Tor
as you do more reading, (moreso on this forum than external published articles) you will see that inflammation is the root cause for so many illnesses/conditions. Medications band aid the issue and reduce symptoms, it does not treat the root cause.
what most of us come to learn and prove, is that diet, the right supplements and minerals, adjustments in lifestyle, resolves inflammation. It treats the root cause.
As Big Pharma can not patent diet and supplements and make billions of dollars out of them, it doesnt get the research or respect by specialists it deserves.
Something to keep in mind, Doctors and Specialists do only 1 (maybe 2) semesters on nutrition. Post qualification, ongoing education is provided by Big Pharma, only those interested in nutrition/environmental will do the study and research in those areas.
Just another newbie ...
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Tor:
HLADQ genetic varients have a high association with celiac disease. These varients do not mean that one automatically has celiac disease, but they do increase the risk of developing both celiac disease and non-celiac gluten intolerance. Since this disease runs in families, the fact that a sibling has been diagnosed with it, means you are at higher risk of developing it. Allopathic medicine is taught that if the classic laboratory serum and biopsy markers are negative, then the patient does not have celiac disease. I'm not sure I agree with that diagnostic criteria, but let's leave that discussion for another day. Patients can still be very gluten intolerant. Also, celiac patients have a much higher incidence of microscopic colitis than the general population and you have been diagnosed with MC. IMO, going gluten free should not even be an option here.
Dr. Ann
HLADQ genetic varients have a high association with celiac disease. These varients do not mean that one automatically has celiac disease, but they do increase the risk of developing both celiac disease and non-celiac gluten intolerance. Since this disease runs in families, the fact that a sibling has been diagnosed with it, means you are at higher risk of developing it. Allopathic medicine is taught that if the classic laboratory serum and biopsy markers are negative, then the patient does not have celiac disease. I'm not sure I agree with that diagnostic criteria, but let's leave that discussion for another day. Patients can still be very gluten intolerant. Also, celiac patients have a much higher incidence of microscopic colitis than the general population and you have been diagnosed with MC. IMO, going gluten free should not even be an option here.
Dr. Ann
Tor,
I agree with you that those calprotectin levels would probably be consistent with MC.
HLA DQ2 is the most common gene that predisposes to celiac disease. HLA DQ8 also predisposes to celiac disease, but it is not nearly as common. So you have the most common celiac gene. I also have that gene, and so do many others here. One can be sensitive to gluten without having a celiac gene, but without a celiac gene it is rather unlikely that we would ever meet the formal diagnostic criteria for celiac disease. For someone who has a celiac gene though, once we develop digestive symptoms, if we continue to eat gluten, the odds are rather high that the disease will continue to develop, until the intestinal damage eventually reaches a level where it will meet the diagnostic criteria, and celiac disease will be diagnosable. The comment:
When was the last time that your doctors tested you for anti-tTG antibodies, or anti-gliadin antibodies? A positive anti-gliadin antibody test result would show that your immune system is reacting against gluten, while a positive anti-tTG test result would show that your immune system is attacking your own cells (secondary to the reaction against gluten). Either positive test result would indicate celiac disease.
But as Ann points out, most of us here are reacting against gluten even though we don't have celiac disease, because we have genes that predispose to non-celiac gluten sensitivity, and the doctors have no official test that they can use to diagnose non-celiac gluten sensitivity. The only test that will detect non-celiac gluten sensitivity is the stool test developed by EnteroLab (in Dallas, Texas), and most mainstream doctors refuse to recognize and use that test because the lab offers tests direct to patients, over the internet. Since that cuts doctors out of the loop, it really upsets them, and so most of them refuse to patronize the lab. That leaves them with no way to test for non-celiac gluten sensitivity, unfortunately.
I agree with you that those calprotectin levels would probably be consistent with MC.
HLA DQ2 is the most common gene that predisposes to celiac disease. HLA DQ8 also predisposes to celiac disease, but it is not nearly as common. So you have the most common celiac gene. I also have that gene, and so do many others here. One can be sensitive to gluten without having a celiac gene, but without a celiac gene it is rather unlikely that we would ever meet the formal diagnostic criteria for celiac disease. For someone who has a celiac gene though, once we develop digestive symptoms, if we continue to eat gluten, the odds are rather high that the disease will continue to develop, until the intestinal damage eventually reaches a level where it will meet the diagnostic criteria, and celiac disease will be diagnosable. The comment:
simply means that at the time of the test, your immune system was not producing enough anti-tissue transglutaminase antibodies to qualify for a diagnosis of celiac disease. Transglutaminase is an enzyme normally produced by the body. Therefore, if we produce antibodies against that enzyme (anti-tissue transglutaminase antibodies), then that is defined as an autoimmune reaction, and it can be used as a diagnostic marker for celiac disease.but normal anti-tTG makes active celiac disease unlikely
When was the last time that your doctors tested you for anti-tTG antibodies, or anti-gliadin antibodies? A positive anti-gliadin antibody test result would show that your immune system is reacting against gluten, while a positive anti-tTG test result would show that your immune system is attacking your own cells (secondary to the reaction against gluten). Either positive test result would indicate celiac disease.
But as Ann points out, most of us here are reacting against gluten even though we don't have celiac disease, because we have genes that predispose to non-celiac gluten sensitivity, and the doctors have no official test that they can use to diagnose non-celiac gluten sensitivity. The only test that will detect non-celiac gluten sensitivity is the stool test developed by EnteroLab (in Dallas, Texas), and most mainstream doctors refuse to recognize and use that test because the lab offers tests direct to patients, over the internet. Since that cuts doctors out of the loop, it really upsets them, and so most of them refuse to patronize the lab. That leaves them with no way to test for non-celiac gluten sensitivity, unfortunately.
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.
Thanks again!
I thought I finally had ruled gluten completely out last year after a second gastroscopy with negative biopsies, 9 weeks of gluten free diet and finally the MC diagnosis. Now I'm getting quite motivated for a longer glutenfree trial. It might also be better to control the diarrhea with medicine while gluten free, and then try to ease the medication out. But first I will read some of dr Fines work to be able to consider if an Enterolab test is an option.
Tex asked:
2007: IgA anti-tTG<2, IgG abtu-tTG:<2, IgA anti-gliadin=6, IgA 2,1
2010: IgA anti-tTg<2, IgG anti-gliadin (deam)<5
2013: IgA anti-tTg 0.5, IgG-anti-deam. gliadin<0.4
Alle these are well under the defined pathological level. But I have to say that my sister had negative blood tests as well, but still villous athropy.
For how long do you think a new gluten free test should last before I conclude, Ann and Tex? Will 4 months be sufficient?
Thanks!
---Tor
I thought I finally had ruled gluten completely out last year after a second gastroscopy with negative biopsies, 9 weeks of gluten free diet and finally the MC diagnosis. Now I'm getting quite motivated for a longer glutenfree trial. It might also be better to control the diarrhea with medicine while gluten free, and then try to ease the medication out. But first I will read some of dr Fines work to be able to consider if an Enterolab test is an option.
Tex asked:
These tests have been taken several times over the past 17 years. Both have been negative each time. I found results from 3 of the newer tests:When was the last time that your doctors tested you for anti-tTG antibodies, or anti-gliadin antibodies? A positive anti-gliadin antibody test result would show that your immune system is reacting against gluten, while a positive anti-tTG test result would show that your immune system is attacking your own cells (secondary to the reaction against gluten). Either positive test result would indicate celiac disease.
2007: IgA anti-tTG<2, IgG abtu-tTG:<2, IgA anti-gliadin=6, IgA 2,1
2010: IgA anti-tTg<2, IgG anti-gliadin (deam)<5
2013: IgA anti-tTg 0.5, IgG-anti-deam. gliadin<0.4
Alle these are well under the defined pathological level. But I have to say that my sister had negative blood tests as well, but still villous athropy.
For how long do you think a new gluten free test should last before I conclude, Ann and Tex? Will 4 months be sufficient?
Thanks!
---Tor
Life's hard and then you die
Tor,
Your blood test results so far have clearly been negative. But as you pointed out, the blood tests are often very unreliable. Research shows that until the damage to the villi of the small intestine reaches at least a Marsh 3 level, the blood test results will typically remain negative. Once the damage reaches that level, then the blood tests will usually (not certainly not always) yield a positive result. The following quoted material (taken from pages 107–109 of the book) discusses reasons why the celiac blood tests are so unreliable:
4. Peterson, V. (2011, September 2). Should we screen adults for celiac disease? [Web log message]. Retrieved from http://www.celiaccentral.org/research-n ... bid--6037/
5. Norström, F., Lindholm, L., Sandström, O., Nordyke, K., & Ivarsson, A. (2011). Delay to celiac disease diagnosis and its implications for health-related quality of life. BMC Gastroenterology, 11(1), 118. Retrieved from http://www.biomedcentral.com/1471-230X/11/118
6. Abrams, J. A., Diamond, B., Rotterdam, H., & Green, P. H. (2004). Seronegative celiac disease: increased prevalence with lesser degrees of villous atrophy. Digestive Diseases and Sciences, 49(4):546–550. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/15185855
7. Lähdeaho, M.-L., Mäki, M., Laurila, K., Huhtala, H., & Kaukinen, K. (2011). Small- bowel mucosal changes and antibody responses after low- and moderate-dose gluten challenge in celiac disease. BMC Gastroenterology, 11(1), 129–138. Retrieved from http://www.biomedcentral.com/1471-230X/11/129
Most people on a strict gluten-free diet will respond in 4–6 months, and many will respond much sooner. But some will take longer. It took me a year and a half, but that was because back in those days, no one knew how to go about this, so for almost a year and a half, I avoided only gluten. After I removed all the other foods that were a problem, it only took about 2 weeks for me to reach remission. We are all different in our response to medications and to diet.
So we have to remember that with MC there are almost always additional food sensitivities, and in order to reach remission, most of us have to avoid all of them or we will continue to react. A few of us only have slight reactions to certain foods, and those foods may not be a serious problem for those individuals, but for most of us, if we are sensitive to gluten, casein, and soy, for example, then we have to carefully avoid all of them (even in trace amounts), or we will continue to react. Egg-sensitivity prevents some of us from reaching remission.
That's what makes the EnteroLab test results so helpful. They can remove most of the doubt about which foods are safe, and which ones are not, so that we don't waste our time on a diet that is doomed to fail right from the start. I wish that I had been aware of the EnteroLab tests back when I was trying to recover, but I didn't learn about them until later.
You are very welcome,
Tex
Your blood test results so far have clearly been negative. But as you pointed out, the blood tests are often very unreliable. Research shows that until the damage to the villi of the small intestine reaches at least a Marsh 3 level, the blood test results will typically remain negative. Once the damage reaches that level, then the blood tests will usually (not certainly not always) yield a positive result. The following quoted material (taken from pages 107–109 of the book) discusses reasons why the celiac blood tests are so unreliable:
I added the red emphasis for the purposes of this post. Here are the references from that quote:Sadly, even today, according to the National Foundation for Celiac Awareness, only about 5 % of the total cases of celiac disease are ever diagnosed, let alone all the cases of gluten sensitivity that will always fail to meet the official (and arguably outdated) laboratory diagnostic criteria for celiac disease.4 And recently published research suggests that it still takes an almost unbelievable average of 9.7 years from the onset of symptoms to get a medical diagnosis of celiac disease.5 The medical community currently promotes the claim that celiac disease is a disease of older people. That’s not true. The reality is that doctors are unable to diagnose the disease in most people until later in life, due to poor diagnostic practices.
Since the only known reliable treatment for gluten-sensitive enteropathy is to exclude gluten from the diet, it’s easy to see why the pharmaceutical companies have no incentive to sponsor research related to this issue. But why has the medical profession been so slow to develop improved methods for increasing diagnostic rates to a much more acceptable level? Why doesn’t the fact that roughly 95 % of celiac cases remain undiagnosed serve to inspire an all-out effort to at least attempt to correct this major diagnostic shortcoming? Doesn’t anyone care? The existing track record certainly doesn’t offer much hope of any significant improvements in the near future.
The blood tests used to screen for celiac disease appear to be the primary problem. Research shows that for all practical purposes, they are capable of detecting only fully-developed cases of celiac sprue, and they even miss a large percentage of those. One such study looked at 115 subjects with biopsy-proven celiac disease and found that only 77 % of those who had total villus atrophy showed a positive serum anti-endomysial antibody test result.6 Furthermore, in this particular study, only 71 % of the total number of subjects had total villus atrophy, and for those who had partial villus atrophy, only 33 % showed a positive anti-endomysial antibody test result. As the research report so eloquently pointed out, “Serologic tests, in clinical practice, lack the sensitivity reported in the literature” (Abrams, et al., 2004, p. 547).
In another study, that involved a gluten challenge that was based upon the use of low to moderate amounts of gluten in the diet of subjects who were initially in remission, after a period of 12 weeks, only 43 % of the subjects showed a positive blood test result, even though 71 % of them were experiencing celiac symptoms, and an analysis of their small intestinal biopsies showed that 67 % of them had developed significant changes to various cellular markers of celiac disease.7 All of the subjects who showed a positive blood test result had developed villus atrophy, which seems to correlate with other, similar research.
4. Peterson, V. (2011, September 2). Should we screen adults for celiac disease? [Web log message]. Retrieved from http://www.celiaccentral.org/research-n ... bid--6037/
5. Norström, F., Lindholm, L., Sandström, O., Nordyke, K., & Ivarsson, A. (2011). Delay to celiac disease diagnosis and its implications for health-related quality of life. BMC Gastroenterology, 11(1), 118. Retrieved from http://www.biomedcentral.com/1471-230X/11/118
6. Abrams, J. A., Diamond, B., Rotterdam, H., & Green, P. H. (2004). Seronegative celiac disease: increased prevalence with lesser degrees of villous atrophy. Digestive Diseases and Sciences, 49(4):546–550. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/15185855
7. Lähdeaho, M.-L., Mäki, M., Laurila, K., Huhtala, H., & Kaukinen, K. (2011). Small- bowel mucosal changes and antibody responses after low- and moderate-dose gluten challenge in celiac disease. BMC Gastroenterology, 11(1), 129–138. Retrieved from http://www.biomedcentral.com/1471-230X/11/129
Most people on a strict gluten-free diet will respond in 4–6 months, and many will respond much sooner. But some will take longer. It took me a year and a half, but that was because back in those days, no one knew how to go about this, so for almost a year and a half, I avoided only gluten. After I removed all the other foods that were a problem, it only took about 2 weeks for me to reach remission. We are all different in our response to medications and to diet.
So we have to remember that with MC there are almost always additional food sensitivities, and in order to reach remission, most of us have to avoid all of them or we will continue to react. A few of us only have slight reactions to certain foods, and those foods may not be a serious problem for those individuals, but for most of us, if we are sensitive to gluten, casein, and soy, for example, then we have to carefully avoid all of them (even in trace amounts), or we will continue to react. Egg-sensitivity prevents some of us from reaching remission.
That's what makes the EnteroLab test results so helpful. They can remove most of the doubt about which foods are safe, and which ones are not, so that we don't waste our time on a diet that is doomed to fail right from the start. I wish that I had been aware of the EnteroLab tests back when I was trying to recover, but I didn't learn about them until later.
You are very welcome,
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 Tor!
I have the HLA-DQ2 celiac gene which a recent study demonstrated is more likely to cause celiac than HLA-DQ8. You only need one. The study was on children, and those with DQ2 had a 26% chance of developing celiac in childhood alone! My son has it too...
I am not a confirmed celiac because I started the diet 3 months before getting the blood test, but all my doctors, including the famous celiac doc Alessio Fasano, agree that I have it. My autoimmune disease, Dermatomyositis, is also more common in people with DQ2 genes. I'd like to point out that Dermatomyositis can be triggered by statin use. My Father-in-law gets muscle pain from his statins and refuses to quit them. My husband had severe rhabdomyolysis from a bicep workout once...so they have genetic muscle susceptibility issues. It scares me to think he could end up with my diagnosis (and fewer tools to help himself get better).
I'm interested in this bile acid diarrhea issue. Can anyone describe what it looks like? Does it have a predictable color, texture, odor, etc?
I know I have fat malabsorption, judging from the frequent oil slick in the toilet and weight loss I've experienced. My cholesterol is almost dangerously low (160) but with ideal ratios, and I don't restrict animal fat or calories.
Regarding fatigue and joint pain, I had them and they were almost entirely gluten and dairy related. My persistent hip and back pains disappeared when I went gluten and dairy free, and if I accidentally got glutened, they would return the next morning. The association was unmistakable.
I have the HLA-DQ2 celiac gene which a recent study demonstrated is more likely to cause celiac than HLA-DQ8. You only need one. The study was on children, and those with DQ2 had a 26% chance of developing celiac in childhood alone! My son has it too...
I am not a confirmed celiac because I started the diet 3 months before getting the blood test, but all my doctors, including the famous celiac doc Alessio Fasano, agree that I have it. My autoimmune disease, Dermatomyositis, is also more common in people with DQ2 genes. I'd like to point out that Dermatomyositis can be triggered by statin use. My Father-in-law gets muscle pain from his statins and refuses to quit them. My husband had severe rhabdomyolysis from a bicep workout once...so they have genetic muscle susceptibility issues. It scares me to think he could end up with my diagnosis (and fewer tools to help himself get better).
I'm interested in this bile acid diarrhea issue. Can anyone describe what it looks like? Does it have a predictable color, texture, odor, etc?
I know I have fat malabsorption, judging from the frequent oil slick in the toilet and weight loss I've experienced. My cholesterol is almost dangerously low (160) but with ideal ratios, and I don't restrict animal fat or calories.
Regarding fatigue and joint pain, I had them and they were almost entirely gluten and dairy related. My persistent hip and back pains disappeared when I went gluten and dairy free, and if I accidentally got glutened, they would return the next morning. The association was unmistakable.
I react badly to coffee, and my family owns a coffee farm!! My doctor ordered the Cyrex Labs celiac cross-reactivity blood test, and it showed I was reacting to sesame, buckwheat, amaranth, milk and coffee in the same way I react to gluten (allegedly). So I avoid them all. now.Coffee is the only thing I've noticed has made my diarrhea worse, BTW. Despite that, I have used coffee to overcome the fatigue. Coffee is not supposed to be antigenic, but I'm not so sure ...
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
Zizzle,
I had to deal with bile acid D for a while after gallbladder surgery. I've heard some PP use the term battery acid D....it is like that. It will remove the skin anywhere it touches, burns on the inside and out. Looks a little green. AFAIK it is unrelated to what is eaten. Without a gall bladder bile is just dumped into the intestines constantly instead of in relation to food. The system is designed to repel anything harmful, and so it does.
Those that still have a gallbladder might be a whole different thing.
I had to deal with bile acid D for a while after gallbladder surgery. I've heard some PP use the term battery acid D....it is like that. It will remove the skin anywhere it touches, burns on the inside and out. Looks a little green. AFAIK it is unrelated to what is eaten. Without a gall bladder bile is just dumped into the intestines constantly instead of in relation to food. The system is designed to repel anything harmful, and so it does.
Those that still have a gallbladder might be a whole different thing.
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn