Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Lymphocytic Colitis...not Celiac?


Chelle15

Recommended Posts

Chelle15 Apprentice

Well I have a follow up appt with my doctor in 2 weeks. Based on a biopsy apparently taken from my colon, there is lymphocytosis and that probably means I have lymphocytic Colitis, I guess. Anyone have any experience with this? It says it mainly causes diarhea, but before the last 2 months I have struggled with constipation. I am so confused.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mle-ii Explorer

Yep, I have been diagnosed with Lymphycytic Colitis as well. Did they give you an official diagnosis?

As far as mainly diarrhea, yes, but I too suffer with with constipation at times as well. My constipation is very similar to the symptoms of Proctitis. In the past I had lots of problems with diarrhea as well, but after stumbling upon finding Atkins to limit my symptoms (um no or very little gluten) I found I was gluten sensitive.

If you come to find that you have LC (Microscopic Colitis which also includes CC) there is a great support forum found here:

Open Original Shared Link

One interesting thing is that I have the gene for celiac and gluten sensitivity, though none of my tests have shown Celiac. I've found my symptoms to improve by removing gluten and other food intolerances. Which you would find the majority of folks on the support site to have found as well, gluten seems to be a common problem. Other folks there also suffer with constipation. Oh and I'm a 37 yo male, LC/CC/MC is commonly associated with woman over the age of 60 which really puts me out of the likely candidates for this disease.

I have many theories with the connection, all unproven of course. :)

If you have any questions, please ask away.

Thanks,

Mike

Guest Norah022

I got diagnosed with lymphocytic colitis through a biopsy...ended up the symptoms i was experienced which leadthem to do the biopsy were because of my gallbladder.

mle-ii Explorer
I got diagnosed with lymphocytic colitis through a biopsy...ended up the symptoms i was experienced which leadthem to do the biopsy were because of my gallbladder.

Did they find anything wrong with your gallbladder?

Chelle15 Apprentice

Thank you so much for your reply. I am just so stumped. I have not had a diagnosis, just the possibility based on MILD lymphocytosis of my colon. No sign of Celiac, everything else looked normal. I have an appt. in two weeks. My blood work had high gliadin IgA and IgG, but nothing else was positive, so the GI said he did not think it was celiac, but I still don't understand what these antibodies were doing there. I just want to know something, you know?

You were diagnosed with CC/LC/MC? Did they do anything for it? It just makes me wonder if it is like a precurser for celiac.

My abdomen gets so swollen and my body aches all over. I just wonder if it is all related or not. I can only imagine what the doc will say. I am just so used to hearing, nothing is wrong or its IBS, which I now believe to be a symptom and not a diagnosis.

Again, THANK YOU!

Guest Norah022
Did they find anything wrong with your gallbladder?

OH yeah they took it out..said it was the ugliest gallbladder they had ever seen. It basically stopped functioning.

mle-ii Explorer
Thank you so much for your reply. I am just so stumped. I have not had a diagnosis, just the possibility based on MILD lymphocytosis of my colon. No sign of Celiac, everything else looked normal. I have an appt. in two weeks. My blood work had high gliadin IgA and IgG, but nothing else was positive, so the GI said he did not think it was celiac, but I still don't understand what these antibodies were doing there. I just want to know something, you know?

You were diagnosed with CC/LC/MC? Did they do anything for it? It just makes me wonder if it is like a precurser for celiac.

My abdomen gets so swollen and my body aches all over. I just wonder if it is all related or not. I can only imagine what the doc will say. I am just so used to hearing, nothing is wrong or its IBS, which I now believe to be a symptom and not a diagnosis.

Again, THANK YOU!

Hey no problem. I'm stumped as well. It sounds like you do have LC, but I'm not a Dr (I only play one on TV ;) ). I was told I have a MILD (ha ha) case of LC, and well in comparison to other folks with MC (LC/CC) I do have it mild I suppose. Still affects me negatively. I do find it quite telling that you show IgA and IgG for gliadin (I did as well in stool tests from Enterolab), regardless, I'm betting that elimination of gluten is definetly going to help aleviate some of the symptoms.

Indeed, quite a few of us with MC want to know something. This disease is very rare (according to the Drs) and they don't know the cause or how to treat it. At least to my knowlege. Like I said I have some theroies, but who knows which ones or even if they are true.

Yes, I was diagnosed with Lymphocytic Colitis, which is a version of Microscopic Colitis. CC is another version. Drs have some things to help, but it seems they are just bumping around in the dark. Some folks have been helped by steriods, others by anti inflamitories (not NSAIDs!!! they think this is one of the causes) and still others by diet only some with supplements.

Yes, one of my thoughts is that this could be a precursor to Celiac, could be related some how to Celiac, or even a different version of Celiac. Me having the genes for celaic along with the antibodies in the stool makes me think it's related somehow.

The biggest symptoms for me now and in the past is diarrhea (not so much now), proctitis/tenesmus (bascially the feeling of having to go and not being able to or passing little stool, inflamation, pain), flu like symptoms (achy, brain fog, pain, head ache, nasuous, lack of energy, poor balance), and intense stabbing pain about 3 or so inches just below my belly button (literally feels like a knife stabbing/twisting around in that area).

