Hi all! So today has been busy - I've made an appointment with the mayo clinic (on my dr's "advice" which felt like her way of dismissing me). I've spoken with my gi's office asking for a new doctor. Why does she need to be in charge of my transition? I'm just sure she's going to bad mouth me! Plus tried to plead my way onto the head doctor's schedule - he only sees specific cases. PLUS, spent some time with HR working on the accommodation to work from home for a bit. I'm terrified to leave my house these days!
So, I wondered if anyone could offer some insight into what this means? My doctor just isn't great at explaining what's happening. She says my symptoms are not consistent with MC, but then says, I have MC. The results suggest whole exome sequencing, in which she says I can go to the National Institute of Health in D.C., and I ask for a recommendation, she says she has no one. I look the hospital up, and it appears to be a research hospital, not somewhere I can actually go see a doctor on my own...nice! So, yes, I need to figure this out on my own. Would the below mean anything to anyone here? You're all so much more informative than these doctor's I've seen are!
A bit of history for you if not familiar.
I've had my gallbladder removed about 10 years ago. Tend to still have the pain associated with that - CT scan show "normal". I'm noticing a connection with Imodium AD these days - if I take it, I'm likely to have an attack. There are other triggers, but that's the only one I've pinpointed.
About 3 years ago, my dr found low levels of pancreatic elastase - moderate to mile pancreatic insufficiency. He temporarily put me on Creon. I had to change doctors because he refused to perform a colonoscopy or endoscopy, while I knew I needed one. Next GI didn't feel the need to recheck pancreatic enzymes.
Going through test results, I've seen low MCHC, High MPv, High IGG, High IGM, High Histone. Also high Alkaline Phosphatase, high AST and high ALT. What any of this means, no clue!
Now, my latest procedures...
CT
LIVER, BILIARY TRACT: Cholecystectomy has been performed. Mild intra and extrahepatic
biliary ductal prominence, presumably related to cholecystectomy.
Endo/colonoscopy
Comment
The ileal and colonic biopsies show patchy involvement by intraepithelial
lymphocytosis. The villous and crypt architecture is intact, goblet cells are
evident, and lamina propria plasma cells are present. Given the additional
finding of increased intraepithelial lymphocytes in the patient's concurrent
duodenal biopsies (see S18-10008) and her negative celiac serologies, a systemic
immune dysregulation syndrome is a possibility. Clinical correlation is
necessary.
FINAL PATHOLOGIC DIAGNOSIS
Upper GI endoscopic biopsies; duodenum:
- Duodenal mucosa with mild villous blunting and increased intraepithelial
lymphocytes.
See comment
Comment
Given the patient's negative serologies, small bowel bacterial overgrowth and
tropical sprue remain in the differential, among other things. There is no
evidence of active inflammation (peptic duodenitis) or loss of Paneth/goblet
cells or apoptosis (autoimmune enteropathy). Plasma cells are abundant,
excluding common variable immunodeficiency. Olmesartan induced enteropathy is
another diagnostic consideration.
Addendum Comment
Given the presence of intraepithelial lymphocytosis present in the ileal and
colonic mucosa from the colonoscopic biopsies obtained on the same day as these
biopsies (see 18-9997), the findings are most consistent with an
immunodeficiency or immune dysregulation disorder. Genetic testing (whole exome
sequencing) might be helpful in arriving at a specific diagnosis.
If you read this far, THANK YOU!! I have no choice but to try and figure this out on my own with the help of all of you!
Let's play...WHO'S SMARTER THAN MY DOCTOR?? WARNING: LONG
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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mom2zonabby
- Posts: 19
- Joined: Tue Apr 17, 2018 1:03 pm
- Location: Chicago, IL
OK, I'm just an ignorant old country boy, and I certainly don't claim to be a gastroenterology expert, but I happen to know a few things about MC and just enough doctor-speak to get into trouble. Over the last 14 years, I've probably seen more MC pathology reports than she has. And IMO her appraisal of the laboratory markers described in that report suggest that she must be full of you-know-what.
