At war with my stomach

It also may be worth having your gallbladder looked at.  Gallbladder problems run in my family going back many generations and everyone in my family started out with similar symtoms to what you've described, appearing in childhood and going into adulthood.  Eventually, they developed stones and/or sludge and further symptoms that indicated the gallbladder needed to be removed, but they spent years and years in a limbo state much like yours before the doctors could pinpoint what needed to be done.

Good luck--I hope you find some answers soon!

It also may be worth having your gallbladder looked at.  Gallbladder problems run in my family going back many generations and everyone in my family started out with similar symtoms to what you've described, appearing in childhood and going into adulthood.  Eventually, they developed stones and/or sludge and further symptoms that indicated the gallbladder needed to be removed, but they spent years and years in a limbo state much like yours before the doctors could pinpoint what needed to be done.

Good luck--I hope you find some answers soon!

That's a good one to bring up! It was one of the first things I had checked. My grandmother had a double gallbladder, so that raised a few flags and I was sent for an ultrasound to make sure everything there looked okay. I think the woman performing the ultrasound was almost a little disappointed there wasn't a double gallbladder - she got slightly excited when I mentioned the family history and said she had never seen a double gallbladder before. Everything looked normal in the scan, but it's something I have to remember to tell my GP just in case they need to do some further tests in that area.

That's a good one to bring up! It was one of the first things I had checked. My grandmother had a double gallbladder, so that raised a few flags and I was sent for an ultrasound to make sure everything there looked okay. I think the woman performing the ultrasound was almost a little disappointed there wasn't a double gallbladder - she got slightly excited when I mentioned the family history and said she had never seen a double gallbladder before. Everything looked normal in the scan, but it's something I have to remember to tell my GP just in case they need to do some further tests in that area.

Definitely read up what you can online about it!  It can really just wreak havoc on your stomach for years and years before you actually see more of the typical symptoms like gallstones on scans, nausea, sudden pain in chest/back, etc. but the digestion issues you have now could be a precursor to all of this.  I am fairly certain I am destined to have mine removed at some point (great-grandmother, grandmother, aunt, uncle, mom, and several cousins have all had theirs removed) and I find I have to be careful with my diet, especially when I travel.  The main problem with a gallbladder that doesn't function properly is not being able to digest foods that are very rich or high in fat--so I tend to avoid a lot of dairy, anything greasy or fried, red meat, and desserts.  I grew up in the South, so my problems were MUCH worse when I was younger and eating homecooked greasy Southern food. Since moving away, I have radically altered my diet and it has made a huge difference.  Sudden weight loss or gain can also cause problems and even things you don't normally thing about such as carbonated drinks or eating larger meals close to bedtime.  Another thing that can set it off is stress and anxiety, which as you pointed out, is caused by your fear of these problems coming on while you are out.  I know it's easier said than done, but see what you can do to address your anxiety and fear, cos that could definitely be aggravating the problem.  

Another thing that can set it off is stress and anxiety, which as you pointed out, is caused by your fear of these problems coming on while you are out.  I know it's easier said than done, but see what you can do to address your anxiety and fear, cos that could definitely be aggravating the problem.  

My GP put my name on a list for some type of anxiety counselling at the hospital. That was a few months ago and I'm still waiting for them to contact me. As I'm going back to the doctor next week, I'm going to push for a few more tests and see if she can do something about getting me in to see someone about my stress/anxiety sooner rather than later. 

So you are seeing a GP now but they have not referred you to a Gastro specialist? I think if I were you I'd really push for that. Much as I love GPs, they can't know everything and given your symptoms and the simple fact you appear to not have been tested for celiac fully, I'd be all over them for a referral. Do you have any of your medical records from the US? I'd almost think in your case it might be better to start fresh (as I've said before). What meds are you taking now? Did your GP put you on them or is it a carry over from the US?

So you are seeing a GP now but they have not referred you to a Gastro specialist? I think if I were you I'd really push for that. Much as I love GPs, they can't know everything and given your symptoms and the simple fact you appear to not have been tested for celiac fully, I'd be all over them for a referral. Do you have any of your medical records from the US? I'd almost think in your case it might be better to start fresh (as I've said before). What meds are you taking now? Did your GP put you on them or is it a carry over from the US?

