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

Results Are In.....


Canadian Karen

Recommended Posts

Canadian Karen Community Regular

Hi!

Got the results of the colonoscopy. No cancer, thank God!

It did show collagenous colitis though, so he wants to see me on Oct 26th to start a treatment plan. I won't know what that is until I see him..... I haven't gotten the results yet of the bone density scan.....

Huge sigh of relief!!!!

Thanks to all for your prayers and support!!

Karen


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



Celiac.com Sponsor (A8-M):



Guest gillian502

I have a similar disease, Karen. Mine is referred to as "Lymphocytic Colitis" simply because there is no collegean to be found in my biopsies, but otherwise it's the same disease. It's also sometimes called "Microscopic Colitis." Your doctor will probably suggest a drug such as Asacol or Azulfidine, or maybe a steroid if your symptoms are troubling enough. But, at least you have a diagnosis to work with! I've been through the whole colitis thing, so if you have any questions just ask!

Gillian

Carriefaith Enthusiast

Hi Karen

I'm sorry to hear that you have collagenous colitis but glad to hear that you finally know what's wrong and that it's treatable. I was interested in what this was so I was doing some internet research and came across these web site

Open Original Shared Link

Open Original Shared Link

and it seems to me that this type of colitis is related to celiac disease.

As you probably know I too have been struggling. The medication I've been on for the past 3 months is slowly not working anymore, leavng me with the usual symptoms I had before I went on it. I have appointments with both of my doctors so I am going to suggest collagenous/microscopic colitis as a possibility.

Good luck with your treatments

Canadian Karen Community Regular

Hi Gillian and Medaka,

Thanks for the support and Gillian, it is good to know someone else is here who has this - from what I have found so far, apparently it is only 2 out of 100,000 people who get this!!!

I don't know what treatment plan he will start me off on, from what I have read, there are several possibilities.....

Medaka, at your next dr. appt, make sure you suggest testing for this, it just might be the answer for you too!! Now I am off to visit the sites you have discovered!! Thanks!

Have a great day!

Karen

celiac3270 Collaborator

I just read an article from one of the links that Medaka provided. It sounds like there isn't really a cure for it so you could be dealing with the symptoms from it until.......they find a cure. It just seems so unfair that it happens to someone like you, one who is still dealing with symptoms from something else and already has a restrictive diet for life. I just hope that this is the source of your symptoms and that if there's a way to get this under control, you'll be fine.........

Best wishes as always,

celiac3270

Canadian Karen Community Regular

Thanks celiac3270!

Actually, I feel pretty positive about being able to deal with this! One of the articles I read is that the people who do best in controlling collagenous colitis are the ones who keep a postivie attitude.... Blows me away that only 2 out of 100,000 people get this, and I have to be one of them!!!!!

It really does make a lot of sense to me though..... First off, the permanent watery diarrhea regardless of how careful I am, the nocturnal nature of the disease (which explains why I am up during the night for 2 - 3 hours going to the bathroom every 10 - 15 minutes.... That is why a lot of my posts are during the night.....) Then having to wake up, get four kids ready for school/day care and get to work for 8 a.m. just kills me.....

The move is more imminent for us now, and I now know 100% that I will be off on sick leave, which means I will only have 55% of my income, and moving to a cheaper house outside the city will be much more manageable for us.....

How is school going for you? I hope things are going well for you. Although I just read one of your posts that you were up all night with your stomach problems... I pray that they will settle down for you. The good news is that your villi are growing back....

One of the day care supervisors was at my work (I work for a government office that regulates day cares in Ontario), and she saw my "Karen's Gluten Free Cupboard - DO NOT USE", in our kitchen, and she mentioned to me that her husband is celiac and she knows three other celiacs. Made me feel kinda good to talk to someone else who is quite knowledgeable about the disease. Anyway, she makes her own gluten-free bread and she is bringing me in a loaf on Thursday.. Yay!!! She is also quite knowledgeable about a gluten-free diet for autism in children.....

Okay, enough rambling......

Karen

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,207
    • Most Online (within 30 mins)
      7,748

    WAB19
    Newest Member
    WAB19
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.