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Hi All,
At my appt. with the GI doc last week, she gave me a reprint from a recent journal article titled "Celiac Disease and the Colon". It mentions that there are now well-described associations between celiac disease and both inflammatory bowel disease and MC (interesting that they didn't include MC under the IBD umbrella). Unfortunately, the article does not mention non-celiac gluten sensitivity. It only addresses the 1% of the U.S. population that have the classic celiac genes (HLA DQ2 or HLA DQ8). Of course, this is just the tip of the gluten sensitivity iceberg, as we here well know.
I found this paragraph interesting in the intro:
"Currently, few cases of celiac disease meet the traditional perception of a childhood condition with malabsorption dominating the clinical picture. Despite gluten ingestion since infancy, most patients are diagnosed in adulthood with a signicant minority presenting over 65 years of age. Patients are often overweight and many do not report diarrhea as a symptom; instead, non-specific GI symptoms including dyspepsia and reflux, or non-gut manifestations such as iron-deficiency anemia, chronic fatigue, peripheral neuropathy and ataxia, may dominate the clinical presentation".
This points out something that we have said here before - that in some ways we are lucky that we developed diarrhea and were forced to get a diagnosis. Think of those "silent" cases where damage from gluten may go on forever.
The article further notes that CC was discovered in 1976 and LC in 1989 and that together they account for 10-20% of chronic, no-bloody diarrhea, with an annual incidence comparable to those of Crohn's disease and ulcerative colitis. (Emphasis mine - so where is the money for new MC research???) It says that celiac disease can be found in up to 27% of those with LC and the midteens for CC. Again, they totally miss the gluten sensitivity boat, which would greatly increase these numbers.
You won't believe this statement (discuss among yourselves - LOL):
"Both types of MC are known to resolve spontaneously in a majority of cases".
Say WHAT????? What planet are they from?
When, oh when, will the GI community get up to speed on MC?
Love,
Polly
What GI Docs are Learning (or not)
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
What GI Docs are Learning (or not)
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Polly,
That's very encouraging news, and it's obvious that they are "reluctantly", (perhaps), making progress. It's no wonder that almost everyone else in the world fails to recognize MC as an IBD, when even the GI docs choose to tiptoe around the issue. That's kind of ridiculous, when you think about it - it suggests that they're afraid to even bring it up, out of fear that someone might ask them for details about it.
And, it seems almost comical that they refuse to address the issue of NCGS. Obviously, that's another issue they're afraid to enter into a discussion about.
They're definitely making progress, though, in their recognition of typical celiac "demographics". I'm glad to see that. Officially noting the neurological effects, is also a huge step forward.
That's very interesting that the annual incidence of MC is now recognized to be on an approximate level with the other IBDs. As you point out, that makes it pretty clear that the disease is unfairly slighted by those who fund research projects. I find it appalling that not a single drug is labeled for MC. (Not that I am recommending drugs as the first line of treatment, but that situation makes it very clear that even the drug industry is turning a cold shoulder to MC, and ignoring it. How can that be - the drug industry pushes drugs for virtually EVERYTHING. Why do they ignore MC?
Obviously, someone misinterpreted the data, and presented their mistakes as facts when these reports were written. I have no doubt that here and there, one or two patients probably are able to experience spontaneous remission, (without any intervention), but it is quite clear that that is not the norm, so why do the docs choose to report it that way? I truly believe that in a majority of cases, a GI doc prescribes a treatment, the patient tries it, it doesn't work, they try another, etc., and eventually the patient either moves on to another GI doc, or gives up and seeks help outside the medical profession. The GI doc, of course, records the failure of the patient to return for more help, as a successful resolution of the case.
If the patient follows the same pattern with another GI doc, then that GI doc also mistakenly records that patient's case as "resolved", thus doubling, and probably eventually, tripling, quadrupling, etc., the mistakes in the database.
Many thanks for the update. All in all, it's certainly encouraging that they are making progress, albeit somewhat sporadically.
