Does Anyone Else Have Gi Issues?

[margiebee]

Before I got my POTS diagnosis, I was also diagnosed with IBS. To me at least that basically meant "your bowels act up and we really have no idea why". I get awful cramping pain from it. I was tested for celiac and also had a colonoscopy, but everything was pretty normal except for some slight inflammation. My doctor said it wasn't autoimmune and more likely just random GI irritation. I did seem to identify some "trigger foods", and those include caffeine, tomato sauce, citrus (lemonade was a big one), some fruits such as strawberries and apples, soy products, as well as soda. I am able to drink soda made with cane sugar so we basically came to the conclusion that it was the high fructose corn syrup causing the issue there.

Basically I was just wondering if anyone here has similar problems and/or similar "trigger" foods, and if anyone has found any connection with their POTS-y symptoms. I do have episodes of pain even without eating the bad foods sometimes still, but I have not found any other cause for that, or any solution.

[Christy_D]

^{Most of my sons issues are GI related. We were never able to find the trigger foods. He used to have severe abdominal cramping/pain, but that has subsided for the most part. His main complaint is nausea, but he is also severely constipated. He, too, has had a lot of GI tests, 2 endoscopies, capsule enoscopy, upper GI, colonoscopy, ultrasound, antroduodenal manometry, and two gastric emptying tests. He had gastropareisis, but the second test 1.5 years later was negative. He may still have it though. We have been told his GI issues are autonomic dysfunction related.}

[azmusiclover]

Lots of GI issues here. Was diagnosed with IBS in college. It resolved for awhile, and then after I had my kids, I started having problems again and then my gall bladder quit and ever since that, I have lived on zofran and deal with pain and cramping and tummy issues almost daily. I bloat after eating, gas, you name it. I have a lot of trigger foods. I can't eat salad anymore at all, tomato irritates, rice is horrible, can't do much that's fatty or high in fiber or fat. I'd rather just not eat at this point. For about 6 months last year my diet was pretty much chicken noodle soup or broth and saltines. I have to scale back to that every week or so when I push too much with food.

I've been scoped both ways, irritation/gastritis and I have had the gastric emptying test done. It showed severe gastroparesis. I think that's because the test was done in the AM, but that's my theory.

GI issues are pretty common. Sorry you are struggling with them

[margiebee]

I have quite a bit of trouble with fiber so I have wondered about gastroparesis but I suppose I'd probably know if i had that. I have had doctors explain to me that it could very well be dysautonomia-related, but haven't gotten much more explaination than that.

My appetite has actually been pretty great in the past month or so, so I've been able to gain back a lot of the weight I lost from when it was really bad plus some extra, which is great because I was much too thin. It is just so annoying because the meds for IBS they gave me make me faint so I have to stick with things like pepto bismol and peppermint to settle my stomach in emergencies.

[Zap]

Yes, I have all sorts of digestive issues. When things went downhill and the migraines came back out of nowhere, I was convinced there was a digestive connection causing it, as my digestive symptoms got worse and worse. Eventually I made the connection and asked about dysautonomia, since I had all sorts of bizarre symptoms (including the awful sweating bouts). I was sent off for testing, and that confirmed the diagnosis, and it was decided that the digestive issues were probably linked all along to the overall autonomic dysfunction.

I'm actually having a bit of a flare again, so this is a rather timely post. I have used digestive enzymes, Iberogast, as well as other things to help cope with the problems.

I suppose it is worth noting that my digestive symptoms magically subsided for the most part during my short term courses of steroids that were used to break migraine cycles. Which definitely provides ammo that there is an autoimmune connection, at least in my case, which is the underlying cause of so much of my suffering.

[Joann]

I have digestive issues when I am having a flare of POTS symptoms. This past week I had a flare, and with it I had nausea, couldn't eat anything without acid reflux and getting sick, plus horrible burping and gas (tmi, sorry). It all seems to be related. When I begin to feel better, I am able to eat more, my appetite comes back,, the nausea and gas and burping go away. When I began to feel better I ate more and gained my weight back and I was able to add some because I have always been to thin, also. I figured it would help pad me for the next flare.

