Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Doctors Who Have No Clue
0

39 posts in this topic

Soooo, in the last couple of weeks I've been having a lot more pain issues -- which none of my doctors seem to be able to address.

Saw my usual gastro (let's call her gastro #1) and she still thinks functional abdominal pain. Won't even listen to me wondering if it could be another food intolerance since I had pain but not the usual symptoms of being glutened. Wants me on TCAs...which requires a visit to a psychitrist.

Psychiatrist tells me it is all due to stress. Only stress. Nothing else. And wants me to take Lexapro (not TCAs.) Not super keen on drugs that mess with brain chemistry...before my Celiac diagnosis they put me on an anti-anxiety med that was hell to discontinue. I had to taper and still had all sorts of issues (brain zaps, tremors, insomnia, dizziness, etc.) I pointed out to him that I had stress because I was in pain and perhaps if we could ramp the pain down a bit I wouldn't be so stressed. He didn't even acknowledge that statement. Grrrrr.

Had a couple really rough days and ended up back at the doc but gastro #1 is at a conference so I get to see her colleague who is a surgeon (let's call him gastro #2.) He has no knowledge of my history so I have to spend a bunch of time catching him up; as soon as he hears Celiac he decides the pain is from having Celiac and that I'm 'cheating' on my diet. Seriously. He literally did not believe me when I told him that I was not cheating. I waved my recent blood work at him and said if I was cheating why are my numbers down so close to negative (not quite there yet but hopefully in another 3 or 4 months I will be)? Oh, he also says he's a surgeon and since he can't find anything acute wrong with me (i.e. I don't have an inflamed gallbladder) there's nothing he can for me. He actually said that, "There's nothing I can do for you." But he does want me to go to the lab for a blood work for colon cancer (?!?!) even though he said he totally doesn't think that is an issue in this case. I swear he felt he needed to throw out an idea so he picked that one?!?!

Then gastro #2 talked with gastro #1 and they think I need another ultrasound. Which I still haven't scheduled because they've all pissed me off so much.

Hoping to rest this weekend and will attack it all again next week. *sigh*

I know I am not alone in this...I know most of you have had similar dealings with doctors who don't know or don't care or don't listen. Honestly, sometimes I think these people are hindering my recovery!

*rant over* :rolleyes:

0

Share this post


Link to post
Share on other sites


Ads by Google:

Doctors - an impediment on the path to wellness, because they have the keys that open some of the gates we need to open and pass through. :rolleyes:

2

Share this post


Link to post
Share on other sites

Doctors - an impediment on the path to wellness, because they have the keys that open some of the gates we need to open and pass through. :rolleyes:

Yes! Well said.

What sort of pain are you having? It might just be part of the healing process? Maybe we can figure this out?

Do you still have your gallbladder? If so, have you had a HIDA scan to see if it's working properly? They kept telling me my GB was fine, but when the HIDA scan was done they found it wasn't working right.

0

Share this post


Link to post
Share on other sites

I feel your frustration. I lived it for years. I met my share of idiots who could do nothing to help me, only push drugs. I had bad abdominal pain for so long, my pelvic floor was deeply impacted and my SI joints inflamed, pudendal nerve entrapped, etc.

Of course you are stressed, you HURT! :(

I can offer ((hugs))

and a sonuv(*&^$! on your behalf. <_<

Babs, what does she mean by "functional abdominal pain"??

0

Share this post


Link to post
Share on other sites

Hang in there! I have a 5.5 year old who had severe nighttime joint pain for three years--two pediatricians called it growing pains, to which I said, "nope--it's something more." I suggested we test for Celiac and one said, "That Gluten Free Thing is a fad." She spent about half her life in pain because doctors didn't step up. I finally pulled her off gluten and when she improved looked for a doctor to help prove my hypothesis. Turns out I was right and my darling Twin2 has been pain free since going gluten-free.

My question to you is: "What do YOU think it is?" You are probably right! If you don't know, that's ok too...like someone earlier posted, give us a list and let us see if anyone here can shine some light!

Thinking of you! Get good rest!

0

Share this post


Link to post
Share on other sites




Hang in there! I have a 5.5 year old who had severe nighttime joint pain for three years--two pediatricians called it growing pains, to which I said, "nope--it's something more."

