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 Celiac.com!
    eNewsletter
    Donate

Lymphocitic Colitis


bigapplekathleen

Recommended Posts

bigapplekathleen Contributor

Hi there,

I was just diagnosed with Lymphocitic Colitis 2 weeks ago. I have been on a strict gluten-free diet since August 2003, when I was diagnosed with Celiac. My biopsy 2 weeks ago shows no current sign of Celiac, so that at least shows I am following the diet!

So how's this for a story? I have been horribly ill for the past year. It all started when I fainted on a plane in April 2008 and hit my head. I had a concussion and a fever. No one knew why I had a fever. My doc suspected Lyme Disease, but the tests were negative over and over. Another doctor finally diagnosed Epstein Barr and low vitamin D in June 2008. In September, the mouth sores started. I had HUNDREDS of them in my mouth. It was disgusting. I got to the point where I could no longer swallow and ended up in the hospital. After tests for coxsackie virus were negative, the doctors were more baffled. Everyone thought the mouth sores could just be from the EBV or Celiac, but they were clustered and came by the dozens and hundreds. They put me on high dose prednisone and the sores stopped. Every time they weaned me off the prednisone, the sores returned, so they kept using the prednisone. They switched to colchicine for a while, but it didn't work. My rheumatologist put me back on the prednisone (low dose this time) in March. Meanwhile, they ran every blood test known to man and biopsied the sores. They were just apthuous ulcer - common canker sores. Blood tests showed lowered immune function and low Vitamin D. I begged my gastro to do an endoscopy and colonoscopy, but he refused, saying I just had one 18 months ago and it was fine. (But I wasn't so sick back then). Then in February, I ate at a restaurnat and became violently ill 2 hours into my meal there. I have never been so sick at a restaurant. The diarrhea that started that night lasted for 9 weeks. It only stopped when I took levaquin for a sinus infection for 5 days. Meanwhile, small bowel series with barium showed nothing. Ultrasound showed nothing. I switched to a new gastro and he suspected auto-immune disease & thought he could find it in a biopsy, but his staff couldn't fit me into the schedule for 2 months. I got sicker and sicker. Finally, I was so sick, they fit me in on an emergency basis. I had a 100 fever when I got there, raging thrush in my mouth, and such severe D that the prep for the colonoscopy seemed dumb. After the procedure, I got worse and worse and ended up in the hospital 3 days later with severe dehydration (fever, tachycardia, blood in stool). The ER put me on Cipro, which seemed to help, and they gave me diflucan for the thrush, and ran tons more tests, including an abdominal cat scan that showed nothing. My biopsy results came back 2 days later and showed Lymphocitic Colitis. The doctor immediately started me on 9mg of Entocort Daily, Pepto Bismol 6 caplets a day, in addition to the prednisone (5mg) and allergy pills that I already take. (To top it off, I asked the current gastro why the other gastro hadn't caught this on the colonscopy 18 months ago and he said the first doc had only taken THREE biopsies. The current doc then said that 12-16 are necessary for proper diagnosis of something like this....meaning the first doc hadn't done his job. The first doc, in fact, believed there was nothing wrong with me and even doubted my Celiac diagnosis, even though I am also a patient at the Celiac Disease Center.)

I cannot even begin to tell you how much better I feel on the Entocort. It took a full week for the D to stop, but now everything is back to normal. However, the gluten-free diet just isn't enough with this disease. Now I seriously have to follow a PALEO diet and also have to overcook everything - even fruits. I cannot tolerate dairy, soy, corn, and obviously, gluten. I seem ok with rice and have been eating a lot of steamed rice just to have SOMETHING to eat that will stay down!

I would love to hear from any other celiacs who are also dealing with LC. It seems like such a rare disease, from what I have read, and it's impossible to even locate an in-person support group for this. I have an appt with my nutritionist in NY City in 2 weeks to make a plan, esp. since I am not really absorbing stuff properly and am very concerned about deficiencies.

Also, when I got sick a year ago, I was preparing for a triathlon, so obviously those plans were put off due to the EBV, which is now gone. I feel better, esp. now that I can eat again, and hope to start training again soon, but this time it will be just for normal workouts with no race plans .

I would love to hear from anyone who has advice or who has been through anything like this.

Thanks so much!

Kat

Link to comment
Share on other sites
  • 5 years later...

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



Celiac.com Sponsor (A8-M):



ladybadwolf Newbie

I have both LC and Celiac. I also appear to share your name! I was very sick as a newborn and could not tolerate breastmilk. As I got a little older (ages 3-5) I would flat out refuse to eat, telling my parents it made my body hurt. They took this as a psychiatric issue and I was treated in that way with little success. The anorexia like symptoms turned into bulimia like symptoms and I got through ages 5-12 by making myself throw up after every meal. Once I was the age of 12 I was close to death from malnutrition. Doctors estimate I lost 4inches off my height and will have fertility issues if that time comes. I found out about the colitis the summer after my senior year of high school and began treatment with uceris - a type of experimental steroid for gastric conditions. Although I felt amazing and alive for the first time in my life the weakness that persists after sterioid use and the effects to your immune system are not worth it. I also tried lialda and Pepto and still take the Pepto as it seems to work best. I found out about the celiac a few months ago and have been eating gluten free ever since. I just wanted to tell you that you are not alone and If you have questions about all of the little issues the disease causes let me know. It effects almost everything. You are not alone.

-Katt

Link to comment
Share on other sites
GF Lover Rising Star

Hi Katt and Welcome to the Forum.

 

The Member you replied to has not been active for 4 years.  You may not get a reply. 

 

Colleen

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Bayb replied to Bayb's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Trying to read my lab results

    2. - Aussienae replied to Aussienae's topic in Coping with Celiac Disease
      65

      Constant low back, abdominal and pelvic pain!

    3. - trents replied to mishyj's topic in Coping with Celiac Disease
      3

      Why?

    4. - trents replied to mishyj's topic in Coping with Celiac Disease
      3

      Why?

    5. - mishyj replied to mishyj's topic in Coping with Celiac Disease
      3

      Why?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,221
    • Most Online (within 30 mins)
      7,748

    lortaine
    Newest Member
    lortaine
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Bayb
      Hi Scott, yes I have had symptoms for years and this is the second GI I have seen and he could not believe I have never been tested. He called later today and I am scheduled for an endoscopy. Is there a way to tell how severe my potential celiac is from the results above? What are the chances I will have the biopsy and come back negative and we have to keep searching for a cause? 
    • Aussienae
      I agree christina, there is definitely many contributing factors! I have the pain today, my pelvis, hips and thighs ache! No idea why. But i have been sitting at work for 3 days so im thinking its my back. This disease is very mysterious (and frustrating) but not always to blame for every pain. 
    • trents
      "her stool study showed she had extreme reactions to everything achievement on it long course of microbials to treat that." The wording of this part of the sentence does not make any sense at all. I don't mean to insult you, but is English your first language? This part of the sentence sounds like it was generated by translation software.
    • trents
      What kind of stool test was done? Can you be more specific? 
    • mishyj
      Perhaps I should also have said that in addition to showing a very high response to gluten, her stool study showed that she had extreme reactions to everything achievement on it long course of microbials to treat that.
×
×
  • Create New...