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Zizzle,
Thanks for posting the link to the PREVENTION article - I will use it in my campaign to convince my son to be tested at Enterolab. Since I have the double gene for gluten sensitivity, I know for sure that he has at least one, and he already has thyroid issues.
Kari
Apparently it's common for MC'ers to have other autoimmune
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Has he already been tested for celiac disease by his doctor? I would go that route first, and if bloodwork is negative, then spend the $$ on Enterolab. He'd probably be less squimish about giving blood than pooping in a box!! 
That was my biggest mistake--starting the diet after I received my Enterolab results, and knowing I'm not willing to do a gluten challenge to prove I have celiac disease the traditional way.
That was my biggest mistake--starting the diet after I received my Enterolab results, and knowing I'm not willing to do a gluten challenge to prove I have celiac disease the traditional way.1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
Hi Zizzle,
Since he does not have issues with gluten at this point in time, I doubt that any "sensitivity" would show up in the blood on a regular celiac test??? Thought these new blood tests, which are not on the market yet, will determine the "antibodies" present in the system, which is an indicator of what's to come??? Anyway, my thinking is that if these antibodies show up in the stools long before the onset of an actual "disease", then Enterolab is the only game in town right now???
Kari
Since he does not have issues with gluten at this point in time, I doubt that any "sensitivity" would show up in the blood on a regular celiac test??? Thought these new blood tests, which are not on the market yet, will determine the "antibodies" present in the system, which is an indicator of what's to come??? Anyway, my thinking is that if these antibodies show up in the stools long before the onset of an actual "disease", then Enterolab is the only game in town right now???
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Here is the original journal article cited in the blog post that I mentioned. THIS IS BY FAR THE MOST INFORMATIVE ARTICLE I HAVE READ SINCE MY JOURNEY BEGAN. Read the first 3 pages.
http://www.ima.org.il/imaj/ar08jan-3.pdf
Excerpts:
“When self-tolerance is disturbed as a result of inflammatory processes, exposure to chemicals, molecular mimicry with pathogens, vaccination, receptor editing, radiation and genetic background, what follows is dysregulation of the immune system, resulting in the emergence of an autoimmune disease. Elevated autoantibody titers will be detected, followed by autoantibody spread”
“Anti-Saccharomyces cerevisiae antibodies as markers for Crohn’s disease were detected in the sera of apparently healthy subjects on average 3 years before the disease became overt [5]. Their diagnostic sensitivity was 31% but the specificity and the predictive value were both 100%.
The predictive value of anti-tissue transglutaminase and anti-endomysial antibodies for celiac disease onset is 50–60%. If the patient carries the HLA-DQ2 or DQ8 antigens, known to be genetic markers for susceptibility to celiac disease, the PPV of the autoantibodies approaches 100%.”
Some of you may recall I was positive for ANA, Rheumatoid Factor, and Anti-Smooth Muscle/Anti-Actin Antibodies 5 years ago and the titers have increased somewhat since then. Doctors discovered the antibodies while trying to diagnose an itchy post-partum rash (probably Dermatitis Herpetiformis in hindsight). They offered me DMARDS, told me I might have RA or Lupus, told me Autoimmune Hepatitis might develop someday, but also said many HEALTHY people walk around with circulating autoantibodies. I've always thought, they might be healthy in that moment, but something is surely brewing. And I'm right. Had I done something then, I might not have developed MC last year. Had I not started the GF diet, I would surely have celiac hepatitis in less than 10 years. My doctors continue to test my liver enzymes and other chemistries in an effot to "catch" disease when it appears, but I'm saying that's not good enough. I want to PREVENT it. I've been told NO vaccines or immune stimulating herbs, and I agree.
I've also read a number of studies that use Anti-Actin/Smooth Muscle antibodies as a marker of celiac damage. Even in the absence of the traditional celiac antibodies when a person starts a GF diet, Anti-Actin is still present when there continues to be intestinal damage. It is this precise antibody that attacks the microfilaments of the intestinal villi. I've had high levels of this antibody for 5 years, and it has not gone down, even after 2 months on the GF diet. My doctors follow it to track my risk of autoimmune hepatitis - now I know it's related to my intestines too. If you have enough of it circulating in your body for enough time, it will eventually attack your liver too. DUH!! Now I wonder, could Anti-Actin be present in MC without celiac-related small intestine damage? Could it relate to the damage we experience in the large intestine??
