Hello everyone, I'm still feeling bad and my GI doctor wanted to do another colonoscopy and upper GI Scope since I have him stumped and he wasn't the one to do the previous scopes. He said everything looked normal but took a lot of biopsies.
He says the colitis is cleared up from the Entocort that I took. (Once you have been diagnosed with MC can it completely go away?) But he says that biopsies came back abnormal of the colon showing that I have nodular lymphoid hyperplasia which may not be a significant problem but requires further testing. I need to do another blood test and stool tests.
I googled nodular lymphoid hyperplasia but didn't quite understand it.
Could this be causing my D, abdominal pain, weightloss, no appetite, and nausea?
If anyone understands this better than me please fill me in.
GLJ
Help! What is nodular lymphoid hyperplasia?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi,
This topic has come up before, because we have another member who was diagnosed with nodular lymphoid hyperplasia, (in Spain). She was/is a young adult. I have no idea of your age category, but nodular lymphoid hyperplasia is somewhat common in children, and quite rare in adults. First off, I'm puzzled by this statement:
"Everything" does not look normal, if nodular lymphoid hyperplasia is present.
This is how nodular lymphoid hyperplasia usually appears through a colonoscope:
I'll be a monkey's uncle if that is the way a normal colon appears through a scope.
This is how a normal colon looks, when viewed through a colonoscope:
Do you have a copy of the pathology report on the endoscopy exam? IOW, I'm wondering if your markers were found in your colon, or in your terminal ileum - it is even rarer for it to be present in the colon. Have you ever been tested for Selective IgA deficiency? Here is a previous thread where the implications of nodular lymphoid hyperplasia were discussed:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=9880
Here's an abstract of a very interesting case:
http://www.sciencedirect.com/science?_o ... 48d369cbb3
In general, this condition is usually benign, but not much is known about it.
Tex
This topic has come up before, because we have another member who was diagnosed with nodular lymphoid hyperplasia, (in Spain). She was/is a young adult. I have no idea of your age category, but nodular lymphoid hyperplasia is somewhat common in children, and quite rare in adults. First off, I'm puzzled by this statement:
.He said everything looked normal but took a lot of biopsies
"Everything" does not look normal, if nodular lymphoid hyperplasia is present.
This is how nodular lymphoid hyperplasia usually appears through a colonoscope:
I'll be a monkey's uncle if that is the way a normal colon appears through a scope.
This is how a normal colon looks, when viewed through a colonoscope:
Do you have a copy of the pathology report on the endoscopy exam? IOW, I'm wondering if your markers were found in your colon, or in your terminal ileum - it is even rarer for it to be present in the colon. Have you ever been tested for Selective IgA deficiency? Here is a previous thread where the implications of nodular lymphoid hyperplasia were discussed:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=9880
Here's an abstract of a very interesting case:
http://www.sciencedirect.com/science?_o ... 48d369cbb3
In general, this condition is usually benign, but not much is known about it.
Maybe, if it's widespread in your small intestine, but if it's restricted to your colon, then those symptoms are most likely due to MC, (assuming that you have a previous diagnosis of MC).GLJ wrote:Could this be causing my D, abdominal pain, weightloss, no appetite, and nausea?
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.
Tex, After my first colonoscopy I was diagnosed with MC or LC after biopsies were taken and examined. Then I took Entocort for about 10 weeks. Then I did a second colonoscopy and the GI doctor says the Colitis is healed up but the biopsies from my colon still show abnormalities. They show that I have nodular lymphoid hyperplasia. I'm still having all of my symptoms that you think were most likely caused from the MC but he says it is cleared up. I'm confused as ever and wondering if I'll ever get better. I'm continuing a GF and DF diet for now. You asked if I've ever been checked for IGA defiency. I don't think I have but I think that is what they want to check with the blood work.
GLJ
GLJ
If the histology of the mucosa of your colon actually showed no evidence of MC after only 10 weeks of treatment, that would be the first time in history, for MC damage to heal so quickly. It normally takes years for all of the evidence of MC to be completely erased from the mucosal cells of the colon, (not just a few weeks). I suspect your GI doc is taking verbal liberties with his description of your biopsy results, maybe because he thinks that you wouldn't understand, if he gave you an accurate description. 
