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Results Are In.....

Canadian Karen

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Canadian Karen Community Regular
Canadian Karen
Posted

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

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Guest gillian502
Guest gillian502
Posted

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
Carriefaith
Posted

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
Canadian Karen
Posted
  • Author

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
celiac3270
Posted

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
Canadian Karen
Posted
  • Author

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

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    • trents
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By trents · Posted

      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
    • HAUS
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By HAUS · Posted

      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free. Unfortunately Sainsbury's have changed the recipe and have made it 'Egg Free' too and it has lost everything that made the original loaf so unique. Now the loaf is unevenly risen with 8 x 8cm slices at best, having lost it's bounce with the texture dense and cake like after toasting resembling nothing like White Bread anymore. Unsure as to why they have had to make it 'Egg Free' as the price is the same at £1.90 a loaf. Anyone else experiencing the same issue with it? - also any recommendations for White Bread that isn't prescription? / Tesco's / Asda's are ok but Sainsbury's was superior.
    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
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      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
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