I am 42 and just diagnosed with LC on colonscopy. I had 13 weeks of WD up to 10 times a day with a minimum of 3. I work for my primary care physician who at first wasn't concerned but after six weeks said it was not normal to have diarrhea that long. She sent me to GI who thought it was a delayed reaction to having my gall bladder out last summer. He put me on Welchol which I did not tolerate (pain in abdomen after taking). The symptoms did slow down and stopped one week prior to going for colonoscopy. I almost cancelled it but my husband said to get it done and find out if everything was all right. I also had some abnormal labs with a positive nucleolar ana titre.
I have two questions: 1)pathology showed early stages of LC - does that mean that it's going to come back and be worse?! 2.) when my labs came back, PCP wasn't concerned about the positive ana (this was in June). Should I request to have repeated? I have a lot of hand/joint tightness which we were chalking up to Lyme's disease which I was treated for last year.
Thank you for this forum. I am learning alot and appreciate everyone sharing their life experiences.
LC newbie with questions
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi P. W.,
Welcome to our internet family. The positive ANA result may possibly be connected with the LC. LC tends to cause autoimmune food reactions, and if it is not properly treated, it will eventually lead to additional autoimmune diseases. For example, there is a high correlation between LC and autoimmune thyroid issues, and that might possibly be the source of your elevated ANA result. I would suggest that you get tested for thyroid antibodies, since we are about 7 times as likely as someone in the general population, to have thyroid issues.
Regarding the pathology report stating "early stages of LC", I really don't understand how the pathologist could tell that you are in the early stages of the condition. I'm not aware of any markers that distinguish early stages of the disease from later stages. He or she probably based that observation on the fact that you may have only slightly elevated levels of lymphocyte infiltration, and/or the absence to any thickening of collagen bands, but as far as I'm aware, there's no significant correlation between those markers and the "stage" of the disease.
Once the genes that predispose to MC are triggered, the condition is permanent, for all practical purposes. The symptoms of the disease can certainly be controlled, but it can never be cured, (unless your genes are somehow changed). IOW, except for a lucky few who have spontaneous remissions, virtually all of us here have to maintain a treatment program at all times, (either with meds, diet changes, or a combination of the two), or our symptoms will promptly relapse.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. The positive ANA result may possibly be connected with the LC. LC tends to cause autoimmune food reactions, and if it is not properly treated, it will eventually lead to additional autoimmune diseases. For example, there is a high correlation between LC and autoimmune thyroid issues, and that might possibly be the source of your elevated ANA result. I would suggest that you get tested for thyroid antibodies, since we are about 7 times as likely as someone in the general population, to have thyroid issues.
Regarding the pathology report stating "early stages of LC", I really don't understand how the pathologist could tell that you are in the early stages of the condition. I'm not aware of any markers that distinguish early stages of the disease from later stages. He or she probably based that observation on the fact that you may have only slightly elevated levels of lymphocyte infiltration, and/or the absence to any thickening of collagen bands, but as far as I'm aware, there's no significant correlation between those markers and the "stage" of the disease.
Once the genes that predispose to MC are triggered, the condition is permanent, for all practical purposes. The symptoms of the disease can certainly be controlled, but it can never be cured, (unless your genes are somehow changed). IOW, except for a lucky few who have spontaneous remissions, virtually all of us here have to maintain a treatment program at all times, (either with meds, diet changes, or a combination of the two), or our symptoms will promptly relapse.
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.
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draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
This is definitely the place to get answers! Glad you found it!
I learned the hard way to ask for a copy of the pathology report. It may shed some light on things for you. Tex is really good at reading them--he helped with mine.
Hope you're feeling better soon!
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Welcome!
You will find information, support and solidarity here, and whatever it takes to get your LC under control so you can have your life back.
I couldn't get my doc to run that ANA test at my last visit, but it's on my list... as you're already learning, microscopic colitis has a high rate of co-occurring with other autoimmune conditions. The good news is that your treatment plan for LC will likely help reduce the odds of another AI condition, and reduce or even eliminate many symptoms of any other AI condition you already have. (Maybe your hand/joint tightness will cooperate - here's hoping.)
I have been managing my MC with diet alone since I got here, after a brief and helpful course of Pepto Bismol - you will hear from many other members who have found benefit from medications to get their worst symptoms under control, while they figured out their dietary program. Unfortunately it's not one-size-fits-all, so we can't tell you for sure what will work for you - but being here has shown me so many helpful shortcuts, and I hope you are seeing a glimmer of optimism by being here, too.