I do have some foods that do trigger some digestive issues that I avoid - caffeine (except for chocolate), greasy food (bacon and sausage are no-nos), carbonated beverages and I have been avoiding lunch meats and foods with nitrates, also heavily salted food because I have high bp surges.

[westernmass]

I have GI issues. Originally dx with IBS by a naturopath, but the GE says no it's "more complicated" because I'm not really constipated and don't really have diarrhea and having a BM doesn't resolve much! Lol! I was having a HORRIBLE time this fall/winter. Extreme bloating and related pain, nausea after eating anything, not complete BMs. Just had an endoscopy (showed gastritis but that's it). Negative for celiac. Had a food allergy test, was positive for a ton of things, cut them all out and didn't feel better. Did ID some triggers (alliums, dairy, refined wheats).

I have eaten clean for a long time. Tried Gfree, tried vegan. Tried digestive enzymes, probiotics, dicyclomine, sucralfate. Some things maybe helped a little bit but nothing really helps. I seem to be having a slight improvement at the moment (maybe 25-30%) but not sure if these symptoms will just wax and wane.

All started about 6months into POTS. ANS does control digestive system. Who knows am curious to read others' experiences. Curiously I haven't really lost much weight, which is something I'm trying todo since I gained 15 lbs since POTS. You'd think working out + less food = weight loss but GE said its common because body slows metabolism when it's not all working right.

[E Soskis]

Oh my gosh! The GI issues are truly annoying - I do have autoimmune dysautonomia and the GI part has really been flaring in the past few weeks. The trigger foods are....all food! The only thing I can eat without swelling up like a blow-fish is yogurt, jello, or pudding. Solid foods have been causing much discomfort, swelling, and pain. I get some relief during the day because I wear abdominal compression garment (spanx and the like) but, as soon as I take them off in the evening, I begin to swell. It takes hours for my stomach to empty and mostly backs-up in my esophagus. Yuck! I have a range of clothing from small to XXlarge - told my co-workers I'm just going to start wearing tents because I can swell without constriction! I gain and lose 10-15 pounds every couple of weeks - flip flopping weight gain/loss. When I am in severe pain, I take reglan but, it causes a bad anxiety reaction if I take more than a tiny dose and if I take it more than once or twice a day so...does not help a whole lot. I've talked with 3 MD's about this but, they don't have anything much to say except "it's your disease"....so frustrating.....will see the MD yet again in a couple of weeks....hopefully he can offer me something that will enhance gastric emptying......I do feel very sorry for anyone with GI involvement - you all have my utmost sympathy and empathy!

[margiebee]

Zap, I am wondering what tests you had to actually "confirm" dysautonomia? I was basically told POTS, probably dysautonomia.

Also I am wondering what confirms autoimmune dysautonomia. My ANA levels are totally normal so does that rule that out? The only reason I wonder about that is that my mother has had bouts of Erythema Nodosum which I know is autoimmune. Ahhh so confusing!

[trice125]

Yes! Actually I only had GI issues for six years before all of my other symptoms started appearing. I have gastroparesis, reflux, severe abdominal pain, chronic constipation, etc.

[Katybug]

GI issues my whole life. Was dx'ed with IBS but I knew there was more to it. Finally, dx'ed with abdominal migraine when I was put on Depakote for my migraine headaches and it also took away my GI issues (which included GERD, nausea, vomiting, severe ab pain, diarrhea). I also have trigger foods: cilantro/corriander, bananas, grapes, pineapple.

[Darlene]

have you thought about mast cell activation syndrome

[margiebee]

northerndarlene, I actually have thought about mast cell, I do not get flushing or anything like that but I have gotten eczema-like rashes for my whole life and I have a lot of trouble with allergies.

It seems a lot of people had GI symptom onset prior to other dysautonomia symptoms? I have had these issues since I was a young child, back then my doctor called it "spastic colon" then when it flared up again later in life they called it IBS

[Graphophiliac]

Hello from a newbie!