It's currently just a GP, but I'm going next week with the intention of getting a gastro referral, amongst other things. I don't have any of my medical records from the US. I had contemplated getting them, but you're right in saying it might be best for a fresh start with the testing. The only thing I would want them for is to have a list of all the medications I've tried that didn't work (I felt like a guinea pig for my gastro in the US). I can't remember all of them as I was only on some for a few days before they made me worse, so knowing which ones to avoid might be of some use.

I'm currently taking Buscopan throughout the day and try to take a Colpermin pill (a peppermint supplement) prior to every meal - the latter being something my GP wanted to test. I had been taking Hyoscyamine in the US, and Buscopan was the closest my GP could find to it here. I also have some Fybrogel (yum...  ) for when things get backed up, but that doesn't happen too often.

It's currently just a GP, but I'm going next week with the intention of getting a gastro referral, amongst other things. I don't have any of my medical records from the US. I had contemplated getting them, but you're right in saying it might be best for a fresh start with the testing. The only thing I would want them for is to have a list of all the medications I've tried that didn't work (I felt like a guinea pig for my gastro in the US). I can't remember all of them as I was only on some for a few days before they made me worse, so knowing which ones to avoid might be of some use.

I'm currently taking Buscopan throughout the day and try to take a Colpermin pill (a peppermint supplement) prior to every meal - the latter being something my GP wanted to test. I had been taking Hyoscyamine in the US, and Buscopan was the closest my GP could find to it here. I also have some Fybrogel (yum...  ) for when things get backed up, but that doesn't happen too often.

Right, so Buscopan is for IBS which you might not even have. As for the other meds, yes, it might be helpful to know what they were. However, do bear in mind that some of these meds can make you worse before you get better. My son was on one for IBD where the side effects were the exact same as what he was being treated for! It can take a month or more to stabilize and go away. Unfortunately, it's the nature of the beast and it sucks.

My son is now on a different med which hasn't stabilized yet but we're hanging tough. He's not in pain so that helps. However, if he doesn't gain weight, they have others they will want to try - including steriods which we're really hoping to avoid.

Another thing you need to get tested for is deficiencies. Given your diet and stress over eating, you're likely missing out on a lot of stuff. Take a multi vitamin if you can if nothing else.

Another thing you need to get tested for is deficiencies. Given your diet and stress over eating, you're likely missing out on a lot of stuff. Take a multi vitamin if you can if nothing else.

I second this.

If you're having gastro issues, nutrition can be a real problem and you might not even know it unless you get tested.

Right, so Buscopan is for IBS which you might not even have. As for the other meds, yes, it might be helpful to know what they were. However, do bear in mind that some of these meds can make you worse before you get better. My son was on one for IBD where the side effects were the exact same as what he was being treated for! It can take a month or more to stabilize and go away. Unfortunately, it's the nature of the beast and it sucks.

My son is now on a different med which hasn't stabilized yet but we're hanging tough. He's not in pain so that helps. However, if he doesn't gain weight, they have others they will want to try - including steriods which we're really hoping to avoid.

Another thing you need to get tested for is deficiencies. Given your diet and stress over eating, you're likely missing out on a lot of stuff. Take a multi vitamin if you can if nothing else.

Most of the pills I've tried have given me side effects that simply make it impossible to function. Since my gastro was trying muscle relaxants for a while, I ended up on pills that made me so drowsy I passed out mid-coversation with my BF, lol. Not all the medications have been quite so bad, and I always tried to keep with them and simply discuss the side effects with my gastro, who would then decide to try something else.

The vitamins are a go. My BF is constantly worried about my nutrition (as am I), so multivitamins are included in my morning pill cocktail.

Awww, so sorry to hear about your problems, elle. It sounds like a nightmare.   My friend's stepson has a rare condition in which he has to eat a highly specialized diet, which contains no protein of any kind, or something like that. I swear, I think he just eats avocados and vegetable soups mostly, and can't have any grains or meat or dairy or sugar or anything like that.   They discovered it when he was an infant, though, because he nearly died from his allergies and if he eats anything with protein he would probably end up in the hospital as his body can't digest it. I think he gets special shakes made for him as supplements and has to take a lot of medications. Oddly enough, he is very healthy and doesn't seem to mind the diet as he is so used to it. I don't have any advice to offer, but just wanted to say that there are some extreme conditions out there in which a special diet is needed, and maybe if they continue to run some tests they will discover what is causing the problem and you can learn to cope with it in order to have a more normal life. In the meantime, are there any support group for people who struggle with Crohns and other gastro stuff who maybe also feel stress and anxiety from their conditions? Perhaps you could find an online forum, even, just to speak to others who are facing the same sort of problems? This sounds so miserable for you, and seems to be affecting every aspect of your life. I think you should really stress to your GP how much this illness is affecting your life and wellbeing and let them know that you really need some help here. And in the future, I think it would be a good idea, if you can, to talk to your workplace and let them know what is happening. I had to tell my boss and several other people in my office about my breast infection, and while it was embarrassing to discuss at first, everyone was sympathetic and I was given as much time as I needed to cope with it. Everyone knows what IBS is, so maybe just tell them you have a severe case of that (until you find out what is really going on) if you start missing a lot of work again. Good luck, and I really hope you feel better soon. (((HUGS)))