:rolleyes:

This was me.

Do you know what my mother told me about my legs aching as a kid/teenager? "It's growing pains".

Do you know her mother told her?

Same thing.

(after my DX, and discussing our life-long symptoms together, my Mom said sadly, "I'm sorry, honey." and I said "Mom, no worries---how could you have known?"

Good for you for making sure your child is not suffering ANY pain!

:)

It's not "growing pains". There's no such thing! It's inflammation that causes pain.

Pain = something is wrong.

It's joint and bone pain from gluten/celiac.

Doctors = Idiots.

0

Share this post


Link to post
Share on other sites

They really don't have a clue! They say they like challenging cases because it gives them something to think about, but then they do stuff like that... and it makes you go :blink: .

I was talking to someone the other day who was telling me about her son (who is now in his 20's) who has Celiac. He was diagnosed when he was 7 I believe. His teachers always blamed his lack of energy on "laziness." So his parents brought him to the doctor who ran a blood test only to discover that his iron levels were nonexistent. The nurse told his mom that he most likely had leukemia. He was rushed to the hospital and found to have Celiac that same day. He's doing great now! :)

Hang in there BabsV

0

Share this post


Link to post
Share on other sites

Thanks everyone for the responses. The support and information I find is always invaluable...

To answer some questions:

The pain I have is mostly on on my left side, near my ribs...sometimes it starts under the sternum but usually is lower down than that. It often feels tender to the touch and if it is really bad, it feels inflamed on the inside. It wanders over to my right side sometimes but not always. I think one of the doctors referred to it as "left upper quadrant" pain which makes sense considering the location. OTC painkillers don't touch it when it starts up...nothing makes it better. I just have to gut (hehehe) it out till it subsides a bit. It is like the pain I get when I am glutened BUT when I've had it lately I have absolutely no other symptoms of being glutened (anxiety goes off the charts, insomnia, dizziness, loose stool, etc.)

Gastro #1 told me when she came up with "functional abdominal pain" that it is a pain that they cannot find a solid medical explanation for. Her take is that the nerves in my GI tract have gone haywire, are oversensitive and are sending pain messages to my brain when they shouldn't be doing so. I believe it is also called 'non-ulcer stomach pain' by some. They treat it with very low dose tricyclic antidepressants. No one has been eager to try this route since I have a history of serious side effects to a lot of medicines. Personally, I'm willing to try it to see if it helps with the pain (even for just the next couple of months until I can get back to the States) but the doctors won't prescribe them.

I'm wondering if it is another food intolerance that has cropped up. I was reviewing my food diary and I realized that during the period of the flare up I was eating more brown rice and items made with brown rice. I received a care package with some Lundberg rice cakes and gluten-free Rice Crispies (which I trialled for a couple days but didn't stick with...never really been a Rice Crispies fan)...the brown rice connection didn't hit me until I'd had a relatively good day and after a rice blend for dinner (brown and wild) I felt off the next morning. Had the same leftover rice for lunch and by late afternoon was really unhappy.

I figure stress could be adding to it all as I'm in a foreign country with less than stellar medical care. All the doctors specialize to the nth degree which would be awesome if I could find a Celiac specialist but I just haven't been able to do so. I think it is way too "new" for any doctors here to have really paid attention to it. So I have to drag myself from doctor to doctor and they each want to give me some sort of prescription plus an herbal medicine -- they all look shocked when I tell them I'd prefer to be on as few medicines as possible because sometimes they just seem to be throwing meds at me because they don't know what else to do. Prior to diagnosis the various doctors had me on about 6 different prescription meds which honestly were making me feel even worse...not to mention when I showed them to an American doctor he was shocked that one doctor would prescribe two meds that both caused blood pressure issues (no wonder I was dizzy and had to be careful when I stood up!)

Plus, I do not trust food quality here. Ingredients labeling is hit or miss or nonexistent. I've actually seen imported items from the UK that say "suitable for Coeliacs" but the Polish label says "may contain gluten"?!?!? I have been made sick from meat (most is injected with fillers, additive, broths, etc.) here so many times I am reduced to eating fish (frozen, from EU, marked for allergens) and some canned tuna and chicken ordered from the States. At least I can eat beans! I try to stick to as natural as possible plus I've found a few items at TESCO that I can tolerate. Thank God for TESCO and their allergy labels!

