Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Do You Have This Problem
0

20 posts in this topic

WAS WONDERING IF OTHERS HAVE THIS PROBLEM. SOUNDS KIND OF BAD BUT HERE GOES. THERE SOME TIMES WHEN I JUST KNOW I HAVE TO HAVE A BOWEL MOVEMENT. IF I AM WASHING DISHES ETC. I CAN FINISH AND JUST GO TO THE BATHROOM. THEN THERE ARE TIMES WHEN I GET HARD CRAMPS AND I KNOW I HAD BETTER HEAD TO THE BATHROOM REAL FAST. THE CRAMPS DO NOT GO AWAY UNTIL MY BOWELS HAVE MOVED. WHEN IT DOES THIS ITS ALMOST LIKE I CAN FEEL IT MOVING DOWN AND COMING OUT. KIND OF A STRANG FEELING. THEN THERE TIMES WHEN IT IS LIKE EVERYTHING OPENS UP AND JUST FALLS OUT ALL AT ONE TIME. THEN I HAVE LOTS OF TIMES WHEN I GET NO WARNING AT ALL AND I JUST GO RIGHT WHERE I SAT OR SIT. SOMETIMES WHEN IT DOES THIS IT A LIQUID AND OTHER TIMES ALMOST LIKE PUDDING. I HAVE HAD THIS HAPPEN MANY TIMES WHEN AWAY FROM HOME. HAD IT HAPPEN IN THE MALL, GROCERY STORE AND AT WORK WHEN I WAS WORKING. IT REALLY MAKES YOU NEVER WANT TO GO ANYWHERE. YOU CAN BE FEELING JUST FINE A MINUTE BEFORE IT HAPPENS AND THEN YOU ARE TRYING TO FIND SOMEPLACE TO HIDE. I ALWAYS CARRY WASH, CLOTH TOWEL, SOAP AND A CHANGE OF CLOTHES IN MY CAR. FOR ME THIS IS ONE OF THE WORSE PARTS OF ALL THIS.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Never actually had an "accident" but I know the feeling, that is what has caused all of my mental issues, I dont leave my house unless I have no other option! I never know when I will need to go, and when you got out with others, and your all in the car on your way somewhere, and your like.....stop the car ASAP... I need to poop! Or your out somewhere and need to go, everyone notices and has to ask questions or make comments. It can really put a damper on your life, I used to be really outgoing and funny, the center of attention, untill I got sick, now I do whatever I can to not get noticed. It sucks!

-Jennifer

0

Share this post


Link to post
Share on other sites

THAT WAS A BIGGEST PART OF MY HAVING TO STOP WORKING. IT IS REALLY BAD WHEN YOU HAVE TO ASK SOMEONE HALF YOUR AGE FOR A BREAK TO GO TO THE BATHROOM ONLY TO BE TOLD YOU WENT TO THE BATHROOM 30 MINUTES AGO, NOW YOU WILL HAVE TO WAIT UNTIL YOUR REGULAR BREAK TIME IN 2 HOURS. I JUST WALKED OUT AT THAT POINT AND NEVER WENT BACK. NOW ABOUT THE ONLY TIMES I LEAVE THE HOUSE IS FOR DOCTOR TRIPS. NO KIND OF LIFE IS IT.

0

Share this post


Link to post
Share on other sites

I used to have this issue a lot before my dx, and now only if I am accidentally glutened.

Are you gluten free now? If so, are you sure you are 100%? Have you researched all the ways gluten can hide in foods and cross contamination? Also, if you are gluten free and still having this issue you may have other food intolerances. Such as dairy or soy or any other food that may set you off. You may need to scale your diet back to a very simple diet for a while to get your system to heal and calm down and not be so reactive... That's what I had to do. Rice, Bananas, plain baked chicken, and applesauce... boring but safe.

