Brand new here so forgive any rookie forum mistakes in my post.
April 27 was my one year anniversary of finding out I had celiac. I spent that one year anniversary having a ct scan of abdomen to see if the pain in LLQ was diverticulitis.
going for first colonoscopy in a month and don't know for sure what I am dealing with. was doing well for quite some time and then everything fell apart.
are there tell-tale signs that I also have MC? I have tried the ibs group but no one responds to me there!
my ct scan showed some thickening of transverse colon all the way to sigmoid. report said scattered diverticula and diffuse colitis. does any of this necessarily mean MC? My recent flare up started after putting raw veggies in my new vita mix to make smoothes, use of lactaid milk in my caffeinated tea, and the final coup de gras - suspect creme filled dark chocolate easter candy from PA. all no no's I am sure.... I was feeling so well I took alot of risks here I know. and i am SO ocd about being gluten free and not getting any cc. boy that candy killed me I think.
kinda freakin out about his relapse after doing well for many months.
GF guy worried and with questions.
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Quincy,
Welcome to the board. Sorry to hear that your remission was shattered. As someone who used to have diverticulitis, I can verify that it can cause LLQ pain, and diarrhea.
Clues that you might have MC are things such as celiac-like symptoms that are refractory to a GF diet, (alone). IOW, with MC, we usually have other food sensitivities in addition to gluten. MC tends to cause what is called secretory diarrhea, which presents as urgent, high-volume watery D. Accidents are not uncommon, because the urgency can be so significant that you can be 20 feet from a bathroom when you suddenly feel the urge, and not make it to the John in time.
Through a colonoscope, the colon of someone with MC appears to be normal. The disease can only be diagnosed by examining slides from biopsy samples taken from inflamed areas of the colon during a colonoscopy or a sigmoidscopy. An old joke around here is that the difference between IBS and MC, is biopsy samples. If the GI doc doesn't take biopsies, (from "productive" areas), he or she will never be able to detect MC.
My colon also showed thickening in CT scans, but I'm not sure that's relevant to MC, though it might possibly be evidence of thickened collagen bands.
FWIW, IBS cannot be diagnosed. IBS is what the doctor claims the problem to be when he or she rules out ever other possibility. IOW, it is a default "diagnosis", after every possible disease is ruled out. Actually, all it means is that he or she doesn't have the foggiest idea what is wrong with the patient. IBS doesn't exist, except in the minds of doctors trying to save face. They don't want to tell a patient that they don't have a clue, so they tell the patient that he or she has "IBS". Therefore, since the disease doesn't exist, it's no wonder that an "IBS" board didn't respond to you - they're probably just as lost and confused as the doctors who misdiagnosed them.
Celiac disease and MC seem to have a lot of overlap. We have a fair number of members with both conditions. The good news is that if you control your MC symptoms, the celiac issue will be under control, also. The bad news is that MC is much more difficult to control than celiac sprue. It's doable, though, and usually by diet alone, for most people. You just have to work out a custom diet to suit your food sensitivities. Unfortunately, we are all different, so there is no one-size-fits-all treatment.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the board. Sorry to hear that your remission was shattered. As someone who used to have diverticulitis, I can verify that it can cause LLQ pain, and diarrhea.
Clues that you might have MC are things such as celiac-like symptoms that are refractory to a GF diet, (alone). IOW, with MC, we usually have other food sensitivities in addition to gluten. MC tends to cause what is called secretory diarrhea, which presents as urgent, high-volume watery D. Accidents are not uncommon, because the urgency can be so significant that you can be 20 feet from a bathroom when you suddenly feel the urge, and not make it to the John in time.
Through a colonoscope, the colon of someone with MC appears to be normal. The disease can only be diagnosed by examining slides from biopsy samples taken from inflamed areas of the colon during a colonoscopy or a sigmoidscopy. An old joke around here is that the difference between IBS and MC, is biopsy samples. If the GI doc doesn't take biopsies, (from "productive" areas), he or she will never be able to detect MC.
My colon also showed thickening in CT scans, but I'm not sure that's relevant to MC, though it might possibly be evidence of thickened collagen bands.
FWIW, IBS cannot be diagnosed. IBS is what the doctor claims the problem to be when he or she rules out ever other possibility. IOW, it is a default "diagnosis", after every possible disease is ruled out. Actually, all it means is that he or she doesn't have the foggiest idea what is wrong with the patient. IBS doesn't exist, except in the minds of doctors trying to save face. They don't want to tell a patient that they don't have a clue, so they tell the patient that he or she has "IBS". Therefore, since the disease doesn't exist, it's no wonder that an "IBS" board didn't respond to you - they're probably just as lost and confused as the doctors who misdiagnosed them.
Celiac disease and MC seem to have a lot of overlap. We have a fair number of members with both conditions. The good news is that if you control your MC symptoms, the celiac issue will be under control, also. The bad news is that MC is much more difficult to control than celiac sprue. It's doable, though, and usually by diet alone, for most people. You just have to work out a custom diet to suit your food sensitivities. Unfortunately, we are all different, so there is no one-size-fits-all treatment.