All of the lab markers listed (the duodenal, illeal, and colonic intraepithelial lymphocytes — including the duodenal villous blunting) are consistent with a diagnosis of LC. The ileal and colonic biopsies of MC patients virtually always show patchy involvement by intraepithelial lymphocytosis. And this sometimes extends into the jejunum and the duodenum (sometimes including Marsh 1 stage villous blunting). This is all documented in medical journals and I can cite references if you want. (In fact some of them are listed in my Understanding Microscopic Colitis book). I suspect that she doesn't understand the disease, so she's confused, and she can't see the forest because of all the trees in the way.
Where is the marker that suggests immunodeficiency or immune dysregulation disorder? I seem to be overlooking it/them.
Of course, since I ain't no medical professional, I could be all wet and she really knows what she's talking about, after all.
Tex
All of the lab markers listed (the duodenal, illeal, and colonic intraepithelial lymphocytes — including the duodenal villous blunting) are consistent with a diagnosis of LC. The ileal and colonic biopsies of MC patients virtually always show patchy involvement by intraepithelial lymphocytosis. And this sometimes extends into the jejunum and the duodenum (sometimes including Marsh 1 stage villous blunting). This is all documented in medical journals and I can cite references if you want. (In fact some of them are listed in my Understanding Microscopic Colitis book). I suspect that she doesn't understand the disease, so she's confused, and she can't see the forest because of all the trees in the way.
Where is the marker that suggests immunodeficiency or immune dysregulation disorder? I seem to be overlooking it/them.
Of course, since I ain't no medical professional, I could be all wet and she really knows what she's talking about, after all.
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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mom2zonabby
- Posts: 19
- Joined: Tue Apr 17, 2018 1:03 pm
- Location: Chicago, IL
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
i used the search function to find these for you
https://perskyfarms.com/phpBB2/viewtopi ... ayo+clinic
https://perskyfarms.com/phpBB2/viewtopi ... light=mayo
https://perskyfarms.com/phpBB2/viewtopi ... ayo+clinic
https://perskyfarms.com/phpBB2/viewtopi ... ayo+clinic
https://perskyfarms.com/phpBB2/viewtopi ... ayo+clinic
https://perskyfarms.com/phpBB2/viewtopi ... light=mayo
https://perskyfarms.com/phpBB2/viewtopi ... ayo+clinic
https://perskyfarms.com/phpBB2/viewtopi ... ayo+clinic
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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mom2zonabby
- Posts: 19
- Joined: Tue Apr 17, 2018 1:03 pm
- Location: Chicago, IL
Thanks Gabes. I’m Checking them out. Won’t lie kind of disappointing to read. I guess I was hoping for a miracle. 
Gabes-Apg wrote:i used the search function to find these for you
https://perskyfarms.com/phpBB2/viewtopi ... ayo+clinic
https://perskyfarms.com/phpBB2/viewtopi ... light=mayo
https://perskyfarms.com/phpBB2/viewtopi ... ayo+clinic
https://perskyfarms.com/phpBB2/viewtopi ... ayo+clinic
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mom2zonabby
- Posts: 19
- Joined: Tue Apr 17, 2018 1:03 pm
- Location: Chicago, IL
Thanks Tex. Honestly I trust your opinion much more than hers. She’s dismissive and honestly I believe she’s totally full of you know what. Makes me frustrated when she says she’s not sure or I’m unique. I just want to treat this. Not sure what her pathologists saw to suggest immunodeficiency but they do run in my family so not totally dismissing. We shall see. I ordered a 23andme kit to check it out. Oh and my enterolab kit came in so now I just need the c to pass so I can get a sample. lol
tex wrote:OK, I'm just an ignorant old country boy, and I certainly don't claim to be a gastroenterology expert, but I happen to know a few things about MC and just enough doctor-speak to get into trouble. Over the last 14 years, I've probably seen more MC pathology reports than she has. And IMO her appraisal of the laboratory markers described in that report suggest that she must be full of you-know-what.
