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Results Are In.....


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#1 Canadian Karen

Canadian Karen

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Posted 07 October 2004 - 09:23 PM

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
  • 0
Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

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#2 Guest_gillian502_*

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Posted 08 October 2004 - 12:17 PM

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
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#3 Carriefaith

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Posted 09 October 2004 - 09:27 AM

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

http://www.finerheal...scopic_Colitis/
http://qurlyjoe.bu.e.../colcolfaq.html

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
  • 0
Carrie Faith

Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004

#4 Canadian Karen

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Posted 09 October 2004 - 08:47 PM

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
  • 0
Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#5 celiac3270

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Posted 10 October 2004 - 01:02 AM

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
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#6 Canadian Karen

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Posted 10 October 2004 - 05:40 PM

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
  • 0
Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown


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