I still have my gallbladder. They've talked about a HIDA scan but are having trouble finding a place that can do one. Seriously. I swear the healthcare here is worse than 3rd world at times (I've lived in 3rd world countries and had better care!)

On a positive note there are many health issues that have resolved since I went gluten free -- brain fog is gone, dizziness is gone, I have a lot more energy, nails and hair are growing and strong, my skin no longer looks like paper, I've started to gain some weight (I was skeletal by the time of diagnosis), I'm not nearly so cranky, etc. Plus my 6 month blood tests show a big drop in antibodies...I am close to negative/normal although not quite there yet. Now if the pain issue could just be addressed...I'm confident it will eventually be resolved but sometimes I feel that being in Poland is really hampering my recovery. Very frustrating.

Thanks for listening to my rant.

0

Share this post


Link to post
Share on other sites

Since the pain is in your left side, it is not probably your gall bladder.I had continuing abdominal pain in my abdomen for at least 9 months after DX. I could not, for the life of me, figure out why. The GI did a barium GI study and it revealed nothing.

He said "give it time. Stay off gluten and dairy."

I did and it's gone. But a lot of muscle, tissues, tendons and nerves are involved in the pelvic floor and our abdominals. Strain, stress, inflammation can cause pain that is not detectable on MRIs or Xrays. It can refer pain to the ribs and sternum (mine felt like I had been run over by a car--repeatedly :blink: )

If you think brown rice may be the culprit, you should of course, take that food out for awhile. Since it is sporadic, that seems to be something you can trace.

Your first GI's opinion makes the most sense to me. Pain is generated by bundles of nerves and the GI tract has been inflamed for so long and is trying to calm down.

I am sorry you are in so much pain, especially away from home, and I hope it resolves for you quickly. The fact that your are having so much symptom resolution (yaaay!) shows you are healing and that is wonderful news!

May I offer one last thought? It could be occasional trace gluten getting in you --since you mention the labeling issues? Not enough to hamper test results or your recovery overall, but enough to maybe spark this one annoying/painful symptom from time to time?

I do not get the whole myriad of symptoms like I used to when glutened. I get plenty, :rolleyes: but not all of them and other members report a quicker recovery with fewer symptoms if they are CCed. So maybe you are having the GI pain, but nothing else.?

Just a suggestion. Best wishes.

0

Share this post


Link to post
Share on other sites

If the pain were from your GB it would be URQ, same with liver or pancreas, not ULQ. That's good! :D

It may just be the intestine having a sluggish spell now and then, as it heals, or maybe the rice IS something to look at? Some people just don't handle any grains well at first.

I've gotten pain in that same area and it generally just resolves on it's own..with no other symptoms. It's perfectly normal to get these odd pains now and then as everything is "rebooting". It may be that it's hard for you to digest the brown rice, so it sits there a bit? Take it away for a few days and retry it, but with a digestive enzyme? If you don't have enzymes, try eating it with pineapple or papaya.

It really could be "functional abdominal pain"? :blink: I know that sounds like a BS DX..but it really could be the case?

The healing process is an amazing miracle..with all sorts of quirks!

0

Share this post


Link to post
Share on other sites

I'm sorry you're going through this. I don't really have anything else to say.... I hope you get relief soon. I know it's terrible to be in pain without understanding why.

0

Share this post


Link to post
Share on other sites

May I offer one last thought? It could be occasional trace gluten getting in you --since you mention the labeling issues? Not enough to hamper test results or your recovery overall, but enough to maybe spark this one annoying/painful symptom from time to time?

Yep, I've thought of this. Gluten is everywhere in this country...seriously EVERYWHERE. I've been glutened by plain white rice...could not figure out why I was feeling so cruddy until I realized that it was a different brand of rice and the same company sells a lot of barley (another staple in the Polish diet!) and barley products. I figure it was cross-contamination at some point in processing. Switched back to the old brand and the problem went away.

I honestly felt better after 5 days in Italy and we were eating out twice a day there. The food quality was just so much better there.