All of the lab markers listed (the duodenal, illeal, and colonic intraepithelial lymphocytes — including the duodenal villous blunting) are consistent with a diagnosis of LC. The ileal and colonic biopsies of MC patients virtually always show patchy involvement by intraepithelial lymphocytosis. And this sometimes extends into the jejunum and the duodenum (sometimes including Marsh 1 stage villous blunting). This is all documented in medical journals and I can cite references if you want. (In fact some of them are listed in my Understanding Microscopic Colitis book). I suspect that she doesn't understand the disease, so she's confused, and she can't see the forest because of all the trees in the way.
Where is the marker that suggests immunodeficiency or immune dysregulation disorder? I seem to be overlooking it/them.
Of course, since I ain't no medical professional, I could be all wet and she really knows what she's talking about, after all.
Tex
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
There is no miracle in MC world - if there was then we wouldnt have so many members, and see people struggle to get long term wellness.
What i have observed in my 8 years of being part of this group, Globally - there are only a rare few doctor trained practitioners that have provided good long term advice/support to MC patients.
there is no quick fix - but with the right eating plan, right lifestyle choices, good nutrients you can get good remission and good long term wellness.
What i have observed in my 8 years of being part of this group, Globally - there are only a rare few doctor trained practitioners that have provided good long term advice/support to MC patients.
there is no quick fix - but with the right eating plan, right lifestyle choices, good nutrients you can get good remission and good long term wellness.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
mom2zonabby
Do you have selective IgA deficiency? If you do, the EnteroLab tests may not work. They use ELISA assays so they may show false negative results if your ability to produce IgA antibodies is too low. The celiac screening blood tests that doctors use will also show false negative results. If your doctor tested you for celiac disease (the blood test) then she should have also tested the ability of your immune system to produce IgA antibodies, so you might have that result. If she didn't, shame on her. About 1 in 500 people have selective IgA deficiency. Among celiacs, the odds are closer to 1 in 300.
Tex
Do you have selective IgA deficiency? If you do, the EnteroLab tests may not work. They use ELISA assays so they may show false negative results if your ability to produce IgA antibodies is too low. The celiac screening blood tests that doctors use will also show false negative results. If your doctor tested you for celiac disease (the blood test) then she should have also tested the ability of your immune system to produce IgA antibodies, so you might have that result. If she didn't, shame on her. About 1 in 500 people have selective IgA deficiency. Among celiacs, the odds are closer to 1 in 300.
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.
Please help me, I know you know about this pathology. I have been losing weight since diagnosed with LC.
Colonoscopy:
Ileon: without alterations.
Colon: intra-epithelial lymphocytes >=20
endoscopy:
gastritis with lymphoid clusters.
duodenum: There are no structural alterations of the villi
active chronic peptic duodenitis. Basal lymphoplasmocytosis is not identified
I was on budesodine 9 mg 3 months. I was diagnosed with SIBO as well and wen on antibiotics. They gave me pancreatic enzymes. But abdominal pain started after antibiotics and still losing weight. Vitamin B12 >4000 (NORMAL >700)
after seen 14 GI can helped me with the weight, I have had CAT for pancreatitis and is normal. ELASTAS >500 I am 36 yo I think I will dye. It has been one year since been diagnsed =(
Colonoscopy:
Ileon: without alterations.
Colon: intra-epithelial lymphocytes >=20
endoscopy:
gastritis with lymphoid clusters.
duodenum: There are no structural alterations of the villi
active chronic peptic duodenitis. Basal lymphoplasmocytosis is not identified
I was on budesodine 9 mg 3 months. I was diagnosed with SIBO as well and wen on antibiotics. They gave me pancreatic enzymes. But abdominal pain started after antibiotics and still losing weight. Vitamin B12 >4000 (NORMAL >700)
after seen 14 GI can helped me with the weight, I have had CAT for pancreatitis and is normal. ELASTAS >500 I am 36 yo I think I will dye. It has been one year since been diagnsed =(
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