I can remember being in restaurants with family and having to RUN to the bathroom... I had an incident at Wal Mart where I "thought" I just had a little gas and NOPE it was MUCH WORSE... The embarrasement alone is enough to keep you from wanting to go anywhere. I haven't had an incident like this in quite a while now... (knock wood) but I would say the first six months on the diet I was still very scared to go anywhere. I didn't have to quit my job, but there were MANY times I had to leave work suddenly in the middle of the day. I just couldn't stay out of the bathroom long enough to do my work and the trip home was torturous but preferable than staying at work. I had every "clean" restroom between work and my house scoped out and I could make it home if I made strategic stops.

0

Share this post


Link to post
Share on other sites

I AM NOT 100% GLUTEN FREE AS OF YET. I AM STILL LEARNING MY WAY. I HAVE DECIDED THAT FOR NOW IT IS ONLY GOING TO BE FRESH VEGS FRUIT AND SOME MEAT OR RICE. I WILL EAT SOMETHING AND THEN I FIND OUT IT HAS HIDDEN STUFF IN IT. IT IS GOING TO TAKE ME AWHILE I AM SURE. PART OF THE PROBLEM I GUESS IS ALSO HAVING TO COOK THE PASTA ETC FOR HUSBAND SON. CAN NOT HAVE A 100% GLUTEN FREE KITCHEN LIKE IT WOULD LOVE TO HAVE. I CAN DOING MORE OF THE FRESH STUFF AND PUTTING IT IN FRONT OF THEM, BUT EVERY DAY OR SO IT IS WHERE IS MY MAC AND CHEESE ETC. COOKIES AND ALL THE JUNK IN THE HOUSE THAT REALLY I KNOW THEY WOULD BE BETTER OFF WITHOUT ALSO EVEN IF THEY DO NOT HAVE A GLUTEN PROBLEM. I AM JUST HOPING THAT THE MORE THEY GET THE FRESH VEGS AND FRUIT ALONG WITH SEEING ME DO SOME BETTER THEY WILL NOT ASK FOR THE OTHER AS MUCH AS IN THE PAST. I WOULD LIKE TO KNOW HOW SOME OF YOU HANDLE THAT WITH YOUR FAMILY WHEN YOU ARE THE ONE THAT DOES THE COOKING. I AM OPEN TO ALL THE HELP I CAN FIND.

0

Share this post


Link to post
Share on other sites




my daughter and I are both gluten free, but my husband is not. Most of the time he cooks for himself. But if I cook a meal I cook foods that are naturally gluten free like meats and veggies with rice or potatoes in many different combinations of flavors and spices... Sometimes I get the Tinkyada rice pasta and make a meal that even my gluten loving husband will eat like Spagetti or Lasagna or Fettucini Alfredo.

The sooner you get yourself completely gluten free, the better you will feel. Check your medicines, your personal care products including makeup...

When I was first dx'ed my husband and daughter were both still eating gluten, so I had to cook for them, (mostly her) but I would cook my food first, making sure my cooking area and supplies were really clean. Got rid of my wood spoons and non stick pans that were scraped and chipping, bought stainless steel pots and pans (much easier to clean) and got a separate collander for draining my gluten free pasta.

Now that my daughter is gluten free with me (she was dx'ed by dietary challenge about four months after I was dx'ed) it's easier, and if my husband wants to eat gluten he has to cook it himself, I refuse to do it. I told him it's unfair and torturous to me. Fortunately he didn't put up too much of a fuss. Every so often he gets weird about it, but thus is life

0

Share this post


Link to post
Share on other sites

If you haven't mentioned this exact symptoms to your doctor, make sure you do. There are other, non-celiac, and organic, causes to this problem. But, of course, staying completely gluten-free is vital.

(PS - can you not post in all caps? it's the equivalent of shouting on the internet, and can be hard to read. thanks. ;-) )

0

Share this post


Link to post
Share on other sites

WAS WONDERING IF OTHERS HAVE THIS PROBLEM. SOUNDS KIND OF BAD BUT HERE GOES. THERE SOME TIMES WHEN I JUST KNOW I HAVE TO HAVE A BOWEL MOVEMENT. IF I AM WASHING DISHES ETC. I CAN FINISH AND JUST GO TO THE BATHROOM. THEN THERE ARE TIMES WHEN I GET HARD CRAMPS AND I KNOW I HAD BETTER HEAD TO THE BATHROOM REAL FAST. THE CRAMPS DO NOT GO AWAY UNTIL MY BOWELS HAVE MOVED. WHEN IT DOES THIS ITS ALMOST LIKE I CAN FEEL IT MOVING DOWN AND COMING OUT. KIND OF A STRANG FEELING. THEN THERE TIMES WHEN IT IS LIKE EVERYTHING OPENS UP AND JUST FALLS OUT ALL AT ONE TIME. THEN I HAVE LOTS OF TIMES WHEN I GET NO WARNING AT ALL AND I JUST GO RIGHT WHERE I SAT OR SIT. SOMETIMES WHEN IT DOES THIS IT A LIQUID AND OTHER TIMES ALMOST LIKE PUDDING. I HAVE HAD THIS HAPPEN MANY TIMES WHEN AWAY FROM HOME. HAD IT HAPPEN IN THE MALL, GROCERY STORE AND AT WORK WHEN I WAS WORKING. IT REALLY MAKES YOU NEVER WANT TO GO ANYWHERE. YOU CAN BE FEELING JUST FINE A MINUTE BEFORE IT HAPPENS AND THEN YOU ARE TRYING TO FIND SOMEPLACE TO HIDE. I ALWAYS CARRY WASH, CLOTH TOWEL, SOAP AND A CHANGE OF CLOTHES IN MY CAR. FOR ME THIS IS ONE OF THE WORSE PARTS OF ALL THIS.

Nothing that you have written about is unusual for many with advanced Celiac Disease. I couldn't even leave the house to go to work on the subway before going to the bathroom 3 to 5 times. It got to the point, a year ago, that I was doing 50 toe-touches, and climing 4 flights of stairs several times in the morning, just to get my intestines evacuated. The phychological effect of this alone was enough to make me want to quit, but I didn't. If I had a bad "accident", I would just come home and clean myself up. I've had many jobs that limited the amount of time on bathroom breaks, and even jobs working outside with no bathrooms available at all. I was very fortunate that the digestive problems were not as bad then - but I was extremely sick in other ways, such as vitamin deficiencies, anemia, tooth loss, and brain fog.

Chances are you'll get better, if you stick with the gluten-free diet - I did, and in less than a year my life has turned around.

If you eat dairy, remember to take the appropriate pills to digest it properly, also. I missed a few dairy pills earlier this week, and suffered for it - but I was better in a day or two.

0

Share this post


Link to post
Share on other sites

First of all let me say that I did not mean to be shouting at anyone. I have always used all caps because I have bad eyes and it is easier for me to see. I will no longer use them in here. So if i start making mistakes in typing please over look them. I have tried making the fonts larger in here but can not get it to work for some reason. If someone can tell me how to do that it would help me alot.

My husband would go hungery before he cooked anything. He just does not know how. I did get new pots and pans, stainless steel also.

0

Share this post


Link to post
Share on other sites
First of all let me say that I did not mean to be shouting at anyone. I have always used all caps because I have bad eyes and it is easier for me to see. I will no longer use them in here. So if i start making mistakes in typing please over look them. I have tried making the fonts larger in here but can not get it to work for some reason. If someone can tell me how to do that it would help me alot.

My husband would go hungery before he cooked anything. He just does not know how. I did get new pots and pans, stainless steel also.

no worries, we know you weren't meaning to yell. :-)

if you're using Mozilla or Internet Explorer, and you go to the View menu, and select Font Size, and then select Largest, you can get a larger font. Additionally, you can go to the Tools menu, select Internet Options, select the Accessibility button in the lower right corner, and click the top three check boxes. (If that's not enough, you should change the resolution on your monitor to something lower, and enable large fonts.)

as for your husband, there's a lot of naturally gluten-free stuff that you can cook so that you don't have to worry about contamination. he'll still get fabulous food.