Thanks for your input. I just get soooo worn down from the pain and it gets really old. On a happy note I've got confirmation of my appointment with Dr. Fasano at the University of MD Celiac Center on 31 July -- that was his first available but is perfect timing for me! I'm just going to start a countdown to that date to keep my sanity...

0

Share this post


Link to post
Share on other sites

Yep, I've thought of this. Gluten is everywhere in this country...seriously EVERYWHERE. I've been glutened by plain white rice...could not figure out why I was feeling so cruddy until I realized that it was a different brand of rice and the same company sells a lot of barley (another staple in the Polish diet!) and barley products. I figure it was cross-contamination at some point in processing. Switched back to the old brand and the problem went away.

I honestly felt better after 5 days in Italy and we were eating out twice a day there. The food quality was just so much better there.

Thanks for your input. I just get soooo worn down from the pain and it gets really old. On a happy note I've got confirmation of my appointment with Dr. Fasano at the University of MD Celiac Center on 31 July -- that was his first available but is perfect timing for me! I'm just going to start a countdown to that date to keep my sanity...

Congrats on the appointment! He's the best. :D

I'm counting down to my visit with Dr. Murray from Mayo Clinic. I go Apr. 30 for the week.

0

Share this post


Link to post
Share on other sites

If the pain were from your GB it would be URQ, same with liver or pancreas, not ULQ. That's good! :D

It may just be the intestine having a sluggish spell now and then, as it heals, or maybe the rice IS something to look at? Some people just don't handle any grains well at first.

I've gotten pain in that same area and it generally just resolves on it's own..with no other symptoms. It's perfectly normal to get these odd pains now and then as everything is "rebooting". It may be that it's hard for you to digest the brown rice, so it sits there a bit? Take it away for a few days and retry it, but with a digestive enzyme? If you don't have enzymes, try eating it with pineapple or papaya.

It really could be "functional abdominal pain"? :blink: I know that sounds like a BS DX..but it really could be the case?

The healing process is an amazing miracle..with all sorts of quirks!

The issue is the pain is ever-present, it just worsens at times. Very frustrating. I'm totally willing to go with the functional pain idea if anyone would actually be willing to treat it...they all want to take a wait and see approach before they give me TCAs. I think they hope it will either go away OR I will! :rolleyes:

0

Share this post


Link to post
Share on other sites

I'm counting down to my visit with Dr. Murray from Mayo Clinic. I go Apr. 30 for the week.

Oh, I hope that goes well! Post and let everyone know about your experience.

0

Share this post


Link to post
Share on other sites

I honestly felt better after 5 days in Italy and we were eating out twice a day there. The food quality was just so much better there.

Thanks for your input. I just get soooo worn down from the pain and it gets really old. On a happy note I've got confirmation of my appointment with Dr. Fasano at the University of MD Celiac Center on 31 July -- that was his first available but is perfect timing for me! I'm just going to start a countdown to that date to keep my sanity...

I think that is your answer then. CC is getting you.

I agree--this constant 24/7 bone/muscle pain I live with---very OOOLLLLDDD :blink: but at least it is LESS...! :)

Dr. Fasano--lucky girl! :) I would have given anything to have met him when I was wandering aimlessly from doctor to doctor for 3 years before DX. I'd love to ask him a ton of questions!

I would have thought the wait list for him would be a year.

Hang in there!

0

Share this post


Link to post
Share on other sites

Congrats on the appointment! He's the best. :D

I'm counting down to my visit with Dr. Murray from Mayo Clinic. I go Apr. 30 for the week.

He is one of the "top guns" too!

Good for you!! :)

0

Share this post


Link to post
Share on other sites

The issue is the pain is ever-present, it just worsens at times. Very frustrating. I'm totally willing to go with the functional pain idea if anyone would actually be willing to treat it...they all want to take a wait and see approach before they give me TCAs. I think they hope it will either go away OR I will! :rolleyes:

LOL..yes sometimes I think they wish we would just go away? When they don't have the answers it makes them look bad? :lol:

Soo..the pain is there all the time, but sometimes gets worse? Is it worse before..or after you eat?

Did they check you for an ulcer?