I've had GI problems my whole life. I thought it was normal to wake up with gas, bloating, nausea, heartburn (GERD?), and/or diarrhea every day, until my family members told me differently. Thus followed the lactose-free diet, the gluten-free diet, the mycotoxin-free diet, multiple tests (all negative), and a couple of "oscopies," which indicated that I was normal. I went through three regimens of antibiotics for SIBO and they made me feel worse. I was finally diagnosed with IBS, which to me has exactly the same definition as Margiebee stated: "Your stomach has problems and we don't know what other category to put you in." I honestly think my GI doctor wanted a better answer, but he didn't know what else to say.

Since that diagnosis, I've discovered a lot of other symptoms that I think point me toward dysautonomia (joint pain, facial flushing, dizziness, itching, unpredictable weird symptoms, etc.), which makes me want to check into mast cell issues, but my main symptoms are still GI related. When you tell people you have stomach problems, they only see that you look okay. They don't realize how debilitating it can be and how much it affects you physically, mentally, emotionally, and spiritually. I can clearly remember one Thanksgiving that I spent in the fetal position in a corner. I can also remember another day when I went for a walk and came back after a quarter of an hour because my stomach was so painful I couldn't stand up.

Trigger foods? That's a mystery. When plain water makes you sick or bloat up, it's hard to believe you'll ever find out your triggers. Or you can eat a cup of something one day and be fine, and eat a teaspoon of the same thing another day and be on the couch in agony. Go figure.

Some things that help me: eating smaller, more frequent meals; sleeping on a wedge pillow; avoiding spicy or fermented foods; avoiding too much fiber; drinking enough (but nothing too cold or too hot, since temperature extremes cause problems); long moderate exercise like walking or jogging...

I'm looking for more answers, but it sure takes a long time. I'm sorry that so many of you have such awful GI issues, but I'm also really glad to find a community with others who understand, because a lot of people don't seem to realize that GI problems are so intrusive in every day life. Hang in there, everyone!

[Zap]

Zap, I am wondering what tests you had to actually "confirm" dysautonomia? I was basically told POTS, probably dysautonomia.

Also I am wondering what confirms autoimmune dysautonomia. My ANA levels are totally normal so does that rule that out? The only reason I wonder about that is that my mother has had bouts of Erythema Nodosum which I know is autoimmune. Ahhh so confusing!

I had a Tilt Table Test, Valsalva, QSART, and Thermoregulatory Sweat Test. I had officially abnormal results in the QSART and TST. The TTT did show a rise of 30 bpm but for whatever reason that wasn't used to Dx POTS. So at the time I was given the diagnoses of Dysautonomia and Patchy Postganglionic Sudomotor Neuropathy.

Autoimmune is hard to confirm - I had the Mayo autonomic test panel run, but none of those tests came back positive. The research (not to mention the female/male ratio) suggest strongly that many are autoimmune origin, but the specific marker hasn't yet been found. So, in short, some end up languishing without treatment since there isn't a specific confirmed autoantibody to be used as a definite diagnosis tool.

I had a lot of autoimmune tests run, too, but they all pretty much came back normal. That said, I'm not sure the testing was exhaustive.

[margiebee]

Ahhh I see, that is definitely interesting. My doctor has more tests planned for me but so far they are all cardiology related (hemodynamics, etc). I only see a cardiologist right now so I am not sure if he even really deals with the dysautonomia aspect at all. Hopefully the treatments he has in mind will help with the GI issues and not just the POTS. I know that when I was taking my full dosage of a benzo, which helped with my POTS, it also helped significantly with my stomach issues. After doing some more research, I feel like the fact that the benzo med helped my symptoms so much might suggest hyperadrenergic POTS, but I am not sure if that excludes autoimmune causes.

Whatever is the cause of mine it seems to be genetic as my brother has similar symptoms, including similar GI issues.

[Kate2011]

Yes, my whole life. In fact it's my GI history that's making my doctor's think the Dysautonomia has been since birth. I have tons of trigger foods, for me it's actually easier to list the foods I can eat safely, but I won't go into that now. We're worried I may have Gastroparesis so I'm on Reglan (which has helped), and I already have severe stomach pain, GERD, IBS, and what seems to be cyclical vomiting. Good luck and remember you're not alone!