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

New Celiac: Dealing With The Dreaded "d"

Silverfyre

Recommended Posts

Silverfyre Rookie
Silverfyre
Posted

Hello all,

I've been lurking around here for the last week or so and have finally decided to join such a great group of supportive individuals such as yourselves. Allow me to introduce myself. My name is Chris McCoy, I'm a computer technician and a fantasy author (starving of course!) who has recently found out that I have celiac sprue, just like my aunt. She has been dealing with it for almost twenty years and I have been battling my way through the gluten full foods of our society for the last two months. I am extremely honored to have a loving wife who has become gluten free with me, just to prevent me from becoming tempted to eat something that has gluten in it. We are lucky enough to have a local bakery and store that carries plenty of gluten-free goodies and bread that is actually worth eating. So, recovery is very possible...it's just this one problem that is killing me.

Diarrhea. Or as I have heard it called: "D"

The Dreaded "D" has kept me from doing anything for the last two months that requires not being near to a toilet. I've tried Imodium, have been gluten free for two months, and yet, I still have to use the bathroom ten or more times a day. It was suggested that I use psyllium (sp?) husks to help regulate myself but that hasn't helped that much. Any suggestions to help me out? I'd really appreciate it.

Thanks again,

Chris

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

Celiac.com Sponsor (A8-M):


Canadian Karen Community Regular
Canadian Karen
Posted

Hi Chris! Welcome to the board!!!

You have definitely come to the right place for support, advice and encouragement. You indeed are very lucky to have a wife willing to walk step by step with you through this disease.

When it comes to the big D, I am probably the expert on that aspect. Unfortunately, I cannot give you any magic cure to get rid of it. See, after being gluten free for forever and a day and still having permanent uncontrollable diarrhea, they finally did further testing on me and found out that I actually also have collagenous colitis. Collagenous colitis is a form of microscopic colitis that affects approx. 1 in 150,000 people. They have tried everything under the sun on me, two different types of steriod, and still didn't get it under control.

Perhaps after 6 months or so on the gluten-free diet (some people take 6 months to a year, depending on how much damage is done), your D will subside. But if not, maybe get your doctor to do a colonoscopy and take biopies to check for collagenous colitis (only a pathologist can diagnose it under a microscope, it is not visible to the naked eye since it involves changes in the cells in the wall). Google up collagenous colitis and see if it sounds familiar to you....

I find when I am out at the store, inevitably I have to rush to the bathroom. I have developed the "Two Flush" technique. (Sorry if this sounds graphic, but hey, with this forum, get used to it!!!!! :P ) As soon as I sit down, I start to flush because everything is rushing out all at once. If I flush "as I am doing the deed", then it's not around long enough to stink up the joint! Then I do the second flush after I have finished.

Again, welcome to the board and hope we can help you in any way. Just post away! :)

Karen

mandigirl1 Enthusiast
mandigirl1
Posted

Welcome!

Maybe your dreaded D is because you are "cleaning out" your system of a lifetime of eating food with Gluten??? D may take some time to go away. Did you ask your doctor what to do?

Good Luck! :)

Hello all,

I've been lurking around here for the last week or so and have finally decided to join such a great group of supportive individuals such as yourselves.  Allow me to introduce myself.  My name is Chris McCoy, I'm a computer technician and a fantasy author (starving of course!) who has recently found out that I have celiac sprue, just like my aunt.  She has been dealing with it for almost twenty years and I have been battling my way through the gluten full foods of our society for the last two months.  I am extremely honored to have a loving wife who has become gluten free with me, just to prevent me from becoming tempted to eat something that has gluten in it.  We are lucky enough to have a local bakery and store that carries plenty of gluten-free goodies and bread that is actually worth eating.  So, recovery is very possible...it's just this one problem that is killing me.

Diarrhea.  Or as I have heard it called: "D"

The Dreaded "D" has kept me from doing anything for the last two months that requires not being near to a toilet.  I've tried Imodium, have been gluten free for two months, and yet, I still have to use the bathroom ten or more times a day.  It was suggested that I use psyllium (sp?) husks to help regulate myself but that hasn't helped that much.  Any suggestions to help me out?  I'd really appreciate it.

Thanks again,

Chris

<{POST_SNAPBACK}>

Guest nini
Guest nini
Posted

over 2 years into this gluten free diet and I still occasionally run into the dreaded "d"... most often when I have had too much dairy foods... Dairy causes a problem with a lot of celiacs until the intestines start to heal, so I would suggest limiting your dairy intake and see if that helps. I remember eating a ton of cheese and having my mom comment "oh that's gonna plug you up" and it had entirely the opposite effect on me. Instant running to the bathroom... and oh yes, the double flush is a must in public toilets, especially if you don't want to risk OVERFLOW!!!! (BTDT!!!! :blink:

Claire Collaborator
Claire
Posted
Hello all,

I've been lurking around here for the last week or so and have finally decided to join such a great group of supportive individuals such as yourselves.  Allow me to introduce myself.  My name is Chris McCoy, I'm a computer technician and a fantasy author (starving of course!) who has recently found out that I have celiac sprue, just like my aunt.  She has been dealing with it for almost twenty years and I have been battling my way through the gluten full foods of our society for the last two months.  I am extremely honored to have a loving wife who has become gluten free with me, just to prevent me from becoming tempted to eat something that has gluten in it.  We are lucky enough to have a local bakery and store that carries plenty of gluten-free goodies and bread that is actually worth eating.  So, recovery is very possible...it's just this one problem that is killing me.

Diarrhea.  Or as I have heard it called: "D"

The Dreaded "D" has kept me from doing anything for the last two months that requires not being near to a toilet.  I've tried Imodium, have been gluten free for two months, and yet, I still have to use the bathroom ten or more times a day.  It was suggested that I use psyllium (sp?) husks to help regulate myself but that hasn't helped that much.  Any suggestions to help me out?  I'd really appreciate it.

Thanks again,

Chris

<{POST_SNAPBACK}>

Hi Chris, Have you been tested for an immune response to dairy? Lactose intolerance is one thing but there is also an often bigger problem with casein (the milk protein) which has a structure nearly identical to the gluten (wheat protein). Dairy can give you a big 'D' problem big time. So also will other food to which your immune system mounts a response. You need a test that will let you know what other foods may be at fault. York Labs and Immuno Labs (Google to find) both do this testing. Claire

otnemem Rookie
otnemem
Posted

I used to have really bad morning D (until they theorized that it might be celiac). When you take the Imodium might make a difference. I used to wake up and take two Imodium immediately. Then I would wait about two hours before my first small meal of the day. This seemed to regulate me, even though it was a gluten intolerance. You might try that - first thing in the morning, before shower, before ANYTHING...

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. dixonpete
      0

      Hookworm load planner

    2. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Get tested for vitamin deficiencies. Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    3. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    4. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    5. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,089
    • Most Online (within 30 mins)
      7,748
    Clare Durham
    Newest Member
    Clare Durham
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.