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Upper Gi/ribcage Pain

pondy

By pondy
in Coping with Celiac Disease

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pondy Contributor
pondy
Posted
  • Author

Pondy,

Weird to hear you mention your symptoms of rib pain, I have been gluten free nearly 4 months or so and have been not even 1% better, my biggest issue is a constant, and I mean constant deep gnawing ache in my a upper abdomen, and horrendous mid back and rib pain, most of mine is on the right side occasionally on the left, feels like somewhat kidney punched me hard, I walk around bent over holding my ribs as they feel bruised. Even the GI guy at Mayo looked at me like a whack job, saying he has never heard of such a thing and told me to go see a pain clinic doctor. I have had MRI of thoracic spine, cat scan of the chest and abdomen, and chest xray. scheduled tomorrow to get gallbladder out, as most of lovalizes to the right, who knows, at this point in time, I am willing to try anything as well as I just simply feel like dog poo! Constant pain is no way to go through life, prior to this summer I had not a single medical problem and was one of the healthiest 41 y/o guys I know, now I walk around like an old man, b%$@#in and complaining about all my aches and pains, unreal that they have no answers for this, I am praying that removing my gallbladder makes this better, and hope yours gets better too

Whoa, yeah you just kinda summed up my story...

Mine used to be on the right side. Gallbladder checked out okay per HIDDA Scan. It moved over to the left in late October or thereabouts. Regardless, it's never gone away.

Both my Internist & GI (the ones I recently "fired") looked at me the same way - like a complete nut - saying that they've never heard of such a thing. :huh: The GI gave me a script for Ibuprofin (I took just one & the pain actually got worse). The Internist gave me a script for Wellbutrin because, of course, the pain is all in my head & I need a "pep pill"! :wacko: Never used it - first, it's contra-indicated for my dx of generalized anxiety. Second, the pain is NOT in my head, it's in my gut!

Your description - holding your sides b%$@#in & complaining... that's ME spot on! I also have all sorts of strange aches & pains - all over. Everyone has been stumped thus far.

On the positive side though, going totally dairy free is making the GI pain more tolerable. It's still there, but to a slightly lesser extent. I'll take that for now.

Also, I have a new set of doctors who seem more thorough. Tomorrow I have a consultation with a new GI. I have hope...

I'll keep you in my thoughts - best of luck with your surgery tomorrow. Here's hoping that that helps to resolve your issues.

Stay strong & hang in there,

Pondy

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pondy Contributor
pondy
Posted
  • Author

Another quick update here...

Saw a new GI. Here's her plan:

- Forget the Celiac panel blood work because it will likely be negative (due to being gluten free 9 months).

- Endoscopy scheduled for 12/26 due to continued GI issues. She plans to take lots of biopsies & check healing progress.

- Kill off my gut bacteria with a 10 day course of antibiotics, then re-populate with 10 day (or longer) course of probiotics.

- Manage chronic constipation & stool changes with MiraLax because she said as I age, my "slow motility" will likely only get slower. No colonoscopy needed (yet) because the one from March showed no problems. She said the stool changes sound like colon spasms.

- Suggested taking Aloe to sooth my GI tract.

- Suggested staying dairy-free

So, that's where I'm at. Hopefully I feel better soon - or get some answers at the very least.

Thanks for listening!

Pondy

IrishHeart Veteran
IrishHeart
Posted

Sounds like this one knows her stuff. :) hooray!!

Good!

Hang in there.

Keep us posted!

TTNOGluten Explorer
TTNOGluten
Posted

Pondy

Glad to hear you got a solid plan, I am writing this from bed being 1 day out from the gallbladder surgery yesterday. Wow, I was surely mistaken thinking that a laparascopic procedure would be a breeze. I am in all kinds of pain today, but hoping to recover quickly. I an nutshell my surgeon who is a good buddy of mine was quite suprised to find my whole gallbladder covered in adhesions and stuck the floor of my liver, took him 30 minutes just to get adhesions off? He said he figured it would be a quick case as they were not sure if it was gallbladder issues. My gallbladder was sent to the pathologist to look over, but he said it is certainly not normal, and also looked reddened and inflamed. I sure hope this provides some answers as to the source of so much pain. Interestingly the only thing my u/s showed was soem gallbladder polyps, and my HIDA scan was normal. best of luck