Again, welcome aboard, and please feel free to ask anything.
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.
WELCOME QUINCY!!! 
Tex is the moderator of the board and has given you a great introduction to MC. Hopefully your colonoscopy will include the necessary biopsies to determine whether you have MC.
There is an enormous amount of information about MC here. If you get a positive diagnosis, you will find great resources and support.
Gloria
Tex is the moderator of the board and has given you a great introduction to MC. Hopefully your colonoscopy will include the necessary biopsies to determine whether you have MC.
There is an enormous amount of information about MC here. If you get a positive diagnosis, you will find great resources and support.
Gloria
You never know what you can do until you have to do it.
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annie oakley
- King Penguin
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- Joined: Fri May 13, 2011 5:56 pm
I certainly agree and wish you luck with the lovely colonoscopy***I am do for one myself. We are all here for you. This is the greatest bunch of friends there is, I was a way for a few months and I feel Like it was yesterday,
May I be more compassionate and loving than yeterday*and be able to spot the idiots in advance
Welcome, Quincy -
Sorry you had that relapse and setback, but glad you've found us.
It's especially frustrating after you institute such strict measures in your diet, when you get tripped up by a 'mystery food' - and it takes longer than I had expected to get back on track.
(About the tea - caffeine seems to treat many of us more kindly than dairy, even the lactose-reduced type... though there are some who are very sensitive to caffeine. I am considering dairy to be my 'other gluten' for the moment.)
I can understand why you're freaked out, having been there a lot lately myself. But I hope you've taken a moment to pat yourself on the back for having done so well for months. Seriously, GOOD FOR YOU. Now that you've eliminated gluten, there may be some other mystery food raising its head for your attention. You're already training your observational skills on this problem, so you will solve it, in time.
I am tolerating some raw veg in smoothies myself, but not everyone here is able to do that. And - once we're thrown off by a food we don't tolerate, we seem not to 'bounce' as quickly as I personally had expected. I recently ate a tiny amount of something that had me off-kilter for a week. Some members here report that as they eliminate trigger foods and continue to heal, they rebound better on occasions where an enemy food slips past the defenses. I hope you're feeling better quickly.
Again, welcome,
Sara
Sorry you had that relapse and setback, but glad you've found us.
It's especially frustrating after you institute such strict measures in your diet, when you get tripped up by a 'mystery food' - and it takes longer than I had expected to get back on track.
(About the tea - caffeine seems to treat many of us more kindly than dairy, even the lactose-reduced type... though there are some who are very sensitive to caffeine. I am considering dairy to be my 'other gluten' for the moment.)
I can understand why you're freaked out, having been there a lot lately myself. But I hope you've taken a moment to pat yourself on the back for having done so well for months. Seriously, GOOD FOR YOU. Now that you've eliminated gluten, there may be some other mystery food raising its head for your attention. You're already training your observational skills on this problem, so you will solve it, in time.
I am tolerating some raw veg in smoothies myself, but not everyone here is able to do that. And - once we're thrown off by a food we don't tolerate, we seem not to 'bounce' as quickly as I personally had expected. I recently ate a tiny amount of something that had me off-kilter for a week. Some members here report that as they eliminate trigger foods and continue to heal, they rebound better on occasions where an enemy food slips past the defenses. I hope you're feeling better quickly.
Again, welcome,
Sara
thanks for all the well wishes and the great info. One thing I have already learned from this site is that ibuprofen can trigger MC. I recall now that I was taking ibuprofen to reduce inflammation in my right hip. The doctor gave me celebrex and I only took a few of those, but switched to ibuprofen. in fact I was taking 2 at a time due to some back spasms I was having as well. I have osteopenia from the CD and some bursitis in the right hip, as well as piraformis (?) syndrome which throws me off kilter...
being given levaquin and flagyl for the diverticulitis that turned out not to show up on the scan really put me over the edge as well.
being given levaquin and flagyl for the diverticulitis that turned out not to show up on the scan really put me over the edge as well.
Tex and Quincy and Polly,
My CT scans also show thickening of the colon walls and I have LC via biopsy. So the CT must be able to detect the thickening of the collagen bands from this disease... Because if not from LC, then from what?
Wondering if Polly has had any before/after CT scans that show the possible reduction in thickening based on her recent "clean results" via biopsy?
Rich
My CT scans also show thickening of the colon walls and I have LC via biopsy. So the CT must be able to detect the thickening of the collagen bands from this disease... Because if not from LC, then from what?
Wondering if Polly has had any before/after CT scans that show the possible reduction in thickening based on her recent "clean results" via biopsy?
Rich
"It's not what I believe. It's what I can prove." - A Few Good Men
Rich,
The radiologist report concluded that the "thickening" of the colon wall from the hepatic flexure to the sigmoid along with scattered diverticula was "most consistent with diffuse colitis." After initially freaking out about this, thinking it could be a malignancy, I found Dr Fine's website and his discussions of LC, CC and just realized I would have to wait for a biopsy to figure this out. As Tex said, it might not be all that significant. I saw several postings on celiac.com of people who had the same thing and their biopsies were clean. apparently inflammatory response can cause thickening without any other underlying cause other than years of assault from putrefaction in the gut from malabsorption? Several of the celiac veterans seemed to think so, and my GI was not too concerned with that aspect of the scan. My nutritional FM doctor and her nurse both said that could just be inflammation without underlying CC or LC.
Gloria, forgive me, but what on earth are you able to eat?? after thinking I might have UC or crohn's now I started looking into the SCD and was despairing because I just got used to living on rice and potatoes and hummus for my carbs and now I have to even give that up as well. I have to say I spiraled into despair. I am on an SSRI that I just started to taper off from and now I am back on it full time.....
The radiologist report concluded that the "thickening" of the colon wall from the hepatic flexure to the sigmoid along with scattered diverticula was "most consistent with diffuse colitis." After initially freaking out about this, thinking it could be a malignancy, I found Dr Fine's website and his discussions of LC, CC and just realized I would have to wait for a biopsy to figure this out. As Tex said, it might not be all that significant. I saw several postings on celiac.com of people who had the same thing and their biopsies were clean. apparently inflammatory response can cause thickening without any other underlying cause other than years of assault from putrefaction in the gut from malabsorption? Several of the celiac veterans seemed to think so, and my GI was not too concerned with that aspect of the scan. My nutritional FM doctor and her nurse both said that could just be inflammation without underlying CC or LC.
Gloria, forgive me, but what on earth are you able to eat?? after thinking I might have UC or crohn's now I started looking into the SCD and was despairing because I just got used to living on rice and potatoes and hummus for my carbs and now I have to even give that up as well. I have to say I spiraled into despair. I am on an SSRI that I just started to taper off from and now I am back on it full time.....
My diet is very simple, but I do manage to eat about 1700-2000 calories a day. I began adding pudding and muffins to it last fall because my weight had dropped to 91.5 lbs. Since their addition, I've gained 11 lbs. I would love to add more items, but I'm waiting until I have been off Entocort for another month to be sure that I'm managing my MC with the correct diet.Quincy wrote:Gloria, forgive me, but what on earth are you able to eat??
If you scroll down this thread, you will see the menu plan I use, except I've eliminated ghee. Yesterday, I replaced coconut pudding with corn pudding because I've become suspicious of coconut. Norman (perfect BM) returned today, so perhaps my suspictions were correct. I've been eating this menu since last September.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=13468
Gloria
You never know what you can do until you have to do it.
Quincy,
Welcome to the board. I cannot help with the MC issue as I have not been able to "fix" my problem with it. As far a diverticulitis goes my husband has that which is usually accompanied with constipation. In the last several years he would have the -itis version with pain and would take the antibiotics. This would happen several times a year. In the last year though he started riding a road bicycle. He hasn't had any problems with the -itis ever since. None. The vigorous exercise has kept everything moving we think. Good luck with the colonoscopy. You've kinda figured out what you cannot eat and maybe that will help if you avoid those things.
Pat
Welcome to the board. I cannot help with the MC issue as I have not been able to "fix" my problem with it. As far a diverticulitis goes my husband has that which is usually accompanied with constipation. In the last several years he would have the -itis version with pain and would take the antibiotics. This would happen several times a year. In the last year though he started riding a road bicycle. He hasn't had any problems with the -itis ever since. None. The vigorous exercise has kept everything moving we think. Good luck with the colonoscopy. You've kinda figured out what you cannot eat and maybe that will help if you avoid those things.
Pat
Thanks Pat, I was 6'2 200lbs, muscular, worked out and active and then everything went crazy on me in 2008 into 2009. by 2010 I was 183 pounds with pain in my bones and hip, couldnt work out from the pain in my right hip. Pain under my upper right rib cage went around to the back so I couldnt sleep on my right side without feeling pain. Waking up in the middle of the night in sheer panic attacks with heart racing and sweating like a pig. my healthy lifestyle went off the tracks.
and then the endoscopy said Celiac and I said wtf is celiac??!! Being Irish and Italian I can assure you giving up pizza and pasta was not easy but thank God I love the spuds too. now I have to see if the spuds make me sick too... darn....
so thanks, I am back up to 200 lbs (in fact I hit 210 before the latest bout of D) and working out again despite this recent set back. I have never had a problem with C lately. I had a 2 week period in early 2000's after eating some pizza I got D and then a mysterious bout with C for like 2 weeks! My doc just gave me colace and sent me on my way. I have never had a major problem with C like my mom does...
and then the endoscopy said Celiac and I said wtf is celiac??!! Being Irish and Italian I can assure you giving up pizza and pasta was not easy but thank God I love the spuds too. now I have to see if the spuds make me sick too... darn....
so thanks, I am back up to 200 lbs (in fact I hit 210 before the latest bout of D) and working out again despite this recent set back. I have never had a problem with C lately. I had a 2 week period in early 2000's after eating some pizza I got D and then a mysterious bout with C for like 2 weeks! My doc just gave me colace and sent me on my way. I have never had a major problem with C like my mom does...
