Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store.

Results Are In.....

6 posts in this topic


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!!



Share this post

Link to post
Share on other sites

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!



Share this post

Link to post
Share on other sites

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

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


Share this post

Link to post
Share on other sites

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!



Share this post

Link to post
Share on other sites

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,



Share this post

Link to post
Share on other sites

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......



Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Forum Statistics

    • Total Topics
    • Total Posts
  • Topics

  • Posts

    • Pins And Needles
      You sure did nail it! I was too worried it was MS or Lupus or Celiac to be able to really give that option a chance. If anything my guess was low b12. The only obvious things in my diet are Vitamin water and protein bars. If you look at food it's in practically everything in pretty high doses. Going gluten-free uncovered this or made it start. MTHFR gene maybe? Magnesium too low? I haven't taken my multi & am looking up everything I'm eating. Still having the twitches but not near as much in my calves and feet. My arch pain is gone & energy is up a bit. Still twitching though and had some arm and shoulder pain overnight. I read it can be 6 months or longer for nerves to heal.
    • How the gluten-free diet can cause new heartburn / GERD: sodium acid pyrophosphate
      I never really had much heartburn before my diagnosis of Celiac and consequent dietary changes. But since then, I have discovered Udis, Van's, Canyon Bakehouse, and many other gluten-free brands. About a year ago I began eating 2 waffles every day, 7 days a week with my breakfast. The waffles I was eating were Nature's Path and Van's, both which use very high amounts of sodium acid pyrophosphate. The waffles are mostly air and carbs. Within a few weeks I began to develop recurrent, very painful heartburn that would popup constantly. My tolerance for acidic foods declined--whereas previously it would take much more acidic foods to cause heartburn, now any amount, no matter how small, would cause heartburn. And it kept getting worse with each month to the point that I began to worry about my health. I developed GERD that wouldn't go away for 24 hours after eating an offending food. The offending foods list kept growing bigger and bigger to the point that almost anything would cause heartburn and some degree of GERD. So I eliminated almost all foods containing sodium acid pyrophosphate and the heartburn and GERD stopped. I can eat tomato-based foods again with either no discomfort or 5% of the discomfort I used to experience, and I can eat foods on the offending food list again with no heartburn at all. Despite searching the internet for hours for an answer to what was causing my heartburn and GERD, I found nothing definitive and had to figure it out on my own. Did you know there is absolutely nothing at all anywhere on the internet connecting sodium acid pyrophosphate with hearburn? To my knowledge this will be the first ever post on the topic on the entire internet. Either that, or both Google and DuckDuckGo are suppressing the information. Also, did you know that sodium acid pyrophosphate is an ingredient found in almost all aluminum-free baking powder? That's what I get for trying to eliminate aluminum! I am making the switch to single-action aluminum-free baking powder soon--single-action doesn't have this ingredient, but it's less convenient to use unfortunately. I'm interested to hear if it causes anyone else heartburn as well. I'm glad to be heartburn-free and comfortable for the first time in a year.
    • Do this, scientists! (experiment to confirm/deny the existence of "leaky gut")
      Leaky gut is a condition that we have little knowledge of.  The symptoms this condition could cause are not agreed upon. Some health practitioners say it could cause "wide range of long term conditions [1], like chronic fatigue syndrome and Multiple Sclerosis. The possible cause list NHS gives is much more accurate: inflammatory bowel diseases – such as Crohn's disease infections of the intestines – such as salmonella, norovirus andgiardiasis  coeliac disease  chemotherapy medicines chronic kidney disease   radiotherapy to the abdomen (tummy) immunosuppressants (medicines that weaken the immune system) HIV/AIDS  cystic fibrosis   type 1 diabetes sepsis complicated surgery As you can see, the list includes a lot gastrointestinal conditions. Gut becomes "leaky", letting too big particles into blood system, and possibly these particles act as poison (because they are not  supposed to be in the blood, thus the possible bad effects). Now, to confirm this disease, I was amazed that this test hadn't been done before:
      Feed the supposed "leaky gut" patients (e.g. celiacs with damaged bowel) with IV fluids. Because these fluids go directly into the blood stream, and the particles are "elemental" (glucose, vitamins, amino acids... all supposed to be in the blood stream anyway), they shouldn't cause any symptoms. If they notice improvement, the problem is in the digestive system (I'm also including stomach). If not, such condition as "leaky gut" doesn't exist. Rather the problem is how the body reacts to the "elemental" particles. E.g the most common explanation would be diabetes (the IV fluids just caused elevated glucose levels), that also should be tested. Also the "candida theory", because its proponents say the candida is in the WHOLE body, including the blood stream. To eliminate this, patients should take anticandida meds, then again go on IV fluids, and if they NOW get better, it was candida. If not candida, and not diabetes, nor allergies, we have a new condition we aren't even aware of (body reacting to elementary particles with no obvious reason). However, if the patients DO get better, the problem IS in the gut. Now, it could be celiac disease, and the improvement could have been due to eliminating gluten from the diet (because IV doesn't contain gluten). The question remains that did the bowel actually leak any particles? (not just gluten causing autoimmune reactions and malnutrition, and explaining all the  300 symptoms).  Or the patients just get better due to NOW acquiring all the necessary nutrients.  To eliminate these possibilities, they should feed the patients with gluten-free food (or even better, with elemental diet, because it could also be lack of digestive enzymes or something else). If they get worse, the problem is STILL in the gut, and thus the "leaky gut" exists. If not, "leaky gut" is probably a non-existent condition.
    • So Hershey's Miniatures Aren't Gluten Free?
      I am really ill just now - 20 minutes after eating 2 Hersheys Milk Chocolate Miniatures - checked on the Hersheys site and the milk choc. minis are NOT included on their list of gluten-free products -and no, I am not sensitive to dairy, so that's not it.  NO MORE for me... it is not the "end to a perfect day" but it isn't fun.
    • Candida test
      I noticed after I posted this that there are some topics about this posted before.  There is a search function above.  But, if anyone has anything new to post that would be appreciated.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
    • Most Online

    Newest Member