fatigue, constipation, sinusitis, etc.) around March or April of 2008. I went gluten free last October after figuring out what was causing my symptoms, then found out a few months later that I had to be eating gluten to be tested for celiac. Since I'm not about to purposely feel like total crap for months and months, I guess if I do have celiac, it will remain undiagnosed.

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Can you tell me more about the Dr. Grubb you speak of Des1713? I am intersted in corresponding with anyone regarding celiac and POTS on behalf of my mother.

Thanks! suzannespisani@gmail.com

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I have had autonomic dysfunction for five years now. I was also diagnosed with celiac five years ago. Two and a half years ago, a cardiologist -- knowing that I have had was was diagnosed as "autonomic heart dysfunction" by her -- decided to perform a tilt-table test. My neurologist attempted to contact her numerous times to coordinate information, but his calls were declined.

After having a fairly normal test, while I was in "almost standing" (15 degrees shy of upright), I was given nitroglycerine. To put it mildly, all He** broke loose. My blood pressure - which is now low anyway (usually 90/54), went down to 50/14. My heart rate went up to 186. The nurse called for the crash team, and the amytryptilline (think "Pulp Fiction") injectable was open and ready to go. I sustained minimal consciousness during this and remember at one point when the nurse asked me if I was still with her, I whispered, "Barely." I was fortunate that everything started resuming toward normal prior to the initiation of these interventions.

All of that being said, I have to say that I agree with LymeToo. I was MIS-diagnosed for six years with Lyme, Babesia, Bartonella and Erlichia. These are all tick-borne diseases that I incurred through ONE BITE when I was hiking in the White Mountains in New Hampshire.

Please don't get me wrong -- the type of celiac I have has wreaked havoc with my cerebellum. It destroys once protein on ONE CELL (the Perkinje cell) of the cerebellum. This particular protein so strongly mimics gliadin that when you have elevated antigliadin antibodies, it begins attacking your body, as well. The interruption of transmission because of that is tremendous. It IS a type of celiac, and it IS an autoimmune disease. It is also what caused my autonomic dysfunction, as the cerebellum - as the "Grand Central Station" of your body - regulates that, as well.

The MD who correctly diagnosed me said that the "watershed" of autoimmune diseases I developed -- including celiac -- is one of the common manifestations of Lyme.

I realize that this is NOT a Lyme forum, not a topic for such. I just know that the "root cause" of my sero-conversion to true autoimmune celiac disease is this.

Best of luck to you with this. I know -- too well -- what an awful condition it is to live with.

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Your symptoms sound EXACTLY like my daughter that has P.O.T.S. She has extreme fatigue (can sleep for 16+ hours straight and wake up tired), heart racing, stomach issues, low B.P, dizzy, lightheaded and nearly fainting, foggy, and always cold. If she gets a simple cold she is like a noodle on the couch and can't recover quickly. It is all typical in P.O.T.S.

She has had many highs and lows over the past two years and during the cold winter months she is exhausted. We almost home-schooled her last year. This year the school is working with us and she has special permission to sleep in when it is needed and they are working around her illness.

At times, she is happy, bubbly and normal. But if she over-does it with her friends, she pays the price over the next few days with extreme fatigue and all of the other symptoms.

Hang in there. There are many others out there just like you!

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Hey guys and gals,

I have been suffering from suspected food intolerances for 6 months now with chronic severe brain fog, lightheadedness, dizzy spells, depression, and dysautonomia (chronic orthostatic intolerance). I've gone on an elimination diet and that means no gluten or casein (among other things). I've been on the diet for 5 days now and feel much worse since starting. In the first couple days I maybe felt a little tiny bit better but now I feel like hell. I'm not sure if this is some kind of gluten/casein withdrawal or what but I am at the end of my rope. I don't know how much more of this I can take. Maybe 5 days isn't long enough to see progress but I lose hope very easily. I just want to get better.

Any support/information is greatly appreciated.

Thanks :(

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    • Hi Pablito, Welcome to the forum! You are right, you should keep eating gluten  until the tests are all done.  The skin problems you describe ma be a condition only celiacs get.  The condition is called dermatitis herpetiformis (DH for short),  DH causes an itchy rash that is usually symetrical on the body.  You get the rash on both arms or legs etc.  It makes little blisters on the skin.  They are caused by IgA antibodies in the skin.  There i a test for DH where they take a small skin sample (biopsy) from the skin next to a blister and check it for IgA antibodies.   If they find DH, then you have celiac disease.  The 2 conditions are never separate.  there is a section of this forum dedicated to dermatitis herpetiformis with lots more information. The usual diagnostic process is to do a celiac antibodies blood test first, and then an endoscopy to test for damage to the gut lining.  But with DH, it is better to get the skin biopsy done instead of the endoscopy. Celiac disease is passed on in genes, so your children should be tested also if you are diagnosed.
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