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icelandgirl

Left Side And Rib Pain...anyone Else?

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On 5/5/2017 at 8:13 AM, GeorgeW said:

Thank you for this information.  I will certainly look into it.

I went back to my primary Dr and explained the situation.  He was unaware of the diarrhea (29 days now) and was appalled that the gastro didn't do any further testing.  He also thought it was time for a 2nd opinion from a different gastro.  I was all for it.  So, my primary had me do the stool sample testing over again checking for everything, not just C-dif.  I was given the "kit", which the gastro had never done, with the 4 tubes, 3 partly filled with some liquid and 1 empty.  Also the "hat".  I was worried that I might need a sombrero more than a hat.  It was the most disgusting thing I have ever had to do and I hope I don't have to do it again any time soon.

So I have an appointment with the new gastro this coming Monday but in the meantime, no meds to combat the diarrhea and lately I have avoided leaving the house in fear that I might get an "attack".  Usually my wife and I like to go out to a Mexican restaurant on Cinco de Mayo, but might have to forego it this year.

Hi George!

ive been following this and I'm dying to know how you are doing? Please keep us updated.

victoria

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Thank you for asking! ? So my samples all came back negative. I saw the new gastroenterologist Monday and he was also surprised that the other one didn't run more tests either. Just from my description of what happened he had an idea that it was probably microscopic colitis but he needed a tissue sample so he scheduled a colonoscopy for Friday (2 days ago). I had the colonoscopy and he said that there was inflammation in the sigmoid colon which is probably causing the left side pain. So I have to wait until the tissue sample is analyzed but in the meantime he wants me to take 3 doses of pepto a day. He said that if it's microscopic colitis a low dose steroid would clear it up with no after effects.  He also said that microscopic colitis isn't uncommon in celiacs.

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Hi George,

I wonder if that is what is wrong with me. I've had a pain/pressure on my right and left side. Just below or behind the bottom rib. The right side has been hurting since Sep. With numerous testing they have found nothing. I get diarrhea attacks a couple of times a year that last about 1 month but usually I'm constipated. They finally said I had idiopathic IBS w/constipation. The pressure intensifies when I eat and I can't lie comfortably on my right side. My liver enzymes were a little high so I cut back on the alcohol but nothing has improved. I'm at a loss because the only thing they haven't done is an MRI. I have arthritis in my hips so I have pelvic pain too. It looks like I have some reading to do by the links in this thread.

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1 hour ago, GeorgeW said:

Thank you for asking! ? So my samples all came back negative. I saw the new gastroenterologist Monday and he was also surprised that the other one didn't run more tests either. Just from my description of what happened he had an idea that it was probably microscopic colitis but he needed a tissue sample so he scheduled a colonoscopy for Friday (2 days ago). I had the colonoscopy and he said that there was inflammation in the sigmoid colon which is probably causing the left side pain. So I have to wait until the tissue sample is analyzed but in the meantime he wants me to take 3 doses of pepto a day. He said that if it's microscopic colitis a low dose steroid would clear it up with no after effects.  He also said that microscopic colitis isn't uncommon in celiacs.

Oh wow, that's kind of great if it's that simple! Good luck to you!!!!

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A friend with microscopic colitis had diarrhea and lost 20 pounds. After colonoscopy, she was initially treated with budesonide, a corticosteroid. I don't think she wanted to be on that long term.

So, she went on a restrictive diet  – I think she went on FODMAPS (Fermentable Oligosaccharides, Disaccharides, Monosaccharides and Polyols) or low FODMAPS. At any rate, fiber was what she had to look out for, but which fiber, well that was tricky. Some veggies were ok. Then, she went gluten-free and no sugar. Then she says she could eat baked potato, white rice, eggs. But no citrus. And I think meat and rice were ok too, depending on the type of meat.

There are FODMAPS web sites.

She’s mostly got it under control now and is not having the chronic diarrhea anymore and generally feels a lot better. She is gluten free, though never followed up with any celiac testing.

