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Crohn's Disease Forum » Your Story » Possible Lymphocytic Colitis?


06-17-2012, 08:27 AM   #1
mikeysmom3885
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Join Date: Jun 2012
Location: springfield, Pennsylvania
Possible Lymphocytic Colitis?

Hi Everyone:
I actually work at a gastroenterology practice. I need to have a colonoscopy, just keep putting it off because i work there and am not a fan of everyone seeing my butt LOL. Although we are so used to looking at rear ends, it really doesn't phase us. Anyways, I've had problems my whole life with stomach pains and diarrhea. ALso with dizziness. My bloodwork is always normal, as well as stool cultures. However, my WBCs have always been on the low range of normal, like around 5 or lower. Ever since i got the Epstein barr virus, which i guess reactivates from time to time, i always have enlarged lymph nodes of unknown etiology. Well last year i was having nausea, vomiting, chest pain. I got an EGD which showed lymphocytic duodenitis and my entire duodenum was granular in appearance. No bleeding. Damage at villous tips. So i had prometheus testing for celiac which came back negative. Well, i changed my diet and it has greatly helped, but i still have diarrhea for no apparent reason. We are thinking lymphocytic colitis (microscopic) but the only way to rule that out is through biopsy during colonoscopy. I also wonder if maybe it is crohn's but I wont know for sure without colon. I eat very healthy, make my own breads and goodies. I avoid all gluten and dairy. Can't handle dairy. If i eat something with whey i get severe dizziness and muscle pain and faint. So maybe even it's an allergy but i don't know for sure without testing. I have a hard time digesting fruit. Bananas make me throw up. I like organic applesauce but it does give me mild gassy type pain. I can't eat any seeds, like the other night i ate sunflower seeds and i had pains so bad on right and left side of abdomen and lower back they felt like labor pains. Basically, I as you can't have anything high in fiber. So to sum it up, i am on a low residue, zero dairy, zero gluten, zero additives, zero preservatives diet. It helps so much. When i get these active flare ups, i get diarrhea so bad it;s the consistency of pee and can be up to 8 times a day. On an average day, i get major urgency in the morning, so on a normal day i have a bowel movement twice a day, but it's never solid. ALways loose, except during those active flareups and then it is straight water. Never bloody, though. Which makes me think it is the lymphocytic colitis instead of crohn's or UC. I just keep putting off the inevitable, getting a colon. And i don't like to take medicine, but i kind of think maybe i might have to take a shortime med like Entocort just to heal and then continue with my diet forever. So my basic questions are this: Does anyone here get that major dizziness if you eat whey, where you get the spots in your field of vision, your arms and legs feel heavy, chest tightness, and you can't even concentrate and headache when you eat whey? ALso, do you have Epstein barr titers? Do you get frequent lymphatic swelling for no apparent reason? If you eat something high in fiber do you get the labor type pains in your lower back and sides of abdomen? Do you get nausea when eating fruit but then you feel better once you throw up? Is your CBC and CMP always in range and normal but your WBC is always on the lower side of normal? I am trying to tie this all together. Would love any and all opinions and experiences. Also, how are you with sulfites? Sulfites make me have allergy attacks. Thanks!
06-19-2012, 10:05 AM   #2
David
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Join Date: Feb 2006
Location: Naples, Florida
Hi there and welcome

I'm diagnosed with Lymphocytic Colitis. It sucks big time but if you're going to have an IBD, I'd take it any day over Crohn's or Ulcerative Colitis. But hopefully you have something a little more benign.

Regarding your questions, I don't have any of those but that doesn't mean much. It sounds like you definitely have some food allergies and sensitivities.

Now go get that colonoscopy

Again, welcome to the forum!
06-19-2012, 11:42 AM   #3
zizzle
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Join Date: Jun 2012
Location: Arlington, Virginia
Hi!
I have LC, diagnosed in 2009. I've been gluten-free, dairy-free, and largely soy-free for 2 years, and although the diet worked wonders at first (D improved 80%), I still haven't reached lasting remission. I have not taken any meds for the LC, besides Pepto Bismol tabs during flares. Your symptoms surely sound like LC (MC). Mine is painless, watery or mushy D, now only 1-3 times a day. Never blood. Of course the food intolerances, dehydration and poor absorption cause a host of other symptoms. I am a member of another forum exclusively for MC. There we've all discovered the link to food intolerances and the risks of drug-induced MC from NSAIDS, SSRIs, PPIs and others. Many people with MC also have mast cell degranulation issues, much like Mast Cell Activation Disease. This may explain your apparent reaction to whey. I have mast cell issues with my skin (dermographia, skin rashes, sun sensitivity on my upper body, sweat/exercise-induced rashes, etc). I also have a few immediate reactions to food, many with his histamine levels. You may benefit from a low histamine diet.

