shathaway0811 Posted January 19, 2016 Report Share Posted January 19, 2016 Hey y'all, I'm just curious as to what general GI symptoms those of you who have POTS or other autonomic dysfunction experience? For as long as I can remember, I've had chronic gastric symptoms and it has always been dismissed as IBS as a result of anxiety. However, I'm at the point where that is not a good enough explanation for me as I have been diagnosed with POTS and over the last few months my GI symptoms have increased significantly and it's getting to the point of me losing weight and it being intolerable, which has not happened before... I have been referred for an endoscopy and colonoscopy as diagnostic tests but am trying to decide whether or not the POTS is worth mentioning to the gastroenterologist - which is why I'm curious what other symptoms people on here have experienced. Mine include: Frequent diarrhea (I NEVER have normal bowel movements)Cramping, sometimes severe, on a regular basisOccasional severe constipationFood coming up completely undigested hours laterEsophageal spasms every time I eat (sometimes when I drink)Difficulty swallowingEarly Satiety (most recent and most bothersome, as it inevitably leads to major stomach discomfort every time I eat) Bloating, sometimes painful to the touchGas (both ends...) Chronic hemorrhoids and pain/discomfortNausea dailyI don't notice a direct correlation with the severity of these symptoms and the severity of my POTS symptoms; these tend to be much more consistent and chronic - the POTS, though uncomfortable, tends to be pretty moderate and has been under control with a low dose beta blocker. If anything, my GI symptoms have gotten worse with that.Thanks y'all. Quote Link to comment Share on other sites More sharing options...
p8d Posted January 20, 2016 Report Share Posted January 20, 2016 I have had similar GI problems (diarrhea, cramps except for GERD, which started with the POTS), literally all my life (colic as a baby). I was diagnosed with lactose intolerance at 14 and have total intolerance to whey. I am not celiac, had an endoscopy last year when hospitalized with severe malnutrition weighing 84 pounds. The stomach pain (GERD?) led to that and 6 weeks of TPN. I have cut out gluten but still struggle with weight. I had weighed 105, now 95. My neurologist just prescribed cyproheptadine for appetite. I don't tolerate magnesium and I know many suggest it as a supplement. My GI issues don't appear to be related to POTS flares but many of the meds to treat it have set off diarrhea (no cramps). I had all the tests, negative. I eat lots of nuts for fats and calories. I joke I'll get diarrhea if you look at me wrong. You are not alone. Quote Link to comment Share on other sites More sharing options...
Faye Posted January 20, 2016 Report Share Posted January 20, 2016 My IBS is pretty bad and presented itself before POTS flare( tho I suspect had POTS since childhood), when I mentioned POTS to my GI dr(before diagnosed) he said it thought it was highly likely it was autonomic and would explain why i had two episodes of diverticulitis before presenting IBS with sever spasms, bloating, colic like a baby, both ends,that would not pass...that would land me in ER....nortriptyline has helped my greatly...still have issues but not in ER all the time...You may consider doing a little research into Sucrase-Isomaltase Deficiency/Congenital Sucrase-Isomaltase Deficiency....tho it is usually found in infant, my daughter was finally diagnosed when she was 16 and her symptoms didn't start presenting till when she was 12..and full blown at 15... They thought she had gluten intolerance or celiac, but tested negative... This was found during a colonoscopy biopsy... Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 20, 2016 Report Share Posted January 20, 2016 I have had severe GERD, severe nausea, projectile vomiting, abdominal cramping, and chronic diarrhea with bowel urgency. Since my MCAS has been treated, most of this has disappeared or greatly improved. I only have breakthrough nausea and diarrhea these days and that always happens in conjunction with a breakthrough rash or hives. So, what I once thought was part of my dysautonomia, was actually my MCAS. The vomiting and the GERD were the first symptoms to improve. We had tried all of the various GI type meds on me and none gave me any relief except Donnatal which would relieve my abdominal cramping for about a day. Then, once I got on an H1 and H2 antihistamine regimen, I started to see improvement. Recently, we tweaked my meds by switching which H1 I am on and adding Singulair. That has improved my bowels a bit more again. Quote Link to comment Share on other sites More sharing options...
tgleiker Posted January 20, 2016 Report Share Posted January 20, 2016 I have had similar symptoms but not all the ones you have listed. When I had a consult for POTS at Stanford they said there is a form of POTS that is connected to all the symptoms you listed. Have you been tested for the autoimmune form? I am on Mestinon and it helps with many of the symptoms associated although they have not been able to confirm that I actually have the autoimmune form. Quote Link to comment Share on other sites More sharing options...
p8d Posted January 21, 2016 Report Share Posted January 21, 2016 Prov31mom,What tests were done to determine autoimmune form?Katie, may I ask what meds you take besides Singular? I have suspected MCAS.Thanks.P Quote Link to comment Share on other sites More sharing options...
shathaway0811 Posted January 21, 2016 Author Report Share Posted January 21, 2016 I have had very little testing done besides positional testing for blood pressure and heartrate. However, after being given a few different informational websites from my doctor to look at for information, I just recently came across MCAS/Mastocytosis and the systemic manifestation of that describes me EXACTLY. It encompasses symptoms I have had since I was a child, and that have recently gotten exponentially worse. I'm hoping I can convince my primary care to refer me to someone who can order the necessary tests for that. Quote Link to comment Share on other sites More sharing options...
shathaway0811 Posted January 21, 2016 Author Report Share Posted January 21, 2016 Katybug, how did you end up getting diagnosed with MCAS? Did you have to self-advocate, and if so, how did you approach it? My physician mother thinks it is a very distinct possibility for me given my lifetime symptoms (which is a major thing for me, considering physician parents like to live in denial haha.) Quote Link to comment Share on other sites More sharing options...
tgleiker Posted January 21, 2016 Report Share Posted January 21, 2016 Hi, I had a series of blood tests sent off to the Mayo Clinic to test for autoimmune- I think it's called the neoplastic array with AAG. Hope that helps. Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 22, 2016 Report Share Posted January 22, 2016 Hi. I'm on Ketotifen (which I have to get from Canada with a prescription ) as my H1. Cimetidine is my H2. And I'm on the Singulair. I figured out I had MCAS and then found an immunologist in my area that had a clue about it to confirm.http://www.wjgnet.com/2218-6204/full/v3/i1/1.htm Quote Link to comment Share on other sites More sharing options...
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