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Hi all,

Well I got a phone call from my gastro yesterday and he said that microscopic biopsy does indeed show that it is microscopic colitis, otherwise known as lymphocitic colitis.  He did start me on budesonide.  He said 30 days on the steroid and then a weaning off phase and I should be good as new.  Hopefully that is the case.

On 5/14/2017 at 0:05 PM, Hellodee2 said:

Hi George,

I wonder if that is what is wrong with me. I've had a pain/pressure on my right and left side. Just below or behind the bottom rib. The right side has been hurting since Sep. With numerous testing they have found nothing. I get diarrhea attacks a couple of times a year that last about 1 month but usually I'm constipated. They finally said I had idiopathic IBS w/constipation. The pressure intensifies when I eat and I can't lie comfortably on my right side. My liver enzymes were a little high so I cut back on the alcohol but nothing has improved. I'm at a loss because the only thing they haven't done is an MRI. I have arthritis in my hips so I have pelvic pain too. It looks like I have some reading to do by the links in this thread.

Dee,

My pain was always left sided only and my doc said that I had inflammation in the sigmoid colon which is on the left side.  The fact that you have pain on both sides might indicate something else.

George

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Hi George!

I'm so glad that you kept advocating for yourself and that you have an answer!  I hope that you start to feel better really soon!  Please keep us posted. ?

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Great! The GI specialists are working on putting out the fire. Doc says that you should be as good as new, and no doubt you will feel better. Hopefully they understand that colitis is an inflammatory disease and it is probably necessary to make some dietary changes to avoid exacerbating the diarrhea.

 Plumbago

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Thank you all. 

13 hours ago, plumbago said:

Great! The GI specialists are working on putting out the fire. Doc says that you should be as good as new, and no doubt you will feel better. Hopefully they understand that colitis is an inflammatory disease and it is probably necessary to make some dietary changes to avoid exacerbating the diarrhea.

 

 

 Plumbago

I'll cross that bridge when I come to it.  I had an aortic valve replaced in 2010 so I am considered a cardiac patient also.  I am currently on a low sodium, low fat, gluten free diet.  There's not a whole lot more to give up.  At least that's how I feel.

George

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Oh my gosh, I just saw your original post and actually had to look twice at the username - I thought it was something I posted unknowingly! I've been having left side pain, rib area for about a year now. I've been to the ER, doctors - and no solution really. I DID however lose my job over this whole mess (back in Aug 2017). That left me without insurance until the 1st of this year. This pain is so awful that I can't do anything. My life consists of sitting around and doing nothing because movement triggers the pain. 

 

What did you find out? If your pain is gone, what did you do? 

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I had to re-read my whole post, it seems so long ago lol.  Well, the steroid stopped the diarrhea and for that I'm grateful. I still have the pain/lump on my left side although it only flares up occasionally.  In the meantime, I've also developed a lump on the right side of my back over my ribs which has been more painful than the left side.  I told my primary Dr about the new lump which is larger, and he sent me to a surgeon who said that both lumps are fatty tumors.  He claims that they hurt because they are on the same dermatome level as the nerve endings.  I don't know if I believe him but they have not gotten either larger or smaller.  He also told me that he could surgically remove them if they hurt that badly and it would take about 20 minutes a piece.  Sometimes when they really flare up, I want to call him and tell him go ahead but they subside and I try to live with them.  I hadn't mentioned anything further in this thread because I don't believe it's celiac related.  What you are describing sounds more painful and debilitating than what I am experiencing.  I hope you are able to find out what's wrong and that you are able to find relief.

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3 hours ago, hrking75 said:

Oh my gosh, I just saw your original post and actually had to look twice at the username - I thought it was something I posted unknowingly! I've been having left side pain, rib area for about a year now. I've been to the ER, doctors - and no solution really. I DID however lose my job over this whole mess (back in Aug 2017). That left me without insurance until the 1st of this year. This pain is so awful that I can't do anything. My life consists of sitting around and doing nothing because movement triggers the pain. 

 

What did you find out? If your pain is gone, what did you do? 