Your post interested me because of your mention of Epstein Barr Virus. I had mono as a teen and have been wondering if my LC and skin flares coincide with EBV reactivation. I also have Undifferentiated Connective Tissue Disease (basically random autoimmune symptoms and autoantibodies that don't add up to anything). I'm beginning to think this is all related to EBV. I found a few studies that showed EBV virus present in colonic biopsies of inflammed tissue, both in LC and Crohn's. Maybe your doc could check for that, even though it's only done experimentally (not something a lab could routinely check for). The other thing you should order with your colonic biopsies is a stain for mast cells. Most of us never got it because we never knew about it, and few MCers return for repeat colonoscopies. But this would tell you if you have excess mast cells in your colon causing symptoms.

Here is my most recent thread about the connection to EBV:

perskyfarms.com/phpBB2/viewtopic.php?t=16363
06-20-2012, 05:02 AM   #4
mikeysmom3885
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Join Date: Jun 2012
Location: springfield, Pennsylvania
Hi everyone! well i finally went ahead and said i would schedule a colon for a few weeks from now, but then i wasn't allowed to have off work that day so i still have to schedule one but im thinking it won't be until end of july. So that sucks. Not that I am looking forward to getting one but i just want to know so I can know what the hell to eat LOL. Yes, I have been reading a lot about EBV. Seems to be the cause of all disease. I know when MAST cells are released in allergic reactions they affect the permeability of the blood brain barrier. Then viruses can get through and reach certain parts of the brain. Im sure the same is true with EBV and whichever organ it wants to target. In my case, I guess it targeted the intestines and lymphatic system possibly? It is all very interesting to me. I have to go over my bloodwork, but i think when i had the celiac testing they tested my Cd4/Cd8 cells for mutations and there were none. I think the course goes as follows: Person is born with genetic deficiency of Cd8 and Tcell.

Then, they get the primary EBV infection. Their cd8andt cells are not functioning properly so the EBV takes over and goes haywire. So EBV is taking over and so is a bunch of anti-EBV antibodies. Then they all flow to a target organ, i don't know why they pick one organ over another. So then there is an expansion of auto-reactive Bcells in that targeted organ. So then a bunch of auto-reactive T cells flood the targeted organ. Finally, that whole process makes a bunch of lymphoid follicles to develop in said targeted organ. Most people are infected with EBV during the first few years of life, and it is different from Mono. ALmost everyone has it by the time they are in their 30s. For me, I had mono in 10th grade. Then, after the birth of my son when i was 21, i got very fatigued and had systemic lymphadenopathy for 6 months of unknown etiology, except the EBV titers were very high. I finally got better when i started taking naps every day. Then, a few years later, i was constantly getting strep throat and and always feeling crappy, taking lots of antibiotics. Finally, last year i thought enough is enough im getting those little suckers ripped out.

So i got the tonsillectomy. Best thing i ever did! But the pathology showed chronic lymphoid follicular hyperplasia, which is only found in like 13% of pathology and basically means nothing. But to me, the tonsils are part of lymphatic system, so i think it is probably related to that EBV process as i mentioned above. Then the recent egd showing lymphocytic duodenitis and all that stuff. I had a swollen lymph node in my armpit recently and breast pain so i had a mammo. The node in the armpit went away. I had calcifications of no concern in right breast (which means i better start taking calcium and vitamin d because that happens with bone loss). But the left breast, which i had no problems with, they had to do a spot compression because there was an enlarged lymph node. Anyways, everything was of no concern. And the doc said i don't need another mammo until im 40.

I disagree. Im 34 and i am going to get another in one year to make sure the lymph node didn't enlarge, just to be on the safe side. Call me crazy, but i dont think that is something to mess around with. But im not surprised, because apparently i always have lymph node swellings of unknown causes for some reason that i am unaware of. But with all this research i have been doing, i wonder if it is a combo of the EBV and MAST cell and a food allergy creating havoc in my lymphatic system? thoughts to ponder....
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