Hi! So I have a question for everyone. I have been diagnoses with LC for 4 years now. I'm curious to know everyones feedback about what they rate their pain level at. I'm on a GF diet and I have been for around 6 months or so. I was doing pretty well until I accidenly ate some gluten, then went back to the same symptoms of abdominal pain, D- and overall not feeling well. I have abdominal pain every day, but occasionally the pain is so bad that I've hit a curb with my car and almost had my boss call an ambulance because I thought I couldn't make it. The pain is so severe I rate it a 9/10. I have to breath like I'm in labor it's extremely painful. I'm curious to know if anyone else has severe pain like I'm experiencing. I've been tested for celiac disease, I'm negative for chrones disease and I just can't figure out why I keep having this pain if the inflammation I have is "microscopic". Anyones feedback/tips would be much appreciated. I really want to figure out what is going on with me.Thanks.
-Lindsey
Questions about pain.
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Hi Lindsey,
Not all of us have pain with MC, and pain wasn't officially listed as part of the official medical description of the disease. That oversight is why most doctors think that pain is not associated with the disease — they are wrong, of course. Back when I was still reacting, I sometimes had pain of the type that you described. Occasionally a wave of pain would be so bad that it would literally cause me to double over and grit my teeth until it passed. I had to stop whatever I was doing until it let up. Some members here who have experienced it have described it as rivaling the pain of childbirth.
That said, it's also possible for the bloating that goes with a gluten reaction to put pressure on cysts or other issues that might be present in some cases.
IMO, since the pain seems to come and go somewhat quickly, it's probably due to intestinal spasms, but that's just a guess.
Tex
Not all of us have pain with MC, and pain wasn't officially listed as part of the official medical description of the disease. That oversight is why most doctors think that pain is not associated with the disease — they are wrong, of course. Back when I was still reacting, I sometimes had pain of the type that you described. Occasionally a wave of pain would be so bad that it would literally cause me to double over and grit my teeth until it passed. I had to stop whatever I was doing until it let up. Some members here who have experienced it have described it as rivaling the pain of childbirth.
That said, it's also possible for the bloating that goes with a gluten reaction to put pressure on cysts or other issues that might be present in some cases.
IMO, since the pain seems to come and go somewhat quickly, it's probably due to intestinal spasms, but that's just a guess.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hello Lindsey,
Where is your pain located? I have had a couple of instances where I have had a stabbing pain wake me in the middle of the night. So severe that I should have gone to the emergency room but didn't want to inconvenience anyone else
. This pain on a scale from 1 to 10 was a definite 10! Located in the upper right quadrant just underneath the ribs. This pain would last for about an hour and the only relief I would could get is by standing upright. The doctor ordered an ultrasound and hidascan for my gallbladder but it only showed a lot of air in my intestines and a fatty liver. 
I haven't had this occur again since I went gluten free two years ago. I wish I could be more help but it sounds like you've figured out a connection already with gluten ingestion. For me when I eat gluten now, I get flu like aches on top of diarrhea, but that now happens very rarely.
Love
Linda
Where is your pain located? I have had a couple of instances where I have had a stabbing pain wake me in the middle of the night. So severe that I should have gone to the emergency room but didn't want to inconvenience anyone else
. This pain on a scale from 1 to 10 was a definite 10! Located in the upper right quadrant just underneath the ribs. This pain would last for about an hour and the only relief I would could get is by standing upright. The doctor ordered an ultrasound and hidascan for my gallbladder but it only showed a lot of air in my intestines and a fatty liver. I haven't had this occur again since I went gluten free two years ago. I wish I could be more help but it sounds like you've figured out a connection already with gluten ingestion. For me when I eat gluten now, I get flu like aches on top of diarrhea, but that now happens very rarely.Love
Linda
Re: Questions about pain.