pondy Contributor
pondy
Posted
  • Author

Pondy

Glad to hear you got a solid plan, I am writing this from bed being 1 day out from the gallbladder surgery yesterday. Wow, I was surely mistaken thinking that a laparascopic procedure would be a breeze. I am in all kinds of pain today, but hoping to recover quickly. I an nutshell my surgeon who is a good buddy of mine was quite suprised to find my whole gallbladder covered in adhesions and stuck the floor of my liver, took him 30 minutes just to get adhesions off? He said he figured it would be a quick case as they were not sure if it was gallbladder issues. My gallbladder was sent to the pathologist to look over, but he said it is certainly not normal, and also looked reddened and inflamed. I sure hope this provides some answers as to the source of so much pain. Interestingly the only thing my u/s showed was soem gallbladder polyps, and my HIDA scan was normal. best of luck

Well given all that, I'm very glad you had it removed! Here's hoping that it resolves many - if not all - of your issues!

Wish you a speedy recovery - let us know how it's going!

Pondy

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I've been gluten-free for 6 months now. I have severe nausea all of the time. I don't want to eat. The smell of anything cooking makes me sick.

I have pain off and on in my URQ.

About 2 hours after I eat, as the food leaves my stomach and enters the intestine I break out in a sweat all over.

I'm still losing weight and my axiety and insomnia have gotten worse.

When I went to my PCP she prescribed MORE anti-depressants. I asked if she could run a blood panel to see if I was low on some vitamin or mineral that might be causing my symptoms. She asked if I take a multi-vitamin. When I said I did..she said "then that can't be it." She doesn't believe my Celiac DX, because "it's just not likely to be DXed at my age..and my blood work was normal." My endoscope showed severe villi flattening and a duodenal ulcer. (I don't know what she thinks caused that?) She said to come back in 2 weeks.

She had no appointments available in 2 weeks so I was seen by another Resident. He agreed to run the blood panel and prescribed a sleep medication, Sonata.

He called 2 days later and said my iron was very low..I should start supplimenting. I was to come back in 2 weeks.

I took the sleep medication and felt wired. I slept one hour the first night..but not a continuous hour. The second night I didn't sleep at all. I got out the patient info sheet and found the drug doesn't interact well with 4 of the medications I'm on. I quit taking it.

Went back to the "substitute" Dr. He noted I had lost a couple more pounds in the 2 weeks that had passed. He told me I needed to see a dietician and "get on the gluten free diet". I told him I was gluten free from the day I had my scope 6 months ago. He repeated I needed to get on "the gluten free diet". I told him a gluten free diet diet is the same diet everyone should eat, except we don't eat things with gluten. He just wouldn't listen!

He said I had to go back to the dietician. I told him I know what to eat..I just can't eat it because of the nausea. He told me to come back after I met with the dietician. As I checked out I noticed he wrote that I was to see my original Dr. ONLY and underlined it 3 times.

I didn't make an appointment.

I've been so sick with no help and I'm losing hope. It seems like the Dr.s I've seen don't care..or just don't know what they're doing? I got a notice to renew a magazine I've been getting and thought there's no sense ordering it. I may not be here another 12 months.

Yesterday I saw a new GI. He listened to me and looked over the copies of tests I had. He ordered a HIDA scan and a scope for next week. He ordered the genetic test and then called this morning and had another blood test he wanted run. I'm hoping he can get some answers.

How does one go about finding a good PCP?

love2travel Mentor
love2travel
Posted

I've been gluten-free for 6 months now. I have severe nausea all of the time. I don't want to eat. The smell of anything cooking makes me sick.

I have pain off and on in my URQ.

About 2 hours after I eat, as the food leaves my stomach and enters the intestine I break out in a sweat all over.

I'm still losing weight and my axiety and insomnia have gotten worse.

When I went to my PCP she prescribed MORE anti-depressants. I asked if she could run a blood panel to see if I was low on some vitamin or mineral that might be causing my symptoms. She asked if I take a multi-vitamin. When I said I did..she said "then that can't be it." She doesn't believe my Celiac DX, because "it's just not likely to be DXed at my age..and my blood work was normal." My endoscope showed severe villi flattening and a duodenal ulcer. (I don't know what she thinks caused that?) She said to come back in 2 weeks.