If I were in your shoes, I wouldn't worry about the nodular lymphoid hyperplasia, unless further testing shows a reason to be concerned. The normal course of nodular lymphoid hyperplasia, is benign, and there is no treatment defined for it, anyway. The chances are, after your MC actually goes into remission, (I disagree with your GI doc that it could have already resolved so quickly), the nodular lymphoid hyperplasia will probably slowly disappear, also. The nodules contain concentrations of lymphocytes, so I don't see how he could possibly say that your LC has healed. LC is defined by excess numbers of lymphocytes in the mucosa of the colon, and excess numbers of lymphocytes are also present with nodular lymphoid hyperplasia. The main difference is the nodular appearance of the surface of the interior of the colon, when nodular lymphoid hyperplasia is present.
Your GI doc doesn't seem to understand MC. The gut doesn't heal from MC in just a few weeks. If you stick with the diet, you will eventually see improvement, and your symptoms will slowly resolve. Your doc never should have advised you to discontinue taking the Entocort, that treatment period was way too short. It you had continued to take it, you wouldn't be having any symptoms, now.
Tex
If I were in your shoes, I wouldn't worry about the nodular lymphoid hyperplasia, unless further testing shows a reason to be concerned. The normal course of nodular lymphoid hyperplasia, is benign, and there is no treatment defined for it, anyway. The chances are, after your MC actually goes into remission, (I disagree with your GI doc that it could have already resolved so quickly), the nodular lymphoid hyperplasia will probably slowly disappear, also. The nodules contain concentrations of lymphocytes, so I don't see how he could possibly say that your LC has healed. LC is defined by excess numbers of lymphocytes in the mucosa of the colon, and excess numbers of lymphocytes are also present with nodular lymphoid hyperplasia. The main difference is the nodular appearance of the surface of the interior of the colon, when nodular lymphoid hyperplasia is present.
Your GI doc doesn't seem to understand MC. The gut doesn't heal from MC in just a few weeks. If you stick with the diet, you will eventually see improvement, and your symptoms will slowly resolve. Your doc never should have advised you to discontinue taking the Entocort, that treatment period was way too short. It you had continued to take it, you wouldn't be having any symptoms, now.
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.
My GI doc said the there is NO CURE for my collagenous colitis so am stunned that yours said your MC is cured in such a short time.
After going to many many GI docs I started asking any new ones how many patients they had with collagenous colitis. My current doc has about 10 and as far as I know they are all in remission with either entocort or more serious drugs. Not one of the other doctors I went to before my current one (have had him about 4 years) had a collagenous colitis patient on an on going basis. Most claimed my diagnosis was not correct and wanted to do more scopes and tests.
grannyh
After going to many many GI docs I started asking any new ones how many patients they had with collagenous colitis. My current doc has about 10 and as far as I know they are all in remission with either entocort or more serious drugs. Not one of the other doctors I went to before my current one (have had him about 4 years) had a collagenous colitis patient on an on going basis. Most claimed my diagnosis was not correct and wanted to do more scopes and tests.
grannyh
GrannyH,
That's the impression that I get when I read GLJ's posts, (but I didn't want to come right out and say it).
Since you said it, though, I might as well say that I agree with you. IOW, I suspect that he is using her as a guinea pig, to learn on. 
I hope I'm wrong, but the evidence certainly suggests that scenario.
Tex
That's the impression that I get when I read GLJ's posts, (but I didn't want to come right out and say it).
Since you said it, though, I might as well say that I agree with you. IOW, I suspect that he is using her as a guinea pig, to learn on. I hope I'm wrong, but the evidence certainly suggests that scenario.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.
Perhaps I should have been less blunt:)
Anyone who has been on this site any length of time knows there are very few doctors who know anything about microscopic colitis. There are plenty of docs who will test you til the moon turns into cheese though:)
I hate to think of the insurance money that was paid out on my behalf to doctors who had no clue what they were doing. Not to mention the berating I took both from doctors and hospital staff who thought I brought all of my problems on myself.. either because I wasn't eating right.. or they wanted to tell my I had psychological problems.
