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Lymphocitic Colitis

bigapplekathleen

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bigapplekathleen Contributor
bigapplekathleen
Posted

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

  • 5 years later...
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ladybadwolf Newbie
ladybadwolf
Posted

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

GF Lover Rising Star
GF Lover
Posted

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

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    • Jason Hi
      Need Advice on Doctors

      By Jason Hi · Posted

      "Commit in a serious way to the gluten-free diet"....I've been Gluten-free since 2008. That's why I was so sick and had to take nausea and bloating medications during the gluten challenge week prior to the upper gastrointestinal endoscopy performed by the gastroenterologist. The "younger" doctor (the internal medicine who did the blood test), said the antibodies should remain in your system and you don't have to eat gluten (i.e., blood test last year). Hence my posting on finding a good doctor.
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    • trents
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      Welcome to the forum, @Jason Hi! First, we need to deal with some squishy terminology. There are two terms which are, unfortunately, used interchangeably and indiscriminately to refer to two different gluten-related disorders. The two terms are "gluten sensitive" and "gluten intolerant". Because these terms are used carelessly we are not certain what you mean when you say your doctor told you that your are likely "gluten sensitive". The actual medical terms for these two gluten disorders are: "celiac disease" and "Non Celiac Gluten Sensitivity" or NCGS for short. The test you had run by the GI doc are intended to check for celiac disease. There is no test for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out.  Because these terms are used by many people interchangeably I'm not sure that your doctor, after running the tests, was intending for you to understand that he believes you have celiac disease or NCGS. So, to clear up the confusion, can you post the results of your blood test, not just the test scores but the reference ranges used by the lab analyzing the blood sample to determine negative/positive or normal/high? The difference between celiac disease and NCGS is that celiac disease damages the lining of the small bowel over time whereas NCGS does not. However, they may share many of the same gastro intestinal symptoms. Both need to be addressed with a gluten free diet but the tax breaks and work place accommodations you speak of would likely only accrue from an official celiac disease diagnosis. So, can you post the blood test results along with the reference ranges and also the endoscopy report. We can help you decipher whether or not the doc was suggesting you may have celiac disease or NCGS if you will do that.
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