She had no appointments available in 2 weeks so I was seen by another Resident. He agreed to run the blood panel and prescribed a sleep medication, Sonata.

He called 2 days later and said my iron was very low..I should start supplimenting. I was to come back in 2 weeks.

I took the sleep medication and felt wired. I slept one hour the first night..but not a continuous hour. The second night I didn't sleep at all. I got out the patient info sheet and found the drug doesn't interact well with 4 of the medications I'm on. I quit taking it.

Went back to the "substitute" Dr. He noted I had lost a couple more pounds in the 2 weeks that had passed. He told me I needed to see a dietician and "get on the gluten free diet". I told him I was gluten free from the day I had my scope 6 months ago. He repeated I needed to get on "the gluten free diet". I told him a gluten free diet diet is the same diet everyone should eat, except we don't eat things with gluten. He just wouldn't listen!

He said I had to go back to the dietician. I told him I know what to eat..I just can't eat it because of the nausea. He told me to come back after I met with the dietician. As I checked out I noticed he wrote that I was to see my original Dr. ONLY and underlined it 3 times.

I didn't make an appointment.

I've been so sick with no help and I'm losing hope. It seems like the Dr.s I've seen don't care..or just don't know what they're doing? I got a notice to renew a magazine I've been getting and thought there's no sense ordering it. I may not be here another 12 months.

Yesterday I saw a new GI. He listened to me and looked over the copies of tests I had. He ordered a HIDA scan and a scope for next week. He ordered the genetic test and then called this morning and had another blood test he wanted run. I'm hoping he can get some answers.

How does one go about finding a good PCP?

I was just thinking about you. I am so sad to hear you are having continued troubles. :( I cannot fathom dealing with such uninformed and uncaring medical professionals. That is absolutely atrocious. If I could I would go in and give them all a good swift kick. Actually, more than that...:angry: On top of all the pain you are having?! Man. I really hope that this new GI is your answer.

I have been in severe pain for four years and have come to the place where I do not allow myself to think beyond tomorrow. I can't. If I think too far ahead I panic, wondering about my future. Are you in too much pain to read a lighthearted book? Perhaps a doctor murder mystery? :rolleyes: Sounds as though you need something to look forward to.

Will you please keep us updated? I'm praying for you! I am a firm believer in miracles. Hopefully yours is just around the corner. :)

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Bubba's Mom Enthusiast
Bubba's Mom
Posted

Thanks so much for your support. I have a stack of magazines to go through..I just can't seem to focus very well. I've pretty much lost my sense of humor..but your mention of a Dr. murder mystery gave me a smile. Thanks for that. :D

I didn't visit the site here for a while because I was in such a bad state of mind. I was afraid I might scare away any newbies that read how I was doing, and how awful my Dr.s have been? You should be able to trust your Dr. They should be informed and helpful..not harmful.

I feel a little more hopeful since seeing the new GI. My endoscope will be on Tuesday. I don't know what he's looking for, but it will be interesting to see what 6 months gluten-free have done.

IrishHeart Veteran
IrishHeart
Posted

Thanks so much for your support. I have a stack of magazines to go through..I just can't seem to focus very well. I've pretty much lost my sense of humor..but your mention of a Dr. murder mystery gave me a smile. Thanks for that. :D

I didn't visit the site here for a while because I was in such a bad state of mind. I was afraid I might scare away any newbies that read how I was doing, and how awful my Dr.s have been? You should be able to trust your Dr. They should be informed and helpful..not harmful.

I feel a little more hopeful since seeing the new GI. My endoscope will be on Tuesday. I don't know what he's looking for, but it will be interesting to see what 6 months gluten-free have done.

Oh hon, I am very sorry to hear you're not feeling well. I wondered where you were! Don't stay away for any reason--we're here for you! Let us know what's going on. Hope you get some answers. IH

ravenwoodglass Mentor
ravenwoodglass
Posted

I've been gluten-free for 6 months now. I have severe nausea all of the time. I don't want to eat. The smell of anything cooking makes me sick.