Hi Lindsey,lnwatkins wrote:Hi! So I have a question for everyone. I have been diagnoses with LC for 4 years now. I'm curious to know everyones feedback about what they rate their pain level at. I'm on a GF diet and I have been for around 6 months or so. I was doing pretty well until I accidenly ate some gluten, then went back to the same symptoms of abdominal pain, D- and overall not feeling well. I have abdominal pain every day, but occasionally the pain is so bad that I've hit a curb with my car and almost had my boss call an ambulance because I thought I couldn't make it. The pain is so severe I rate it a 9/10. I have to breath like I'm in labor it's extremely painful. I'm curious to know if anyone else has severe pain like I'm experiencing. I've been tested for celiac disease, I'm negative for chrones disease and I just can't figure out why I keep having this pain if the inflammation I have is "microscopic". Anyones feedback/tips would be much appreciated. I really want to figure out what is going on with me.Thanks.
-Lindsey
When I was @ my worst, I definitely had pain that I would rate a 7-8 out of 10. There were times when I walking my dogs that the urge would hit and I would be doubled over in pain until I could relieve myself.
Thanks Guys
Thanks for responding everyone. Yeah I'm trying to figure out what else is going on with me. This has been four years of pain like this. I get the obvious cramps before having to use the restroom, on a scale of a 2-3 and I can handle that. I just hate the pain where I can't focus on anything else but the pain! It really is like being in labor, even my vision changes because the pain is so intense. I think my doctor is going to run some tests, but everything is always coming back negative and normal which is good but also frustrating at the same time. Thanks for the feedback! I'm just nervious I'm going to have to be put im imuran because nothing else is seeming to work.
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fatbuster205
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I too have been suffering with this type of pain - a lot just latelyLindyLou wrote: Located in the upper right quadrant just underneath the ribs. This pain would last for about an hour and the only relief I would could get is by standing upright. The doctor ordered an ultrasound and hidascan for my gallbladder but it only showed a lot of air in my intestines and a fatty liver.
and I am not sure what is causing it! It is sometimes really bad 7-8 but mostly an annoying dull ache (2-3)! I also notice when it is particularly bad my stool is very pale, almost yellow - my own thinking is possibly gall bladder but as the pain often is down at the terminal ileum and all the way up the ascending...??? I find pain is just part and parcel of this disease!Anne
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Sheila
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If your gallbladder checks out okay, your pain could be gastritis. Gallbladder pain at its worst can literally knock you to the floor. It feels like a heart attack, mid-chest going all the way through to your back.
Gastritis hits me after I go to bed. It is mid-chest to upper abdomen and is a 10 on the pain scale. I break into a cold sweat as well. My GI attributed it to the Celebrex I had taken for many years. I stopped the Celebrex but the gastritis attacks still occur periodically. At my wits end one night I started chewing Tums and, miraculously, the pain diminished and then disappeared within 5 minutes. I still get the occasional gastritis attack and immediately start chewing Tums. Works pretty well.
In the bad old days, cramping with D also produced cold sweats and pretty intense pain. That hasn't happened in a while, thank God.
I hope you can figure out what is going on. My GI was concerned that I had an the beginnings of a Celebrex caused ulcer. Could you have an ulcer?
Sheila W
Gastritis hits me after I go to bed. It is mid-chest to upper abdomen and is a 10 on the pain scale. I break into a cold sweat as well. My GI attributed it to the Celebrex I had taken for many years. I stopped the Celebrex but the gastritis attacks still occur periodically. At my wits end one night I started chewing Tums and, miraculously, the pain diminished and then disappeared within 5 minutes. I still get the occasional gastritis attack and immediately start chewing Tums. Works pretty well.
In the bad old days, cramping with D also produced cold sweats and pretty intense pain. That hasn't happened in a while, thank God.
I hope you can figure out what is going on. My GI was concerned that I had an the beginnings of a Celebrex caused ulcer. Could you have an ulcer?
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
A person who never made a mistake never tried something new. Einstein