Jump to content
  • 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
      131,898
    • Most Online (within 30 mins)
      7,748

    MLucia
    Newest Member
    MLucia
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.