I have pain off and on in my URQ.

About 2 hours after I eat, as the food leaves my stomach and enters the intestine I break out in a sweat all over.

I'm still losing weight and my axiety and insomnia have gotten worse.

When I went to my PCP she prescribed MORE anti-depressants. I asked if she could run a blood panel to see if I was low on some vitamin or mineral that might be causing my symptoms. She asked if I take a multi-vitamin. When I said I did..she said "then that can't be it." She doesn't believe my Celiac DX, because "it's just not likely to be DXed at my age..and my blood work was normal." My endoscope showed severe villi flattening and a duodenal ulcer. (I don't know what she thinks caused that?) She said to come back in 2 weeks.

She had no appointments available in 2 weeks so I was seen by another Resident. He agreed to run the blood panel and prescribed a sleep medication, Sonata.

He called 2 days later and said my iron was very low..I should start supplimenting. I was to come back in 2 weeks.

I took the sleep medication and felt wired. I slept one hour the first night..but not a continuous hour. The second night I didn't sleep at all. I got out the patient info sheet and found the drug doesn't interact well with 4 of the medications I'm on. I quit taking it.

Went back to the "substitute" Dr. He noted I had lost a couple more pounds in the 2 weeks that had passed. He told me I needed to see a dietician and "get on the gluten free diet". I told him I was gluten free from the day I had my scope 6 months ago. He repeated I needed to get on "the gluten free diet". I told him a gluten free diet diet is the same diet everyone should eat, except we don't eat things with gluten. He just wouldn't listen!

He said I had to go back to the dietician. I told him I know what to eat..I just can't eat it because of the nausea. He told me to come back after I met with the dietician. As I checked out I noticed he wrote that I was to see my original Dr. ONLY and underlined it 3 times.

I didn't make an appointment.

I've been so sick with no help and I'm losing hope. It seems like the Dr.s I've seen don't care..or just don't know what they're doing? I got a notice to renew a magazine I've been getting and thought there's no sense ordering it. I may not be here another 12 months.

Yesterday I saw a new GI. He listened to me and looked over the copies of tests I had. He ordered a HIDA scan and a scope for next week. He ordered the genetic test and then called this morning and had another blood test he wanted run. I'm hoping he can get some answers.

How does one go about finding a good PCP?

So sorry you are having to go through this. I hope you are feeling better soon.

(((((((((((((((((((((((((HUGS)))))))))))))))))))))))

Bubba's Mom Enthusiast
Bubba's Mom
Posted

Thanks so much. You're always so sweet..both of you.

love2travel Mentor
love2travel
Posted

Thanks so much. You're always so sweet..both of you.

You are kind. Did you have a better day today? I look forward to the day you are WELL! We will all celebrate with you. :D

Bubba's Mom Enthusiast
Bubba's Mom
Posted

Had a bad day today. Had to do some shopping and was so nauseated I carried a plastic bag with me "just in case". :(

I get my scope on Tuesday. I hope he can find out what's wrong.

love2travel Mentor
love2travel
Posted

Had a bad day today. Had to do some shopping and was so nauseated I carried a plastic bag with me "just in case". :(

I get my scope on Tuesday. I hope he can find out what's wrong.

Oh, darn it. That is horrible. You know what? I had extreme nausea, cramping, D, etc. for a couple of months and discovered it was a bacterial infection. After a bout of antibiotics (along with doubling up on my probiotics) it disappeared. I, too, carried a bag around everywhere I went. Vomited in the park more than once - thankfully there were trees!

I really hope that you find out what is going on Tuesday. Please let us know! Here I am, cheering you on...

:D:P:D:P:)

Bubba's Mom Enthusiast
Bubba's Mom
Posted

From my reading here I knew to mention SIBO as something that might be looked into when I saw the new GI. I've read that it can be hard to test for. There's one test where they have you breathe into a balloon and then drink a solution that would "feed" the bacteria, then they retest your breath at various intervals. With Celiac disease they can get some false readings though.

When he does the scope he said he'd try to see if he can get some fluid for a culture. I'm just worried he may not find it if it's there? It could be outside of the range of the scope.

It would fit with my continued wasting away.

Those buggers are getting the nutrients from my food before my body can absorb it.

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