I think they are reluctant to prescribe meds because they can't judge the correct dosage when they don't know what is being absorbed? At least they are being cautious about that..it's a good thing. Of course nobody wants to be in pain either? Hopefully, it will soon pass!

(rock) you (hard place)

0

Share this post


Link to post
Share on other sites

Thanks everyone for the responses. The support and information I find is always invaluable...

To answer some questions:

The pain I have is mostly on on my left side, near my ribs...sometimes it starts under the sternum but usually is lower down than that. It often feels tender to the touch and if it is really bad, it feels inflamed on the inside.

Is it on your lower rib on the left side in front? There is a trigger point there for your small intestine, says my MD, who is probably one of the most gluten-literate family practice physicians in the country. I'm a celiac who has been gluten-free for 4.5 years, and in the last 6 months, there have still been times when the pain there is just killer in the morning, when I do my kneeling, collapsing stretch first thing in the morning, and my lower ribs are on my thighs. There is also a trigger point for your liver near there.

0

Share this post


Link to post
Share on other sites

Is it on your lower rib on the left side in front? There is a trigger point there for your small intestine, says my MD, who is probably one of the most gluten-literate family practice physicians in the country. I'm a celiac who has been gluten-free for 4.5 years, and in the last 6 months, there have still been times when the pain there is just killer in the morning, when I do my kneeling, collapsing stretch first thing in the morning, and my lower ribs are on my thighs. There is also a trigger point for your liver near there.

Yep, that sounds about right for the location.

0

Share this post


Link to post
Share on other sites

Soo..the pain is there all the time, but sometimes gets worse? Is it worse before..or after you eat?

Did they check you for an ulcer?

I think they are reluctant to prescribe meds because they can't judge the correct dosage when they don't know what is being absorbed? At least they are being cautious about that..it's a good thing. Of course nobody wants to be in pain either? Hopefully, it will soon pass!

(rock) you (hard place)

Yep, the pain is constant but increases at times. Sometimes it is worse after eating...sometimes not. I've tried to track it to what I'm eating and haven't had much luck other than the brown rice idea. When I was scoped in August 2011 for my biopsy my tummy was pink and happy -- totally normal. At least that is what the doctor said and what is in my report.

Gastro #1 is back in the office on Monday next week and she wants me to come in. She's talking low dose amitriptyline at this point -- she says she hates seeing me in pain and she wants to try to do something about it. Yay! Who knows, I might have horrible side effects and not be able to take it but at least we're trying something different versus "just live with it."

Bummed though because our Berlin trip has been cancelled. I just can't travel in this condition.

0

Share this post


Link to post
Share on other sites

Thanks everyone for the responses. The support and information I find is always invaluable...

To answer some questions:

The pain I have is mostly on on my left side, near my ribs...sometimes it starts under the sternum but usually is lower down than that. It often feels tender to the touch and if it is really bad, it feels inflamed on the inside. It wanders over to my right side sometimes but not always. I think one of the doctors referred to it as "left upper quadrant" pain which makes sense considering the location. OTC painkillers don't touch it when it starts up...nothing makes it better. I just have to gut (hehehe) it out till it subsides a bit. It is like the pain I get when I am glutened BUT when I've had it lately I have absolutely no other symptoms of being glutened (anxiety goes off the charts, insomnia, dizziness, loose stool, etc.)

Gastro #1 told me when she came up with "functional abdominal pain" that it is a pain that they cannot find a solid medical explanation for. Her take is that the nerves in my GI tract have gone haywire, are oversensitive and are sending pain messages to my brain when they shouldn't be doing so. I believe it is also called 'non-ulcer stomach pain' by some. They treat it with very low dose tricyclic antidepressants. No one has been eager to try this route since I have a history of serious side effects to a lot of medicines. Personally, I'm willing to try it to see if it helps with the pain (even for just the next couple of months until I can get back to the States) but the doctors won't prescribe them.

I'm wondering if it is another food intolerance that has cropped up. I was reviewing my food diary and I realized that during the period of the flare up I was eating more brown rice and items made with brown rice. I received a care package with some Lundberg rice cakes and gluten-free Rice Crispies (which I trialled for a couple days but didn't stick with...never really been a Rice Crispies fan)...the brown rice connection didn't hit me until I'd had a relatively good day and after a rice blend for dinner (brown and wild) I felt off the next morning. Had the same leftover rice for lunch and by late afternoon was really unhappy.

I figure stress could be adding to it all as I'm in a foreign country with less than stellar medical care. All the doctors specialize to the nth degree which would be awesome if I could find a Celiac specialist but I just haven't been able to do so. I think it is way too "new" for any doctors here to have really paid attention to it. So I have to drag myself from doctor to doctor and they each want to give me some sort of prescription plus an herbal medicine -- they all look shocked when I tell them I'd prefer to be on as few medicines as possible because sometimes they just seem to be throwing meds at me because they don't know what else to do. Prior to diagnosis the various doctors had me on about 6 different prescription meds which honestly were making me feel even worse...not to mention when I showed them to an American doctor he was shocked that one doctor would prescribe two meds that both caused blood pressure issues (no wonder I was dizzy and had to be careful when I stood up!)

Plus, I do not trust food quality here. Ingredients labeling is hit or miss or nonexistent. I've actually seen imported items from the UK that say "suitable for Coeliacs" but the Polish label says "may contain gluten"?!?!? I have been made sick from meat (most is injected with fillers, additive, broths, etc.) here so many times I am reduced to eating fish (frozen, from EU, marked for allergens) and some canned tuna and chicken ordered from the States. At least I can eat beans! I try to stick to as natural as possible plus I've found a few items at TESCO that I can tolerate. Thank God for TESCO and their allergy labels!

I still have my gallbladder. They've talked about a HIDA scan but are having trouble finding a place that can do one. Seriously. I swear the healthcare here is worse than 3rd world at times (I've lived in 3rd world countries and had better care!)

On a positive note there are many health issues that have resolved since I went gluten free -- brain fog is gone, dizziness is gone, I have a lot more energy, nails and hair are growing and strong, my skin no longer looks like paper, I've started to gain some weight (I was skeletal by the time of diagnosis), I'm not nearly so cranky, etc. Plus my 6 month blood tests show a big drop in antibodies...I am close to negative/normal although not quite there yet. Now if the pain issue could just be addressed...I'm confident it will eventually be resolved but sometimes I feel that being in Poland is really hampering my recovery. Very frustrating.

Thanks for listening to my rant.

Pain under the left side of the rib cage could be many thing...back pain, spleen which run along side the ribs, or it could be the pancreas. http://www.healthhype.com/pain-under-left-rib-cage.html

Pain under the right side in the gallbadder http://www.livestrong.com/article/187679-symptoms-associated-with-gallbladder-problems/

Your spleen and pancreas can become irritated and can swell and will cause this pain. I did an herbal liver cleanse that caused my spleen and pancreas (along with gallbadder) to enlarge so you have to makes sure you are taking in no toxins. The pancreas can react to food allergies such as nuts and it can react after a meal and cause pains after eating. Once otehr thing that could be going on is that your pancreas is not properly regulating your blood sugar, basically the pancreas become exhausted in trying to keep up with what you are putting into your body and it stops working properly.

A trip to the doc is always real good and I would request a 2 hour glucose test just to be on the safe side to rule that out as a possiblity. If you are finding this problem after eating meals, eat lighter. Notice, are you finding this problem after eating nuts, take them out and see if it improves.

I had this problem off and on for a year. Ultrasound showed my pancreas was enlarged but doc was not concerned. He ran a blood test for diabetes and in that year he ran it 3 times and it always came back negative. Finally my neurologist suggested a 2 hour glucose and BINGO! This was only recently that they found this so I am now on a raw foods.....lean meats, eggs, nuts, and veggie diet for 6 weeks.....no fruit, no refined sugar, no potatoes and no grains to relieve the pancreas and hopefully promote healing. This may not be your situation but I thought I would throw it out there to think about.

0

Share this post


Link to post
Share on other sites

A trip to the doc is always real good and I would request a 2 hour glucose test just to be on the safe side to rule that out as a possiblity. If you are finding this problem after eating meals, eat lighter. Notice, are you finding this problem after eating nuts, take them out and see if it improves.

