Thanks everyone for your posts. I still am confused about gluten and MC. If you cannot tolerate gluten then why are you diagnosed with MC instead of CS?
If you can eat foods with gluten and have no problems.....then how can you be considered as asymptomatic with respect to gluten.....especially if the endoscopy shows no damage to the small intestine.
I am not doubting for one minute those on here who know that they cannot tolerate gluten....I just don't understand why a GI has not diagnosed their problem as CS instead of MC.
Issy
Placebo effect of gluten free diet
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My GI made the statement to me that his diagnosis for CS is based on damage to the villi in the colon. If you don't have this damage, you don't have CS.
In the biopsy results he saw whatever it is they see that shows I have MC (LC).
In his world, I could not be intolerant of gluten because I don't have CS because I don't have villi damage.
He knows I am intolerant of gluten because going gf has had astounding results, from constant explosive D, wearing a diaper, and being housebound, to living a normal life.
He's come around to the idea that diet is playing a part in MC, but he also said, in my last visit, that perhaps I do have CS (because of the impact of going gf) and he missed it somehow!
I shall continue to educate him!
In the biopsy results he saw whatever it is they see that shows I have MC (LC).
In his world, I could not be intolerant of gluten because I don't have CS because I don't have villi damage.
He knows I am intolerant of gluten because going gf has had astounding results, from constant explosive D, wearing a diaper, and being housebound, to living a normal life.
He's come around to the idea that diet is playing a part in MC, but he also said, in my last visit, that perhaps I do have CS (because of the impact of going gf) and he missed it somehow!
I shall continue to educate him!
Maxine
Maxine,
Your GI and Dr. Nehra have alot in common - they are having a hard time believing what their patients are telling them. I have to beleive it is their big egos that get in the way. If you know something they don't they feel threatened and automatically dispute it. After all, how can you possibly know more than they do????
Mary Beth
Your GI and Dr. Nehra have alot in common - they are having a hard time believing what their patients are telling them. I have to beleive it is their big egos that get in the way. If you know something they don't they feel threatened and automatically dispute it. After all, how can you possibly know more than they do????
Mary Beth
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Gabes-Apg
- Emperor Penguin
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at this stage i wouldnt waste my energy..... they are too far gone (their ego's, their relationship with the big pharma's etc) until a gluten free food company buys them weekends away and new golf clubs they will not change their beliefs....
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Issy,
Those are good questions. Here are my thoughts on them:
Furthermore, mainstream medicine has no diagnostic criteria for diagnosing non-celiac gluten sensitivity, (their tests will not detect anything less than fully-developed celiac disease, so they have no way of diagnosing the type of gluten sensitivity that goes with MC, (since they are not willing to endorse the validity of stool tests for this purpose). We are just as sensitive to gluten as celiacs, but the blood tests are not sensitive enough to detect the antibodies.
The diagnostic criteria for celiac disease are:
1. Either gliadin antibodies, or anti-tissue transglutaminase antibodies in the blood, in excess of a "normal" level
2. Measurable damage to the villi of the small intestine
MC meets neither of those diagnostic criteria - the blood tests are not sensitive enough to detect the antibodies with MC, and most of the intestinal damage is in the colon, not the small intestine. Everyone diagnosed with MC, has inflammation in their colon. They may or may not have inflammation in their small intestine. Everyone diagnosed with celiac sprue, has inflammation in their small intestine. They may or may not have inflammation in their colon. MC and CS are two distinctly different diseases.
Tex
Those are good questions. Here are my thoughts on them:
Doctors are restrained to make diagnoses according to specific guidelines, based to how the respective diseases are described, and the proper diagnostic criteria are carefully defined for each disease. Classic celiac disease is defined as a disease of the small intestine, therefore, according to their diagnostic criteria, MC has nothing to do with celiac disease, since it is defined as a disease of the colon. Actually, MC also involves the small intestine, but since it was not described that way, doctors technically are not allowed to associate it with celiac disease, (in their minds, at least).Issy wrote:Thanks everyone for your posts. I still am confused about gluten and MC. If you cannot tolerate gluten then why are you diagnosed with MC instead of CS?