Here's some info on proctitis/tenesmus:

Open Original Shared Link

Yeah, IBS is the junk drawer of GI diseases, they can't figure it out so they say IBS or it's in your head. :(

Like I said, if you Dr comes back with the diagnosis of LC, please take a look at the support forum I linked earlier. They are a great group of folks all with this disease and they can be a great resource. This forum is a great resource as well since it seems that gluten is an issue for us as well.

HTH,

Mike

OH yeah they took it out..said it was the ugliest gallbladder they had ever seen. It basically stopped functioning.

Ok, silly question, but did they say why it stopped functioning?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,440
    • Most Online (within 30 mins)
      7,748

    Charity12
    Newest Member
    Charity12
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      71.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Thanks for the clarification on the scope. This is what confused me, "gastro doc said from the biopsy there was mild atrophied villi but I know that could be from where the sample was taken and they could be gone not far away." I interpreted that to mean when the scope was done they didn't do a thorough job of checking the area that would be affected by celiac disease and were looking for other things.
    • Tedro
      I already had a scope done and he said there were damaged villi. This follow up is to go over the bloodwork I already know the results to and the gastric emptying study I had done.  I won't say the burgers were not greasy but not bad. It even happens with chicken breast or tenderloin in the air fryer and that's not very fatty at all.
    • trents
      You might be having trouble digesting meat because of the damage to your villi. But what about gallbladder problems? Were those burgers, even the turkey ones, greasy? The odd thing is the "peeing like a racehorse" after consumption. You say you have follow up GI appointment coming up. Please be aware if the GI doc wants to do an upper GI to specifically check for villous atrophy of the small bowel, the hallmark of celiac disease, going on a gluten free diet already may invalidate the results as it allows for healing to occur. 
    • Tedro
      Had noticeable issues for 7 months including 3 trips to the ER for extreme discomfort. Every doc just said I had gastritis, take pepcid. This never changed a thing. Finally talked a doc into a referral to a gastroenterologist who I had to convince to do a scope and bloodwork to test for celiac among other things. It's like nobody believed me when I said I was sick. I got results back saying positive for an autoimmune disease but not which one. At that point I started a gluten-free diet based upon my own findings. The following week I check my insurance site and there's a message that I tested positive for celiacs. Never got a phone call. This was 5 weeks ago. The message said they suggest I maintain my follow up appointment which is may 19. No instructions on what to do, avoid, anything.  I am smart enough to figure this out thankfully.  So now 5 weeks into it I definitely feel an improvement. Been only eating things that say certified gluten free on the packaging.  I was eating a breakfast protein kind bar in the morning but stopped because they aren't certified gluten-free. Also it seemed I would have hard upper gi grumbles when I ate them and I just figured maybe the oats were hard to digest. one of my symptoms was a hard gi grumble that lasted for hours after eating gluten. Eggs don't seem to bother me but I only have 1 or 2. Dairy doesn't seem to bother me. 2 sundays ago I had 2 burgers with no bun. 2 patties on the grill. slice of prepackaged provolone. Half way through the second burger it hit me and I felt horrible. 2 hrs later I am peeing every half hour and up half the night. Thought maybe the small amount of seasoning I used that was gluten-free got cross contamination. This past saturday made a steak. Real butter in a clean pan and throw the steak on. 2 hrs after eating it same thing. Hard grumbles, peeing every half hour for several hours, and plain exhausted. around 6pm yesterday....gluten-free turkey burger in the air fryer. 2 hrs later peeing like a racehorse, hard grumbles in my upper gi. I'm still feeling the effects today. I tried all day to find an allergist but the soonest appointment is in August. I have an appointment with a nutritionist the first week of june.  Thinking back the worst reactions I've had  before diagnosis were general tsos which could have been breading or animal protein I guess. A fried fish sandwich. again could be Bread or protein. 2 burgers while on vacation this past winter. Also since diagnosis I made a porkchop with green beans and sweet potatoes and got the same sick which to me makes me think I'm having more of a reaction to meat or its protein than I am to gluten. gastro doc said from the biopsy there was mild atrophied villi but I know that could be from where the sample was taken and they could be gone not far away.  I'm very frustrated from going gluten free 5 weeks ago and having similar reactions to what should be clean gluten-free food like steak or turkey. I know it takes a long time to heal. I know I have celiacs from the blood work. I just wonder if there is something else going on this whole time. Has anyone had any similar experiences or have any insight? I am looking forward to my gastro appointment next week and have a list of comments and questions but i'm not getting my hopes up. I am by myself and am really struggling with all of this so I'm glad I found this community. I looked through a lot of posts and haven't really seen anything similar. Thank you all in advance.
    • Scott Adams
      You may want to go to a dermatologist to see if it might instead be dermatitis herpetiformis, which is the skin version of celiac disease. Here are some articles on Rosacea and CD:    
×
×
  • Create New...