I had this problem off and on for a year. Ultrasound showed my pancreas was enlarged but doc was not concerned. He ran a blood test for diabetes and in that year he ran it 3 times and it always came back negative. Finally my neurologist suggested a 2 hour glucose and BINGO! This was only recently that they found this so I am now on a raw foods.....lean meats, eggs, nuts, and veggie diet for 6 weeks.....no fruit, no refined sugar, no potatoes and no grains to relieve the pancreas and hopefully promote healing. This may not be your situation but I thought I would throw it out there to think about.

Thanks for the suggestion. I'm going to ask the doctor about it -- who knows what she'll say.

0

Share this post


Link to post
Share on other sites

Low dose amitryptilline is often prescribed for conditions like IBS because the gastros believe it quiets the nerves in the gut and stops the spasms. 10 mgs is what they start off with and go up in increments of 10 mgs. I suggest you take it at bedtime because it makes you drowsy.

I tried it years ago for 6 months. He had me on 30 mgs. and I wondered why I slept like the dead :lol: and I found myself groggy all day. I finally stopped taking it (DO NOT stop abruptly! :blink:) This was back in the day--when I did everything a doctor told me. (Wish I could go back and slap myself for that naivete :rolleyes:) I was taking a few meds at the time (from the rheumy and the PCP )to try and control the GERD, the muscle and joint pain, the insomnia, etc. --and as I know now, it was celiac all along. <_< (picture me gritting my teeth here at the memory....arrgh!)

It did not help me at all, but I think we all know why. (I did not have "IBS", Arrgh! but I digress)

This is was my experience and yours may be different.

You should also know that because is it an old-school tricyclic anti-depressant, there are side effects.

Makes sure you doctor is aware of all the prescription and nonprescription medications, vitamins, nutritional supplements, and herbal products you may be taking.

"Be sure to mention any of the following: antihistamines; cimetidine (Tagamet); diet pills; disulfiram (Antabuse); guanethidine (Ismelin); ipratropium (Atrovent); quinidine (Quinidex); medications for irregular heartbeats such as flecainide (Tambocor) and propafenone (Rythmol); medications for anxiety, asthma, colds, irritable bowel disease, mental illness, nausea, Parkinson's disease, seizures, ulcers, or urinary problems; other antidepressants; phenobarbital (Bellatal, Solfoton); sedatives; selective serotonin reuptake inhibitors (SSRIs) such as citalopram (Celexa), fluoxetine (Prozac, Sarafem), fluvoxamine (Luvox), paroxetine (Paxil), and sertraline (Zoloft); sleeping pills; thyroid medications; and tranquilizers. Tell your doctor if you have stopped taking fluoxetine (Prozac, Sarafem) in the past 5 weeks.Your doctor may need to change the doses of your medications or monitor you carefully for side effects. Be sure to mention if you drink large amounts of alcohol and if you have or have ever had glaucoma; difficulty urinating; seizures; an overactive thyroid, schizophrenia,loss of interest in life, and strong or inappropriate emotions; or liver, kidney, or heart disease."

There are various side effects that may diminish: dry mouth, nausea,vomiting, drowsiness,weakness or tiredness,nightmares, headaches,constipation,difficulty urinating, blurred vision, pain, burning, or tingling in the hands or feet,changes in sex drive or ability,excessive sweating, changes in appetite or weight,confusion, unsteadiness.

I gained about 30 lbs. on it.

I am NOT telling you any of this to scare you off from trying it, Babs, honest!--- but just so you know. I would hate for anyone to go through half the crap I went through.

I always find it ironic that the very thing they prescribe for GI problems may cause more GI problems. :rolleyes:

I hope your pain diminishes. I know how much it takes out of you to suffer with it, I really do. :(

0

Share this post


Link to post
Share on other sites

I am NOT telling you any of this to scare you off from trying it, Babs, honest!--- but just so you know. I would hate for anyone to go through half the crap I went through.

Yep, I've read all about it and maybe it just proves how desperate I feel at this time that I'm willing to try it. I also know a couple people who've taken it and not had any bad side effect issues...I just need something to get me through the next 2-3 months until I am back in the States. And something that helps me sleep would be welcome at this point because my sleep has gotten so fractured I can't seem to catch up. Being exhausted definitely does not help with dealing with the pain issues. *sigh*

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,367
    • Total Posts
      920,556
  • Topics

  • Posts

    • This easy to make bean dip makes a great addisiton to any good munching session. Goes gret with salsa and gluten-free beer. View the full article
    • Good grief!  :o. I'm so sorry, I wish there was something I could do or say to help you.  I agree with the NP, your primary needs to be requesting copies of your records from the other doctors, as well as the records and lab reports from your hospital stay.  They are supposed to work together as a team, not just individually out in left field.
    • Just a quick one to say I got a diagnosis of celiac disease today. I know in the past it's been helpful for me to know the outcome for other folk, so thought I would update. The moral of this story is even with a VERY borderline blood test it's worth persisting. thanks for all the help Sue 
    • Our own resident gluten-free expert is Suzie Davies. Suzie has been dedicated to gluten-free products since she was diagnosed with celiac disease ... View the full article
    • Well, I am stressed to the max. I just spent 3 days in the hospital with D and stomach pain, dizziness, chest pain, generally unwell. Then another trip to the ER on top of that. My protein was low and my RBC and hemoglobin dropped below normal in 3 days. Not terribly low, but below normal. I also had metabolic acidosis which still confuses me. I usually eat every 2-3 hours despite it causing pain to keep my energy up and was unable to eat that frequently in the hospital. I usually carry protein with me and had been taking liquid iron which I stopped a few weeks ago because my new endo is not a fan of iron supplements. As soon as I got home from the hospital I started with my protein drinks and blackstrap molasses for iron.  I now have bilateral mild pleural effusions and a nodule on my left lung, which hopefully is nothing, but was not there on a CT back in March. In addition, my left adrenal gland, which also appeared normal in March, is calcified and the report indicates this is most likely due to a previous bleed or infection. My colon appears tortuous (whatever that means) and we are waiting on colon/endo biopsies. I have been gluten-free since March except for cc so expect the biopsies to again be negative.  My primary care is useless. I am in the process of getting a new one I will see on the 7th but need the current one to fill out FMLA paperwork because I both physically and mentally need time to recover. I will have to go off of payroll for 2 weeks but I think I need to. I called the primary's office today to discuss the hospital tests which she does NOT have yet and to ask if we should/could start a low dose of prednisone because my body is attacking itself. My thyroid on ultrasound is also abnormal though my bloodwork thus far is normal. But it hurts on that side. The only reason the ultrasound was ordered is because I asked for it in the first place. The only reason I have started seeing an endocrinologist is because I found one myself. Anyway...I broke down in tears on the phone eith her today and she told me I was having a "manic episode". I have no history of mania. I only recently started taking xanax to help me cope with the stress of being sick. I was not sick until I did this stupid gluten challenge over the winter. My mother was in town and spoke with the doctor on the phone as well who was trying to get my mom to take me to a psych hospital. She also threatened to send the police to check on me. My mother assured her I was in no danger and we hung up the phone in complete shock. Admittedly, I was in tears when I called her and probably sounded like a fucking mess. But I believe I referenced the dropping iron, protein, fluid near lungs, enlarged thyroid and attacked adrenal gland then literally said "my body is attacking itself and I need help" to which she said, "I think you are manic". Lovely. If I was a mess before that phone call it was 10x worse when we hung up.  Anyway, this is the first night it has been extremely difficult to sleep. I admit my thoughts about my odd symptoms keep me up often recently. I mean, who the hell bleeds from or gets an infected adrenal gland?! I am sure it was another time I begged my primary for help. On a side not, the NP at the ER told me the primary should be putting these pieces together and communicating with my other doctors better. He then stated that he used to go to the same practice but left because the practice got too big and like a business. So I got some validation from that chat.  A melatonin or a .25 xanax usually does the trick for me to sleep but I am so disturbed about my interaction today, stressed at my health, stressed that my ex has our son so much because I am always sick (bless him for coming through), stressed that I have to go back to this awful doctor because I will need the FMLA paperwork before I see the new doc on the 7th.  8 months ago, I took a multivitamin when I remembered it and that was it.  End rant. Maybe now that it is off my chest I can finally sleep. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,444
    • Most Online
      1,763

    Newest Member
    Richard Green
    Joined