Furthermore, mainstream medicine has no diagnostic criteria for diagnosing non-celiac gluten sensitivity, (their tests will not detect anything less than fully-developed celiac disease, so they have no way of diagnosing the type of gluten sensitivity that goes with MC, (since they are not willing to endorse the validity of stool tests for this purpose). We are just as sensitive to gluten as celiacs, but the blood tests are not sensitive enough to detect the antibodies.
The diagnostic criteria for celiac disease are:
1. Either gliadin antibodies, or anti-tissue transglutaminase antibodies in the blood, in excess of a "normal" level
2. Measurable damage to the villi of the small intestine
MC meets neither of those diagnostic criteria - the blood tests are not sensitive enough to detect the antibodies with MC, and most of the intestinal damage is in the colon, not the small intestine. Everyone diagnosed with MC, has inflammation in their colon. They may or may not have inflammation in their small intestine. Everyone diagnosed with celiac sprue, has inflammation in their small intestine. They may or may not have inflammation in their colon. MC and CS are two distinctly different diseases.
If you are sensitive to gluten, (IOW, if you produce antibodies to the alpha gliadin in gluten, or if you produce anti-tissue transglutaminase antibodies, indicating that you are experiencing an autoimmune reaction), but you do not have clinical symptoms, (IOW, you have no D, or C), then you are asymptomatic. Forget the celiac tests - they do not work for people with MC. If you want to see if you are sensitive to gluten, send a sample to Enterolab, and find out once and for all, whether or not you are producing antibodies to gliadin, and/or anti-tissue transglutaminase antibodies. That's the only test method available, that's reliable and accurate, for detecting non-celiac gluten sensitivity.Issy wrote:If you can eat foods with gluten and have no problems.....then how can you be considered as asymptomatic with respect to gluten.....especially if the endoscopy shows no damage to the small intestine.
Because we do not have classic celiac sprue, according to the diagnostic criteria used for CS. MC is not celiac sprue, and celiac sprue is not MC. They are two distinct diseases, but they are both caused by gluten sensitivity. Not everyone with MC is gluten-sensitive, but the vast majority of us are. There is evidence that all autoimmune diseases are caused by gluten-sensitivity, but mainstream medicine has not recognized that yet, and it will probably be many, many years before they come to that realization, but even when they do, that will not mean that all autoimmune diseases are the same disease. They are all different diseases, with a common cause.Issy wrote:I am not doubting for one minute those on here who know that they cannot tolerate gluten....I just don't understand why a GI has not diagnosed their problem as CS instead of MC.
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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Gabes-Apg
- Emperor Penguin
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- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
When my digstion issues were IBS
If i had diary i would get D
if i had gluten i would get constipated
If i had pizza, it seemed to balance out
i just had bloating, gas and cramping discomfort for about 24 hours!
gluten/yeast/dairy treats were only on the weekends....
If i had diary i would get D
if i had gluten i would get constipated
If i had pizza, it seemed to balance out
i just had bloating, gas and cramping discomfort for about 24 hours!gluten/yeast/dairy treats were only on the weekends....
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
What I can add to Tex's last post; I think (but this is just my thinking not based on something) in some cases with MC there is also a possibility of intestinal damage. Only maybe on other places in het small intestine than with celiac. The small intestine is loooong and with celiac the only take samples of the first part. As long as it is not known that a combination of MC and small intestine damage can exits, GI's won't look for it. Why else can so many here have problems with low B12, low vit D and osteoporoses? Not forget to mention the high fat quantity in the stools (see the results of enterolab testing). Or maybe it is another kind of small intestine damage (or is besides the colon also the small intestine inflamed). A lot about this disease is still unknown (well not by us, by the medical profession).
What I am also sure about (due to my own experiences and what I have learned an read here), MC is more than just disease a bowel inflammation with one symptom: D. There are a lot of other symptoms. It does something with the mind. I mean really something to the mind, because of the disease, as a symptom. Not because you have MC and it may difficult to deal with. To many here are depressed, taking anti depressive medication or suffered from depression. What I noticed, since my D started last year May. I can handle less than before. Things are easily just to much. And with to much I mean mentally, not physically.
