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
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

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

Celiac.com Sponsor (A8-M):


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

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

      Hello, @Jordan Carlson, So glad you're feeling better. Tecta is a proton pump inhibitor. PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12. Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the...
    2. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      15

      Positive biopsy

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1. There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine. In Thiamine deficiency, the body...
    3. Scott Adams
      0

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

    4. trents
      - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      15

      Positive biopsy

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an...
    5. pothosqueen
      - pothosqueen replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      15

      Positive biopsy

      26F!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,012
    • Most Online (within 30 mins)
      7,748
    jsslynjnes25
    Newest Member
    jsslynjnes25
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  One of the symptoms of Thiamine deficiency is difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD symptoms as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      26F!
    • pothosqueen
      Celiac for dummies

      By pothosqueen · Posted

      I was just diagnosed at 26 after accidental finding. Any simple tips for newbies? Things a non celiac would never think of? I already went through my prescriptions and identified some medications that have gluten. Is there a beginners guide? Celiac for dummies?
×
×
  • 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.