Love,
Tex
That's very encouraging news, and it's obvious that they are "reluctantly", (perhaps), making progress. It's no wonder that almost everyone else in the world fails to recognize MC as an IBD, when even the GI docs choose to tiptoe around the issue. That's kind of ridiculous, when you think about it - it suggests that they're afraid to even bring it up, out of fear that someone might ask them for details about it.
And, it seems almost comical that they refuse to address the issue of NCGS. Obviously, that's another issue they're afraid to enter into a discussion about.They're definitely making progress, though, in their recognition of typical celiac "demographics". I'm glad to see that. Officially noting the neurological effects, is also a huge step forward.
That's very interesting that the annual incidence of MC is now recognized to be on an approximate level with the other IBDs. As you point out, that makes it pretty clear that the disease is unfairly slighted by those who fund research projects. I find it appalling that not a single drug is labeled for MC. (Not that I am recommending drugs as the first line of treatment, but that situation makes it very clear that even the drug industry is turning a cold shoulder to MC, and ignoring it. How can that be - the drug industry pushes drugs for virtually EVERYTHING. Why do they ignore MC?
I'll bet a GF cookie that quote comes from these old, (obviously corrupt) research reports, written in 1997 and 1998, and based on earlier hospital records:"Both types of MC are known to resolve spontaneously in a majority of cases".
http://www.ncbi.nlm.nih.gov/pubmed/9824342CONCLUSIONS: Lymphocytic colitis is characterised by a benign course with resolution of diarrhoea and normalisation of histology in over 80% of patients within 38 months. Considering the benign course of the disease, the potential benefit of any drug treatment should be carefully weighed against its potential side effects.
http://www.ncbi.nlm.nih.gov/pubmed/8995938CONCLUSIONS: In our cohort of patients, 63% had lasting resolution of symptoms after a mean 3.5 yr follow-up.
Obviously, someone misinterpreted the data, and presented their mistakes as facts when these reports were written. I have no doubt that here and there, one or two patients probably are able to experience spontaneous remission, (without any intervention), but it is quite clear that that is not the norm, so why do the docs choose to report it that way? I truly believe that in a majority of cases, a GI doc prescribes a treatment, the patient tries it, it doesn't work, they try another, etc., and eventually the patient either moves on to another GI doc, or gives up and seeks help outside the medical profession. The GI doc, of course, records the failure of the patient to return for more help, as a successful resolution of the case.
If the patient follows the same pattern with another GI doc, then that GI doc also mistakenly records that patient's case as "resolved", thus doubling, and probably eventually, tripling, quadrupling, etc., the mistakes in the database. Many thanks for the update. All in all, it's certainly encouraging that they are making progress, albeit somewhat sporadically.
Love,
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.
The more I think about it the more my occasional reflux and Ataxia (including vertigo), that lasted for years before MC presented as D, were to do with gluten sensitivity (especially as I have typical celiac genes).
Those early symptoms (now gone since going GF) really affected the course of my life - not in a positive way. Roll on the day when the medical profession pieces all this together!
Best, Ant
Those early symptoms (now gone since going GF) really affected the course of my life - not in a positive way. Roll on the day when the medical profession pieces all this together!
Best, Ant
Both types of MC are known to resolve spontaneously in a majority of cases..
I think I know where that comes from.. when I was first diagnosed (and before entocort was allowed back on the market) my doctor had my case presented at a conference looking for other doctors who were treating CC patients in the hopes of finding something to help me. NOT ONE doctor had a patient return when they were told there was no "cure".
The gastro doctors just arrogantly assume there was a spontaneous solution when the patients don't come back... simple..LOL
grannyh
I think I know where that comes from.. when I was first diagnosed (and before entocort was allowed back on the market) my doctor had my case presented at a conference looking for other doctors who were treating CC patients in the hopes of finding something to help me. NOT ONE doctor had a patient return when they were told there was no "cure".
The gastro doctors just arrogantly assume there was a spontaneous solution when the patients don't come back... simple..LOL
grannyh