Read these abstracts and article:
1) http://www.ncbi.nlm.nih.gov/pubmed/1612 ... &linkpos=2
2) http://www.ncbi.nlm.nih.gov/pubmed/17652043
3) http://www.ncbi.nlm.nih.gov/sites/ppmc/ ... MC1809109/
I am more convinced than ever that I do have celiac disease, and I probably caught it before I developed significant malabsorption.
I am also convinced that everyone with MC should have bloodwork to test for a variety of autoantibodies, so they can know where their disease is likely to progress - and perhaps prevent it.
I'm am going to post this on the main forum, so please excuse the cross posting. I'm fired up!!
http://www.ima.org.il/imaj/ar08jan-3.pdf
Excerpts:
“When self-tolerance is disturbed as a result of inflammatory processes, exposure to chemicals, molecular mimicry with pathogens, vaccination, receptor editing, radiation and genetic background, what follows is dysregulation of the immune system, resulting in the emergence of an autoimmune disease. Elevated autoantibody titers will be detected, followed by autoantibody spread”
“Anti-Saccharomyces cerevisiae antibodies as markers for Crohn’s disease were detected in the sera of apparently healthy subjects on average 3 years before the disease became overt [5]. Their diagnostic sensitivity was 31% but the specificity and the predictive value were both 100%.
The predictive value of anti-tissue transglutaminase and anti-endomysial antibodies for celiac disease onset is 50–60%. If the patient carries the HLA-DQ2 or DQ8 antigens, known to be genetic markers for susceptibility to celiac disease, the PPV of the autoantibodies approaches 100%.”
Some of you may recall I was positive for ANA, Rheumatoid Factor, and Anti-Smooth Muscle/Anti-Actin Antibodies 5 years ago and the titers have increased somewhat since then. Doctors discovered the antibodies while trying to diagnose an itchy post-partum rash (probably Dermatitis Herpetiformis in hindsight). They offered me DMARDS, told me I might have RA or Lupus, told me Autoimmune Hepatitis might develop someday, but also said many HEALTHY people walk around with circulating autoantibodies. I've always thought, they might be healthy in that moment, but something is surely brewing. And I'm right. Had I done something then, I might not have developed MC last year. Had I not started the GF diet, I would surely have celiac hepatitis in less than 10 years. My doctors continue to test my liver enzymes and other chemistries in an effot to "catch" disease when it appears, but I'm saying that's not good enough. I want to PREVENT it. I've been told NO vaccines or immune stimulating herbs, and I agree.
I've also read a number of studies that use Anti-Actin/Smooth Muscle antibodies as a marker of celiac damage. Even in the absence of the traditional celiac antibodies when a person starts a GF diet, Anti-Actin is still present when there continues to be intestinal damage. It is this precise antibody that attacks the microfilaments of the intestinal villi. I've had high levels of this antibody for 5 years, and it has not gone down, even after 2 months on the GF diet. My doctors follow it to track my risk of autoimmune hepatitis - now I know it's related to my intestines too. If you have enough of it circulating in your body for enough time, it will eventually attack your liver too. DUH!! Now I wonder, could Anti-Actin be present in MC without celiac-related small intestine damage? Could it relate to the damage we experience in the large intestine??
Read these abstracts and article:
1) http://www.ncbi.nlm.nih.gov/pubmed/1612 ... &linkpos=2
2) http://www.ncbi.nlm.nih.gov/pubmed/17652043
3) http://www.ncbi.nlm.nih.gov/sites/ppmc/ ... MC1809109/
I am more convinced than ever that I do have celiac disease, and I probably caught it before I developed significant malabsorption.
I am also convinced that everyone with MC should have bloodwork to test for a variety of autoantibodies, so they can know where their disease is likely to progress - and perhaps prevent it.
I'm am going to post this on the main forum, so please excuse the cross posting. I'm fired up!!
Dear Zizzle
Just load that there gun up with a couple of bullets and play some Russian roulette would you 'dear' patient! If it blows your head off well we will have a "positive result"... yepeee! Oh and you need to pay for the gun, bullets, professional diagnosis and cleaning up the mess afterwards........
What with low vits and minerals, osteoporosis, chronic D and lymphocytes going nuts in that part of the intestines they look at (which of course happened not to be the small intestines ) I already have plenty of clinical and other evidence suggesting gluten intolerance/celiac ....and that is before Enterolabs showed the classic Celicac antibodies (big time) and TWO genes that make me susceptible to gluten intolerance.
The most ridiculous part of all is that going on a GF, DF, SF diet is not even a dangerous option. In fact it is a healthy option even if I am not gluten intolerant!!!
It is all complete
END OF RANT ANT!!
Best, ant
Ditto!! Why they did not test for Celiac earlier I have no idea. Now, once I tell my GI I am doing well with a GF diet (which he never recommended) he suggests a Gluten challenge and then the traditional tests.I received my Enterolab results, and knowing I'm not willing to do a gluten challenge to prove I have celiac disease the traditional way.
Just load that there gun up with a couple of bullets and play some Russian roulette would you 'dear' patient! If it blows your head off well we will have a "positive result"... yepeee! Oh and you need to pay for the gun, bullets, professional diagnosis and cleaning up the mess afterwards........
What with low vits and minerals, osteoporosis, chronic D and lymphocytes going nuts in that part of the intestines they look at (which of course happened not to be the small intestines ) I already have plenty of clinical and other evidence suggesting gluten intolerance/celiac ....and that is before Enterolabs showed the classic Celicac antibodies (big time) and TWO genes that make me susceptible to gluten intolerance.
The most ridiculous part of all is that going on a GF, DF, SF diet is not even a dangerous option. In fact it is a healthy option even if I am not gluten intolerant!!!
It is all complete
END OF RANT ANT!!
Best, ant
That happens consistently, because most GI docs are asleep at the wheel, (by default), anytime dietary issues are in question. Unless someone whops them over the head with a 2x4, their brain seems to be in neutral, most of the time.Ant wrote:Why they did not test for Celiac earlier I have no idea.
Truer "words" were never spoken.Ant wrote:It is all complete
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.
Ant,
I brought a list of celiac symptoms to my GI, point blank told her I had nearly all of them, and asked her to test me. She REFUSED, saying since my antibodies were negative 5 years ago, there was no way I could have the disease now. Of course she wasn't thinking about the high rate of false negatives, or the fact the celiac can start at any time.
Kari,
The vast majority of celiacs do not have "problems" with gluten. They are asymptomatic for a very long time, sometimes forever. But the fact that he's having thyroid issues (if they are autoimmune) is a warning sign that something is going on. It's worth checking. Many docs believe everyone with autoimmune thyroid disease should be tested for celiac disease, because they are so often found together and related to the same genes. Of course I have a friend with Hashimoto's, who's mom and grandma had Hashimotos, and who has aunts/uncles diagnosed with celiac disease. Her endocrinologist insists autoimmune thyroid conditions almost always happen by themselves and has never had a patient develop other autoimmune diseases. Yeah right!!!!!!!
Her husband also has IBS, his brother has celiac, and their 2 kids have skin and digestive issues. HOW MUCH MORE DOES ONE NEED TO HAVE THE FAMILY TESTED?!?! I remind her at least monthly and she says she'll do it next time she sees her PCP.
I brought a list of celiac symptoms to my GI, point blank told her I had nearly all of them, and asked her to test me. She REFUSED, saying since my antibodies were negative 5 years ago, there was no way I could have the disease now. Of course she wasn't thinking about the high rate of false negatives, or the fact the celiac can start at any time.
Kari,
The vast majority of celiacs do not have "problems" with gluten. They are asymptomatic for a very long time, sometimes forever. But the fact that he's having thyroid issues (if they are autoimmune) is a warning sign that something is going on. It's worth checking. Many docs believe everyone with autoimmune thyroid disease should be tested for celiac disease, because they are so often found together and related to the same genes. Of course I have a friend with Hashimoto's, who's mom and grandma had Hashimotos, and who has aunts/uncles diagnosed with celiac disease. Her endocrinologist insists autoimmune thyroid conditions almost always happen by themselves and has never had a patient develop other autoimmune diseases. Yeah right!!!!!!!
Her husband also has IBS, his brother has celiac, and their 2 kids have skin and digestive issues. HOW MUCH MORE DOES ONE NEED TO HAVE THE FAMILY TESTED?!?! I remind her at least monthly and she says she'll do it next time she sees her PCP.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone