I recently switched GI doctors. The one I went to before was great in the beginning, but when I went for follow up visits as instructed, he seemed to be in a hurry and barely listening. He also had some billing practices that I wasn't happy with. I work in healthcare and know that some the things he was doing are illegal.
When I requested my records, I received the results of a blood test that I didn't remember having. Probably because I didn't have a clue what it was. It's called Prometheus. All of the Serology Results were in normal limits. The final results says pattern not consistent with IBD. However, all of the Genetic Results were abnormal. From what I've found online, this just seems to confirm that I have an autoimmune problem. Anything else I should know? My new doctor didn't seem to put a lot of stock in it.
I took Cholestyramine for 9-10 months. In the beginning, I only needed 5 packets a week, then 6, then 7. D was starting to return - not daily, but a couple of bad days each week - and I didn't want to take more because I've already had a problem with eroding enamel on my teeth that wasn't a problem at my visit just prior to starting Cholestyramine. So my new physician recommended I try Budesonide (Entocort?). I am on 9 mg per day for at least 6 weeks. I will follow up after a month of this therapy to see where I am. How long does it typically take to work? Since stopping Cholestyramine, I'm pretty much back to where I was before I started it. I've been taking Budesonide for about a week and I think I might be starting to see some improvement, but not a lot. Also, is there a bile blocker that works that is in pill form?
I have a couple of questions
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lisa in lj
- Posts: 15
- Joined: Thu Jun 07, 2012 11:49 am
- Location: Texas
Can you tell us what the genetic tests consisted of? How could your genetics be "abnormal"? Prometheus is a lab used by many alternative doctors. I'm amazed a GI would use them.
Sorry I don't know about bile blocking meds.
Sorry I don't know about bile blocking meds.
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
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lisa in lj
- Posts: 15
- Joined: Thu Jun 07, 2012 11:49 am
- Location: Texas
It was 4 different genetic markers - ATG16L1, ECM1, NKX2-3, and STAT3. For the first three, my result was Mutations Detected and the reference was No Mutations Detected. For the last one, my result was No Mutations Detected and the reference was Mutations Detected.
Also, when it said I didn't have IBD, it was specifically looking for Crohn's or Ulcerative Colitis.
Also, when it said I didn't have IBD, it was specifically looking for Crohn's or Ulcerative Colitis.
Lisa
Hi Lisa,
ATG16L1 stands for Autophagy-related protein 16-1. Mutations in the ATG16L1 gene may be linked to Crohn's disease.
ECM1 stands for extracellular matrix protein 1. This gene encodes a soluble protein that is involved in endochondral bone formation, angiogenesis, and tumor biology. It also interacts with a variety of extracellular and structural proteins, contributing to the maintenance of skin integrity and homeostasis. Mutations in this gene are associated with lipoid proteinosis disorder (also known as hyalinosis cutis et mucosae or Urbach-Wiethe disease) that is characterized by generalized thickening of skin, mucosae and certain viscera.
NKX2-3 stands for Homeobox protein Nkx-2.3. This gene encodes a homeodomain-containing transcription factor. The encoded protein is a member of the NKX family of homeodomain transcription factors. Studies of similar proteins in mouse and rat have indicated a potential role in cellular differentiation.
STAT3 stands for signal transducer and activator of transcription 3. Proper functioning is essential for the differentiation of the TH17 helper T cells, which have been implicated in a variety of autoimmune diseases.
Budesonide is usually effective within a couple of weeks, but in some cases it takes longer. I have no idea whether or not you have made any diet changes to exclude your food sensitivities, but if you have not, now is a good time to do so, because without the diet changes, relapse is almost certain after the budesonide is discontinued. Some of us find it necessary to remove at least our major food sensitivities from our diet before budesonide will work.
Regarding bile acid sequestrants, I believe that both colesevelam and colestipol are available in tablet form.
Tex
ATG16L1 stands for Autophagy-related protein 16-1. Mutations in the ATG16L1 gene may be linked to Crohn's disease.
ECM1 stands for extracellular matrix protein 1. This gene encodes a soluble protein that is involved in endochondral bone formation, angiogenesis, and tumor biology. It also interacts with a variety of extracellular and structural proteins, contributing to the maintenance of skin integrity and homeostasis. Mutations in this gene are associated with lipoid proteinosis disorder (also known as hyalinosis cutis et mucosae or Urbach-Wiethe disease) that is characterized by generalized thickening of skin, mucosae and certain viscera.
NKX2-3 stands for Homeobox protein Nkx-2.3. This gene encodes a homeodomain-containing transcription factor. The encoded protein is a member of the NKX family of homeodomain transcription factors. Studies of similar proteins in mouse and rat have indicated a potential role in cellular differentiation.
STAT3 stands for signal transducer and activator of transcription 3. Proper functioning is essential for the differentiation of the TH17 helper T cells, which have been implicated in a variety of autoimmune diseases.
Budesonide is usually effective within a couple of weeks, but in some cases it takes longer. I have no idea whether or not you have made any diet changes to exclude your food sensitivities, but if you have not, now is a good time to do so, because without the diet changes, relapse is almost certain after the budesonide is discontinued. Some of us find it necessary to remove at least our major food sensitivities from our diet before budesonide will work.
Regarding bile acid sequestrants, I believe that both colesevelam and colestipol are available in tablet form.
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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lisa in lj
- Posts: 15
- Joined: Thu Jun 07, 2012 11:49 am
- Location: Texas
Thanks for the information about the genetic markers and Entocort.
When I was first diagnosed, I went on the 28-day elimination diet. The only things that really seemed to bother me were super spicy foods, caffeine and diet sodas, which I have eliminated. Many processed foods had minor effect, so I haven't completely cut them out, but have cut way back, as I try to stick to a lenient whole foods diet. I say lenient because I do buy most of my food at the grocery store. Gluten and dairy had no effect. I don't consume much soy, so didn't test it.
When I was first diagnosed, I went on the 28-day elimination diet. The only things that really seemed to bother me were super spicy foods, caffeine and diet sodas, which I have eliminated. Many processed foods had minor effect, so I haven't completely cut them out, but have cut way back, as I try to stick to a lenient whole foods diet. I say lenient because I do buy most of my food at the grocery store. Gluten and dairy had no effect. I don't consume much soy, so didn't test it.
Lisa
Lisa,
For most of us, it takes at least several months for a GF diet to show any benefits. There are exceptions of course, and a few lucky people respond much faster, but the half-life of anti-gliadin antibodies is 120 days, so it takes a long time for the level to decay sufficiently so that the sensitivity of the immune system can perform at a more normal level. Many of us don't see any significant improvement in less than 6 months to a year (unless we use an anti-inflammatory drug to mask our symptoms while the diet changes are healing the gut).
By contrast, the half-life of most other food sensitivity antibodies is approximately 6 days, more or less, so responses to those diet changes occur in only a fraction of the time required for the GF diet to show a response. Almost everyone who fails to get a response from the GF diet fails because they didn't allow enough time to see a response from their body (or else their diet was being cross-contaminated by hidden gluten). According to research, approximately 67 % of patients who have MC are gluten-sensitive, but in reality, very, very few of us on this board are not gluten-sensitive.
Many of us here are in remission by diet alone, and we have never even taken an anti-inflammatory drug to treat our disease.
Tex
For most of us, it takes at least several months for a GF diet to show any benefits. There are exceptions of course, and a few lucky people respond much faster, but the half-life of anti-gliadin antibodies is 120 days, so it takes a long time for the level to decay sufficiently so that the sensitivity of the immune system can perform at a more normal level. Many of us don't see any significant improvement in less than 6 months to a year (unless we use an anti-inflammatory drug to mask our symptoms while the diet changes are healing the gut).
By contrast, the half-life of most other food sensitivity antibodies is approximately 6 days, more or less, so responses to those diet changes occur in only a fraction of the time required for the GF diet to show a response. Almost everyone who fails to get a response from the GF diet fails because they didn't allow enough time to see a response from their body (or else their diet was being cross-contaminated by hidden gluten). According to research, approximately 67 % of patients who have MC are gluten-sensitive, but in reality, very, very few of us on this board are not gluten-sensitive.
Many of us here are in remission by diet alone, and we have never even taken an anti-inflammatory drug to treat our disease.
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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lisa in lj
- Posts: 15
- Joined: Thu Jun 07, 2012 11:49 am
- Location: Texas
Tex, is there a test that would say definitively that I have a problem with gluten, or would it just be trial and error? When I was on the elimination diet, I was taking Cholestyramine, so my symptoms were already diminished, but some things, such as caffeine and artificial sweeteners, still caused problems. When I added wheat, there was absolutely no change in my symptoms.
Lisa
Lisa,
We (and many thousands of other satisfied clients) have found the IgA-based stool tests offered by EnteroLab to be by far the most reliable, sensitive, and specific tests available for determining certain food sensitivities. Their anti-gliadin antibody test will even detect celiac disease several years before the damage becomes significant enough to trigger a positive result by means of the classic celiac blood tests. As you may know, the celiac blood tests will only detect fully-developed celiac disease (after a patient has accrued at least a Marsh 3 level of damage to the villi of the small intestine). The EnteroLab tests will detect celiac disease at the Marsh 1 stage. Here is a link to the site showing the tests that I'm referring to:
https://www.enterolab.com/StaticPages/TestInfo.aspx
Most members order Panel A or Panel A + C. Some order the DNA test, also, especially if they are concerned about which genes they may have passed on to their kids. This gene test is about half the price of a similar test offered by Prometheus Laboratories, and it shows all the gluten sensitivity genes, not just the celiac genes (which is all that the Prometheus gene test shows). EnteroLab uses the gene test developed by the Red Cross.
And I am in no way affiliated with this lab — I'm just another happy customer. The founder of the lab, by the way, is Dr. Kenneth Fine, who is a GI specialist who has MC himself. Most mainstream GI docs have an intense dislike for him, because he offers his lab services direct to patients via the internet, so mainstream docs love to bash him and his lab, but the lab is fully accredited by the state of Texas and they do a super job with customer service if anyone needs help understanding their test results.
Or if you prefer, you can order only single tests, (such as for gluten alone).
Virtually all of us here have problems with artificial sweeteners, and most of us have to restrict our intake of any natural sweeteners, at least until we are in remission.
Tex
We (and many thousands of other satisfied clients) have found the IgA-based stool tests offered by EnteroLab to be by far the most reliable, sensitive, and specific tests available for determining certain food sensitivities. Their anti-gliadin antibody test will even detect celiac disease several years before the damage becomes significant enough to trigger a positive result by means of the classic celiac blood tests. As you may know, the celiac blood tests will only detect fully-developed celiac disease (after a patient has accrued at least a Marsh 3 level of damage to the villi of the small intestine). The EnteroLab tests will detect celiac disease at the Marsh 1 stage. Here is a link to the site showing the tests that I'm referring to:
https://www.enterolab.com/StaticPages/TestInfo.aspx
Most members order Panel A or Panel A + C. Some order the DNA test, also, especially if they are concerned about which genes they may have passed on to their kids. This gene test is about half the price of a similar test offered by Prometheus Laboratories, and it shows all the gluten sensitivity genes, not just the celiac genes (which is all that the Prometheus gene test shows). EnteroLab uses the gene test developed by the Red Cross.
And I am in no way affiliated with this lab — I'm just another happy customer. The founder of the lab, by the way, is Dr. Kenneth Fine, who is a GI specialist who has MC himself. Most mainstream GI docs have an intense dislike for him, because he offers his lab services direct to patients via the internet, so mainstream docs love to bash him and his lab, but the lab is fully accredited by the state of Texas and they do a super job with customer service if anyone needs help understanding their test results.
Or if you prefer, you can order only single tests, (such as for gluten alone).
Virtually all of us here have problems with artificial sweeteners, and most of us have to restrict our intake of any natural sweeteners, at least until we are in remission.
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.