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POTS side dish


calypso
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I am wondering if anyone here has any experience with any of the following: horrible gas that is pretty much constant (started a few months ago); intermittent nausea; slight occasional pain in the upper right side of my abdomen and in my back, above my kidney; and occasional soft stools that are light in color.

I know, very descriptive. But I have never had a GI issue EVER, and I don't know what I am dealing with. I had an elevated bilirubin level a month back and am now wondering about gallstones. I read on a reputable medical info page that gallstones can result from rapid weight loss and metabolism problems, both of which I am experiencing. Or maybe these GI issues are causing the weight loss. I don't know if it's the chicken or the egg. My doctor can't believe I am having problems with this many body systems -- this all started with shortness of breath (lungs), then heart stuff (tachy), then weakness and coordination issues (neurology), then rapid weight loss and hair falling out (lupus, they thought, but so far it's not that), and now this. I am embarrassed to ask for another referral, but I feel as though something's not right. As if anything seems right at this point!!

Any ideas?

Amy

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Guest tearose

Hi Amy, yes, I had this problem and it would come and go and all my tests were within normal limits for a looong time. I had problems digesting food, I had pains in my abdomen and back,I had gas so bad I really did worry my family! The short version of my experience is: after loosing so much weight that my shoes felt loose, and relapsing so bad that I was eating soft mashed food, my doctor sent me to a bad gastro doctor. The gastro doc insisted that I put solid food back in my diet and that maybe I had some "food issues" or I was stressed and needed paxil...I was so mad! I said, I would begin to eat solids and give it a two week trial. That night I ate solids, by 2am I was vomiting, on the floor in pain and by 7am I was back at my internist. At 9am I was admitted to the hospital with fever and an IV drip for pain and fluids. They did a test something like a HIDA scan which finally showed my problem. I had delayed emptying and my understanding is that my gallbladder, although it worked, it was so slow that food would begin to ferment in my stomach before it could be properly processed. I had no stones. I had some sludge. I was a mess. In retrospect, it was the crappy doctor who insisted I eat solids that made it all come to a head and get resolved. My surgeon said my gallbladder was so dark and diseased that I must have been sick for years!!! He said he had to be really careful removing it because it had stuck to my liver!!! I still get pissed off to remember that gastro doc and his careless comments. Anyway, please pursue all tests so you don't have a similar experience to mine. Trust your instincts! feel better, tearose

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Amy, get an abdominal ultrasound done to focus on your gallbladder, but more importantly your liver. Were any of your other liver enzymes elevated? It is hard to say without some other testing what it is. Is your upper right quadrant(right under your ribcage) tender when you touch it? Does it get worse when you eat or does it matter?

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Amy,

I have all of those symptoms, except for weight loss and the pain in the back (I do get the pain in the abdomen). But I had bad gas and minor acid reflux from time to time before I got POTS. I just chalk my current symptoms up to my prior problems, plus the fact that I am now taking florinef which is not great for my stomach. I think it definitely makes sense for you to see a good GI doc.

-Rita

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Amy,

I am not sure if you've ever been tested for celiac, but a lot of what you're describing is common symptoms for celiac. Untreated celiac can lead to weight loss, malnutrition, hair loss etc. AND it can cause the GI and gall bladder problems as well.

In addition to an ultrasound, x-ray and liver enzyme testing, I would ask for the gliadin antibodies test (it's a simple blood test for celiac).

Hope you find answers soon. Keep us posted!

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My liver enzymes were all normal. I have not been tested for celiac disease, but I have wondered about it since so many here have it. Can it show up suddenly, though? I thought it was something that caused symptoms in children and teens, not adults.

Amy

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Yes, celiac can show up suddenly. I wasn't dx'd with it until I was 32. I never had any noticeable symptoms except for the last 6 mos before I was dx'd (which got really bad in a very short amount of time). However I had subclinical signs, iron anemia, for many years prior, which is often a good indicator of celiac or GI problem like Chron's if other causes for the anemia are ruled out.

My father has celiac too. He was not dx'd until he was in his late thirties.

Symptoms can present themselves when your child or later in your adult life. It's something worth checking into anyway.

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I get terrible gas if I eat stuff that has wheat, rye, barley or any of their derivatives. I have celiac sprue according to my gastro. You should really follow up with your doctor, and if you don't have a gastorenterologist, you might want to consider seeing one. He/she can help you figure out what's going on.

Nina

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Hey Amy,

I don't know about celiac, but just wondering if you'd tried cutting down on foods that cause gas? They are listed in this article from WebMd:

http://my.webmd.com/content/article/90/100648.htm

There are also meds like beano and Gas-X which have helped me in the past, assuming they are OK to take with any meds you are already taking.

If your problem is serious, these ideas may not work, but just thought I'd throw them out there.

-Rita

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I have to add just one thing. I had my gallbladder out 6-22-97, but still am symptomatic. It is not as often and not so bad as before but I still do have "those days".

Ps I have also gone reduced glutten (as in 2 items with gluten per day, and yes that would be 2 slices of bread) and it has helped alot with my bowels.

Blackwolf

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I don't have pain with celiac--just bloating and gas. The pain I have is due to my slow motility and everything getting all bound up in my intenstines. I look like I'm pregnant after a few days of "not going".

also, this is kind of gross, but one diagnostic symptom of celiac is that bm's float (a fun parlor trick :P ...just kidding). Seriously, the digestion process is screwed up with celiac and for whatever reason (I think it's fat content), they float.

Nina

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amy,

it is really weird you posted today b/c i was just thinking...where is calypso? i hope she is okay? and almost posted a topic to that effect! and then, i log on and voila, there was a post from you!

anyway, i really think from your discussions in the past it would be worth it to once and for all rule celiac in or out...it can come on in the way you desribe from what i understand and cause the symptoms you are describing.

load up on gluten! :rolleyes:

i am so sick of docs being so dismissive! i still haven't figured out the root of my probs either and don't know if i should chalk them up to POTS either.

another thing to try on your own, which may or may not help...is an elimination diet to rule out if foods are aggravating your symptoms.

if i 'cheat' on my diet, esp with gluten or dairy...yup, the gas is bad! it takes a while to see results with an elimination diet, but it was more than 100% worth it for me.

i always believe that we, especially as young women, who are so often dismissed by doctors, should keep pursuing things until we feel that we are being treated with respect and dignity. it took me 6 years to find a POTS doc. i was accused of doctor hopping and the usual stuff we have all been through, but i know i was right in the end, and we must follow that! from all of your weight loss and stuff, i don't think you should dismiss this!

so, that's my story, and i'm stickin' to it!

off to bed.

keep us posted.

emily

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Emily,

How nice of you to think of me. I was in Ohio visiting family for about a week so hadn't had computer access. Travels went OK, except the usual attitudes at home from my relatives about my health -- they all seem to think POTS is an emotional disorder and that I am just having health problems as a result of these emotions. I know they just don't really understand and are naive to think I could have this many physical problems from a mental source. I don't sweat it anymore, though.

I also agree that humor is essential, even when you are in the depths of despair. My dad managed to tell jokes and kept his sense of humor up to the morning he died.

Amy

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