You will find information, support and solidarity here, and whatever it takes to get your LC under control so you can have your life back.
I couldn't get my doc to run that ANA test at my last visit, but it's on my list... as you're already learning, microscopic colitis has a high rate of co-occurring with other autoimmune conditions. The good news is that your treatment plan for LC will likely help reduce the odds of another AI condition, and reduce or even eliminate many symptoms of any other AI condition you already have. (Maybe your hand/joint tightness will cooperate - here's hoping.)
I have been managing my MC with diet alone since I got here, after a brief and helpful course of Pepto Bismol - you will hear from many other members who have found benefit from medications to get their worst symptoms under control, while they figured out their dietary program. Unfortunately it's not one-size-fits-all, so we can't tell you for sure what will work for you - but being here has shown me so many helpful shortcuts, and I hope you are seeing a glimmer of optimism by being here, too.
Welcome!!
I also have LC and high ANA titers. I've had high ANA since the birth of my first child when I also had a flare of cutaneous mucinosis. My ANA was 1:1280 for 6 years, and finally dropped to 1:320 a year after starting the gluten free/dairy-free/mostly soy-free diet. I am able to manage my LC symptoms through diet and occasional pepto bismol use. I'm also HLA-DQ2 positive, so I know gluten is a major factor for me.
When my ANA was discovered, they gave me a full autoimmune work-up looking for Lupus, RA or Mixed Connective Tissue Disease. The only ABs that turned up positive were rheumatoid factor and anti-actin/anti-smooth muscle antibody. The last one is tied to autoimmune hepatitis (common in celiac), so I get my liver and kidney function checked at least yearly. I had mild joint pains, mostly in my hips and lower back, which completely went away after I started the diet. You may find your joint pains improve too. Lyme is tied to a number of autoimmune-like outcomes, and from what I understand, it doesn't always fully clear after the first round of antibiotics. Lyme patients also get good symptom relief on a GF diet.
I wouldn't ignore a positive ANA unless it's a very low titer, or unless they can reliably say it's caused by a fully resolved case of Lyme Disease.
I also have LC and high ANA titers. I've had high ANA since the birth of my first child when I also had a flare of cutaneous mucinosis. My ANA was 1:1280 for 6 years, and finally dropped to 1:320 a year after starting the gluten free/dairy-free/mostly soy-free diet. I am able to manage my LC symptoms through diet and occasional pepto bismol use. I'm also HLA-DQ2 positive, so I know gluten is a major factor for me.
When my ANA was discovered, they gave me a full autoimmune work-up looking for Lupus, RA or Mixed Connective Tissue Disease. The only ABs that turned up positive were rheumatoid factor and anti-actin/anti-smooth muscle antibody. The last one is tied to autoimmune hepatitis (common in celiac), so I get my liver and kidney function checked at least yearly. I had mild joint pains, mostly in my hips and lower back, which completely went away after I started the diet. You may find your joint pains improve too. Lyme is tied to a number of autoimmune-like outcomes, and from what I understand, it doesn't always fully clear after the first round of antibiotics. Lyme patients also get good symptom relief on a GF diet.
I wouldn't ignore a positive ANA unless it's a very low titer, or unless they can reliably say it's caused by a fully resolved case of Lyme Disease.
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paceys wife
- Posts: 5
- Joined: Thu Oct 13, 2011 5:29 pm
Thanks for answering! So far all my thyroid testing has been within normal range. I did have repeat of ana's done today so I should know Monday the results....a perk for working for your doctor..no need for holding or waiting for a call back!
Tex, the pathology report does say early LC and my PCP doesn't understand that either, although she isn't too well versed with MC.
I guess I was frightened by what it meant because after 13 weeks of dealing with this whole mess I couldn't imagine what the next go around would be like. I am 123# and lost 8 # over this already. I don't mind losing the weight but not how my body went about it.
Tex, the pathology report does say early LC and my PCP doesn't understand that either, although she isn't too well versed with MC.
I guess I was frightened by what it meant because after 13 weeks of dealing with this whole mess I couldn't imagine what the next go around would be like. I am 123# and lost 8 # over this already. I don't mind losing the weight but not how my body went about it.