Don't know how many docs told me to increase my fiber in my diet! Thanks to this site and increasing the fiber.. I found out increased fiber was my enemy. DUH.. when my body told me D got worse with fiber I started paying more attention to MY BODY and my reactions to things rather than blindly following the advice of someone with a medical degree.
My current GI doc did go look at the slides from the biopsies taken during my colonoscopy.. NOT one other doctor since has been willing to do that. I did doctor shop after finding my current GI doc since I wanted one closer to home. It is a two hour drive each way to my current doc... add in waiting room time.. you waste a whole day.
I am not saying that everyone has to get their life back like I did... with entocort. What I am saying is that everyone has to be their own advocate. If you and your doctor are not open minded about various approaches to getting your life back.. the chances of success are pretty slim.
The first time I went to my current GI doc entocort was off the market. I wanted to try diet but wanted to know if I had any fall back options. With reluctance.. and passage of time... I agreed to try asacol and it made me sicker than a dog. That made me even more reluctant to try entocort.. The GI doc never forced me to come to any choices that he suggested. He waited for me to be willing to try his suggestions.
I no longer have much faith in doctors. Thank heavens I have a family doctor, ENT doc, dentist and a GI doc that I trust. All of them let me ask questions and all of them take my gastric problems into consideration if medication is needed.
grannyh
Anyone who has been on this site any length of time knows there are very few doctors who know anything about microscopic colitis. There are plenty of docs who will test you til the moon turns into cheese though:)
I hate to think of the insurance money that was paid out on my behalf to doctors who had no clue what they were doing. Not to mention the berating I took both from doctors and hospital staff who thought I brought all of my problems on myself.. either because I wasn't eating right.. or they wanted to tell my I had psychological problems.
Don't know how many docs told me to increase my fiber in my diet! Thanks to this site and increasing the fiber.. I found out increased fiber was my enemy. DUH.. when my body told me D got worse with fiber I started paying more attention to MY BODY and my reactions to things rather than blindly following the advice of someone with a medical degree.
My current GI doc did go look at the slides from the biopsies taken during my colonoscopy.. NOT one other doctor since has been willing to do that. I did doctor shop after finding my current GI doc since I wanted one closer to home. It is a two hour drive each way to my current doc... add in waiting room time.. you waste a whole day.
I am not saying that everyone has to get their life back like I did... with entocort. What I am saying is that everyone has to be their own advocate. If you and your doctor are not open minded about various approaches to getting your life back.. the chances of success are pretty slim.
The first time I went to my current GI doc entocort was off the market. I wanted to try diet but wanted to know if I had any fall back options. With reluctance.. and passage of time... I agreed to try asacol and it made me sicker than a dog. That made me even more reluctant to try entocort.. The GI doc never forced me to come to any choices that he suggested. He waited for me to be willing to try his suggestions.
I no longer have much faith in doctors. Thank heavens I have a family doctor, ENT doc, dentist and a GI doc that I trust. All of them let me ask questions and all of them take my gastric problems into consideration if medication is needed.
grannyh
Dear GLJ
Sorry to hear you are still not feeling good. Sometimes it is so difficult to know what to do. Thank goodness for Tex and his knowledge. And Grannyh is so right, we need the doctors but we need to find the right ones. That is difficult to do. We often seems not just to have to deal with the disease, but also with the medical profession too. In many ways PP is our best "health service".
Love, Ant
Sorry to hear you are still not feeling good. Sometimes it is so difficult to know what to do. Thank goodness for Tex and his knowledge. And Grannyh is so right, we need the doctors but we need to find the right ones. That is difficult to do. We often seems not just to have to deal with the disease, but also with the medical profession too. In many ways PP is our best "health service".
Love, Ant
Hi Wayne,
Yes, focal lymphoid hyperplasia refers to localized, (isolated), lesions, which typically have a small concentrated area of lymphocytes at the center, (a focal point), and progressively diminishing numbers of lymphocytes, distal from the center, (IOW, lymphocyte density tapers off radially from the center). It occurs most commonly in the gastrointestinal tract in association with chronic peptic ulcer disease of the stomach.