This sounds so miserable for you, and seems to be affecting every aspect of your life. I think you should really stress to your GP how much this illness is affecting your life and wellbeing and let them know that you really need some help here. And in the future, I think it would be a good idea, if you can, to talk to your workplace and let them know what is happening. I had to tell my boss and several other people in my office about my breast infection, and while it was embarrassing to discuss at first, everyone was sympathetic and I was given as much time as I needed to cope with it. Everyone knows what IBS is, so maybe just tell them you have a severe case of that (until you find out what is really going on) if you start missing a lot of work again. Good luck, and I really hope you feel better soon. (((HUGS)))

Thanks, Jewlz. And I'm sorry to hear about your friend's son having that condition, but at least he seems okay!

The GP will be hearing my sob story (probably complete with a good bit of crying for a full effect) next week.

I've been really fortunate in the past with employment and was close enough to my bosses who understood and cared about what was going on, particularly when I was changing medications almost every other week. Unfortunately, with this museum position, there was no consistency of who was in charge, let alone who I could talk to about anything. I had been working there somewhat regularly since December and none of the managers knew my name despite me talking to them before each of my shifts. It just wasn't a good environment and all of the regular employees were pretty unhappy being stuck there, too, along with none of us really knowing each other. I know that once I get back into regular office work it'll be different and I'll feel more comfortable approaching my boss if there is an issue.

Thanks, Jewlz. And I'm sorry to hear about your friend's son having that condition, but at least he seems okay!

Yes, he leads a very normal life, in spite of having such a limited diet and is at a healthy weight for his size. I just told you that story to point out that even if it's something extreme and you can only eat a few certain foods, you could still have a normal life. Hang in there, and hopefully they will find out what is causing you these problems.

That's good that you have been able to open up about your condition to your previous employers. Hopefully you could find a job closer to home and with some understanding people who will realize that it isn't your fault. ((HUGS))

Hi everyone. It's been a while since I posted on this topic, but I wanted to come back with some good news. 

After being given several other pills to see if they did anything to help my symptoms, I convinced my GP that what I really needed to see was a dietician. So back in October 2012 I had my first appointment, in which she recommended a limitation diet called the FODMAP diet. It's a diet that gets rid of all foods that create fermentable sugars in the gut, which includes many different things. I went on it for six weeks and all stomach symptoms were gone, and have since started reintroducing foods back into my diet to test intolerances.

What I have worked out is that I am 100% lactose intolerant and that while I am not gluten intolerant, I can only handle it at certain levels. I've kept my gluten intake low since October and haven't had any problems (because gluten was the main FODMAP I was overdosing). That's six months without stomach ailment - the longest I can remember in my entire life. I do have to be pretty mindful of what I eat throughout the day to ensure my overall FODMAP intake is low, but my health has dramatically improved.

So I just wanted to post this in case anyone else is having stomach problems, or if any of you start hearing about the FODMAP diet and wonder if it works. I would recommend talking to your GP or a dietician before doing anything drastic like going on this, because it does require guidance, but I do think it is worth looking into for those of you with digestive ailments. I was able to do all of this through the NHS, but I do not know how many dieticians are trained with this diet as my understanding is it has only been developed from recent research.

Here's some info on this from King's College for anyone interested, although you can find lots with a quick google search: http://www.kcl.ac.uk/medicine/research/divisions/dns/projects/fodmaps/index.aspx

Hooray for your relief! I can't begin to imagine what you must have gone through all these years. To know you can control symptoms must make you feel like life is finally sunny all the time. Thanks for the update.

So glad you've been able to get a handle on this Elle!  It must be such a relief!