What I am also sure about (due to my own experiences and what I have learned an read here), MC is more than just disease a bowel inflammation with one symptom: D. There are a lot of other symptoms. It does something with the mind. I mean really something to the mind, because of the disease, as a symptom. Not because you have MC and it may difficult to deal with. To many here are depressed, taking anti depressive medication or suffered from depression. What I noticed, since my D started last year May. I can handle less than before. Things are easily just to much. And with to much I mean mentally, not physically.
Harma,
You are correct in pointing out that gluten affects many parts of the body. Yes, it is known that gluten crosses the blood/brain barrier, and many people suffer neurological damage long before the gastrointestinal symptoms even begin. Dr. Marios Hadjivassiliou has done a lot of research in that area, and he has shown that for some people, GI symptoms never develop, but the neurological symptoms remain. This may be why so many people in the world are depressed, and it is almost certainly the reason why so many members who come here, have depression even before their MC develops.
Also, you are correct about the intestinal damage. People with MC often have the same type of lymphocytic infiltration in the mucosa of their small intestine, as they do in the mucosa of their colon. Furthermore, the same thing can be found in the stomach of those with gastritis symptoms.
Not only that, but the disease known as collagenous sprue, appears to be a combination of celiac sprue, and microscopic colitis, because it results in thickened collagen deposits in the sub-epithelial layers of the lining of the small intestine, just as collagenous colitis causes thickened collagen deposits in the lamina propria of the colon. Consider the research article noted below, where researchers seemed surprised that the gluten-free diet was effective in treating patients with collagenous sprue, (but notice how they stupidly concluded that collagenous sprue is not a side effect of celiac disease, simply because many of the patients did not have the common celiac genes).
Again, they got tripped up by the fact that celiac disease is incorrectly described in the medical literature.
Medscape requires registration, but it is free, and they are a reputable source of medical news articles.
http://www.medscape.com/viewarticle/716491
Note that this sad excuse for scientific research, is another "tainted" product of the Mayo Clinic.
Tex
You are correct in pointing out that gluten affects many parts of the body. Yes, it is known that gluten crosses the blood/brain barrier, and many people suffer neurological damage long before the gastrointestinal symptoms even begin. Dr. Marios Hadjivassiliou has done a lot of research in that area, and he has shown that for some people, GI symptoms never develop, but the neurological symptoms remain. This may be why so many people in the world are depressed, and it is almost certainly the reason why so many members who come here, have depression even before their MC develops.
Also, you are correct about the intestinal damage. People with MC often have the same type of lymphocytic infiltration in the mucosa of their small intestine, as they do in the mucosa of their colon. Furthermore, the same thing can be found in the stomach of those with gastritis symptoms.
Not only that, but the disease known as collagenous sprue, appears to be a combination of celiac sprue, and microscopic colitis, because it results in thickened collagen deposits in the sub-epithelial layers of the lining of the small intestine, just as collagenous colitis causes thickened collagen deposits in the lamina propria of the colon. Consider the research article noted below, where researchers seemed surprised that the gluten-free diet was effective in treating patients with collagenous sprue, (but notice how they stupidly concluded that collagenous sprue is not a side effect of celiac disease, simply because many of the patients did not have the common celiac genes).
Again, they got tripped up by the fact that celiac disease is incorrectly described in the medical literature.It's sad how most medical scientists are unable to think out of the box. They are shackled by their predecessor's mistakes. Despite the fact that about 80% of the patients responded favorably to the GF diet, (and the ones who did not, probably had other additional food itolerances), they concluded:Their report also indicates that out of 22 patients tested, only 17 had HLA alleles DQ2 or DQ8, indicating a genetic predisposition to celiac disease. "Celiac disease can be excluded in the absence of HLA-DQ2/DQ8," the authors point out, adding that in these patients, the etiology of collagenous sprue "remains enigmatic."
How stupid can they get?"Our data suggest that collagenous sprue is heterogeneous and not exclusively a complication of celiac disease."
They add, "Life-long gluten-free diet might be unnecessary in the absence of genetic predisposition to celiac disease, and anti-inflammatory treatment alone may suffice in these patients."
Medscape requires registration, but it is free, and they are a reputable source of medical news articles.
http://www.medscape.com/viewarticle/716491
Note that this sad excuse for scientific research, is another "tainted" product of the Mayo Clinic.
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.