Hi there

Just chiming in because I too have left sided pain, a lot around my lower ribs.  I have just been diagnosed with costochondritis.  My cartilage in my ribs is inflamed, I dug around a bit yesterday trying to figure out which - looking at an image of ribs on the internet - and discovered it is the cartilage in my 5th and 6th ribs.  What a mistake that was - it kicked the pain off so badly I thought I was going to be sick or was having heart symptoms.  Worst ever attack.

I find movement triggers the pain.  The weird bit is sometimes it is just turning over in bed, leaning over the phone or computer, that sort of thing, and I feel winded.  Yet I can go for a long walk, break through the pain,  and then actually feel a lot better sometimes.

My doctor also hazarded I might have had shingles without the rash four years ago - this is a pain that has haunted me on and off since then.  

I have recently discovered my ttg numbers are elevated so maybe it is coinciding with a celiac flare. 

I'm also having an endoscopy shortly because apparently lower rib pain on the left side can be stomach related.  

In summary, that area feels like a war zone.   I really sympathise.

https://patient.info/health/chest-pain-leaflet/costochondritis

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5 hours ago, hrking75 said:

Oh my gosh, I just saw your original post and actually had to look twice at the username - I thought it was something I posted unknowingly! I've been having left side pain, rib area for about a year now. I've been to the ER, doctors - and no solution really. I DID however lose my job over this whole mess (back in Aug 2017). That left me without insurance until the 1st of this year. This pain is so awful that I can't do anything. My life consists of sitting around and doing nothing because movement triggers the pain. 

 

What did you find out? If your pain is gone, what did you do? 

Hi hrking,

I think mine was due to gluten.  I had it for months leading up to my diagnosis and for a few months after.  I'm pretty sure it was inflammation.  I have gotten it again when I've been glutened, but overall being gluten free has put an end to it.

Hope that helps!

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I was diagnosed with celiac more than 20 years ago and in the last 10 years have experienced the same thing. I would describe it as pinching pain that rolls sideways, across my abdomin. I also noticed a slight bulge or bubble. I'm positive it's from being glutened, even though I'm very careful. 

Lately it has been worse, over a week, every time I eat. Followed by gas and diarrhea. Oddly enough there has been no nausea which is so common for me, and I'm still hungry. Terrified to eat though because it's so painful.

Nice to know I'm not the only one going through this though! 

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I am going to provide an update.  I got glutened two years ago While dealing with a tooth infection (antibiotics), a cold and then the flu.  My DGP IgA was very elevated (off the charts).  Six months later, my DGP IgA was still elevated.  My GI wanted to do a repeat endoscopy, but I refused.  Instead I did the Fasano diet, but I was still having symptoms.   In January 2018, I had the endoscopy which revealed healthy villi.  It also revealed Chronic Autoimmune Gastritis based on gastric biopsies (no h. Pylori).  This was the reason for lingering symptoms. It is the reason why my stomach actually will pinch if I lean forward.  Enough to take my breath away.  The reason for indigestion, reflux, bloating just under my left  rib cage.  

Lesson learned?  Not everything is related to active celiac disease.  My gastric issues ebb and flow.  It is not so easily handled like my celiac disease or Hashimoto’s. 

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Hmmm that's really good to know! I may have to mention that to my Doctor. 

What can be done for it, if anything?

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3 hours ago, ShaunaBree said:

Hmmm that's really good to know! I may have to mention that to my Doctor. 

What can be done for it, if anything?

Unfortunately, nothing.  I am considering following the AIP diet.    Just hate to give up dairy, when it does not seemingly bother me.  I am already grain free and low carb to keep my blood sugar in check (diabetes).  But I can vouch for food healing.  Once I healed from celiac disease initially, my thyroid diagnosed 20 years ago) was no longer enlarged and my nodules disappeared.  However, my thyroid was damaged permanently, so I take thyroid hormone replacement.  I did not have Autoimmune Gastritis when I was diagnosed about six years ago.  Did a gluten exposure bring it on?  Who knows?

Get checked.  It could be anything.  I do know that once you have on autoimmune disorder, you can develop additional ones.  This does not happen to everyone, but it seems pretty common around here!  

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Be careful with budesonide. I was on it and it made my blood pressure go up to very dangerous levels.

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