Nodular lymphoid hyperplasia, on the other hand, is typically diffuse, (widespread), and it's easily distinguished by the presence of numerous visible mucosal nodules measuring up to half a centimeter in diameter. It often covers the entire luminal, (interior), surface of the small intestine, and/or the colon.
Tex
Yes, focal lymphoid hyperplasia refers to localized, (isolated), lesions, which typically have a small concentrated area of lymphocytes at the center, (a focal point), and progressively diminishing numbers of lymphocytes, distal from the center, (IOW, lymphocyte density tapers off radially from the center). It occurs most commonly in the gastrointestinal tract in association with chronic peptic ulcer disease of the stomach.
Nodular lymphoid hyperplasia, on the other hand, is typically diffuse, (widespread), and it's easily distinguished by the presence of numerous visible mucosal nodules measuring up to half a centimeter in diameter. It often covers the entire luminal, (interior), surface of the small intestine, and/or the colon.
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.
Hi GLJ,
I was diagnosed with nodular lymphoid hyperplasia (Herman's syndrome) around 3 years ago, I was suffering very badly from diarrhoea, stomach cramps and a general feeling of being run down and lethargic, my doctor's also didn't know what the problem was and I was sent for various tests which showed that I had Microscopic Colitis and not much else.
I was then sent for colonoscopy and a endoscopy which showed a few polyps, this was when they decided to investigate further and I was then sent for a capsule endoscopy which showed the full extent of the problem, first off the doctors wasn't very sure what to say and wasn't sure what the conditon was and at first thought my stomach was lined with thousands upon thousands of polyps which was very worrying.
I was then very lucky that a doctor in Harley Street saw these images from my stomach and right away diagnosed Hermans Syndrome, If this doctor hadn't of seen these pictures my problems could have carried on for so much longer as this is a very rare condition.
Once diagnosed I was then sent for iga, igl and igm test which showed I was deficit in both iga and Igm, I was also sent for allergy testing and this showed that I was really allegic to anything and the symtoms continued, this was when I decided that I would cut out wheat from my diet as my mum is coeliac, this proved to be the best thing I have done, the cramps, diarrhoea have gone and I feel so much better.
I still have to have a capsule endoscopy every 3 years to monitor it but fingers crossed all is good.
If you have any questions that I can help you with please don't hesitate to get in touch with me.
Best regards
Daniel
I was diagnosed with nodular lymphoid hyperplasia (Herman's syndrome) around 3 years ago, I was suffering very badly from diarrhoea, stomach cramps and a general feeling of being run down and lethargic, my doctor's also didn't know what the problem was and I was sent for various tests which showed that I had Microscopic Colitis and not much else.
I was then sent for colonoscopy and a endoscopy which showed a few polyps, this was when they decided to investigate further and I was then sent for a capsule endoscopy which showed the full extent of the problem, first off the doctors wasn't very sure what to say and wasn't sure what the conditon was and at first thought my stomach was lined with thousands upon thousands of polyps which was very worrying.
I was then very lucky that a doctor in Harley Street saw these images from my stomach and right away diagnosed Hermans Syndrome, If this doctor hadn't of seen these pictures my problems could have carried on for so much longer as this is a very rare condition.
Once diagnosed I was then sent for iga, igl and igm test which showed I was deficit in both iga and Igm, I was also sent for allergy testing and this showed that I was really allegic to anything and the symtoms continued, this was when I decided that I would cut out wheat from my diet as my mum is coeliac, this proved to be the best thing I have done, the cramps, diarrhoea have gone and I feel so much better.
I still have to have a capsule endoscopy every 3 years to monitor it but fingers crossed all is good.
If you have any questions that I can help you with please don't hesitate to get in touch with me.
Best regards
Daniel
Daniel,
Thank you for that very helpful post, and welcome to the board.
I hope your condition continues to improve. It sounds as though you have it sorted.
Tex (Wayne)
Thank you for that very helpful post, and welcome to the board.
I hope your condition continues to improve. It sounds as though you have it sorted.
Tex (Wayne)
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.