0

Share this post


Link to post
Share on other sites

Before my diagnosis that was my life for 30 years and each year was worse than the one before. If I ate anything with gluten in it I had to be at the bathroom within ten minutes or else. If I at any after 12 noon then it was a big problem. Big time pains and sweating were the norm. Now since being gluten-free I only get that when I am glutened by accident.

0

Share this post


Link to post
Share on other sites

Hi, I just wanted to say that even though I dont have any "accidents" (the worst I get is some mild cramping, bloating and loose stools) after reading your post I felt really bad for you. :(

I have alot of symptoms...just not that one. I sometimes get down and complain and occasionally I've said "I wish I just had "D" or stomach probems like everyone else!" No, I am not beyond throwing temper tantrums...even at 34. :ph34r:

I usually get a lecture about not knowing how terrible it would be to constantly worry about finding a bathroom or having an accident or terrible cramps where you cant even move. I am told that someone experiencing these symptoms would probably gladly switch with me.

Anyways, your post has enlightened me and I will not feel sorry for myself in the future because its not easy for any of us. Thank you for making me see that.

I hope you begin to feel better very soon.

0

Share this post


Link to post
Share on other sites

I did what you said and it does make some things larger on here but not what I am typing. Is there a way to make it larger in here????

0

Share this post


Link to post
Share on other sites

Hi Mary.

Just wanted to mention to you that you are living my life! You described exactly what I live with every day. I have been gluten-free for over 3 yrs now with no improvement. Finally, I was referred to a professor at St. Mike's hospital who specializes in celiac. He discovered through colonoscopy that I also have a severe case of collagenous colitis. Maybe you should check into it at your next dr. appt.

Here is a link:

http://www.medicinenet.com/lymphocytic_colitis/page2.htm

Karen

0

Share this post


Link to post
Share on other sites

I have had many colonoscopy over the years. I have been told I have spastic colon, coliits, ibs, and possible crohns. I have been in the hospital twice because of heavy rectal bleeding. This has been going on for 20 years with me and bowel problems. Just in the last couple months did the celiac come into play after having an endoscopy for the first time. Was told they think I have a couple different problems going on at one time. All I know is that since starting to get off of the gluten I am feeling some better in gerneral which I am thankful for. Sometimes I do not think they really know just what is wrong with me. I get really scared about it though since my mother died of intestinal cancer. Can not help but wonder if they are missing something. Thanks for the web site, I took a fast look at it but am going back and read everything.

0

Share this post


Link to post
Share on other sites
I did what you said and it does make some things larger on here but not what I am typing. Is there a way to make it larger in here????

I often type my postings in WORD, or transfer them from here to there, to do a spell check, etc. You can use any size font, even very large ones (16 and up) in WORD, and the size will be reduced when you transfer it to the message board.

0

Share this post


Link to post
Share on other sites

Your post about not being 100% gluten-free confused me, so I wasn't sure how to help you out. Are you still eating gluten-containing foods (like mac&cheese, cookies, etc.?) It sounded like you sometimes eat this stuff when your family asks for it. But I wasn't sure.

Thanks

0

Share this post


Link to post
Share on other sites

To tell the truth there has been a few times when fixing mac & cheese for the family I have taken a small taste. I keep forgetting to use a different spoon when I stir things while cooking. Last night I decided to fix a roast with fresh potatoes and carrots. Thought that was a safe thing. The problem came about because I like gravey. In stead of making from dripping and flour I thought I will just put some beef broth in with the roast and them thicken with corn starch. Stomach started brothing me so I start wondering why. I knew it could not be the roast, potatoes or carrots. Went and looked again and the beef broth has gluten in it. So can you tell me what you do if you want gravey in something.

0

Share this post


Link to post
Share on other sites

For the best kind of support...it is a good idea to admit up front that you ate something with gluten in it. Then we know how to respond to your questions. And be up front if you are doing things like using the same spoon to stir your pasta pot and your gluten-free dinner. Then we can give you tips on how to prevent this.

There are lots of great recipes on this board, plus lists of alternative ingredients. If you can't find what you are looking for, then just post a question and ask...like, go to the food section and just ask: what gluten-free product can I use to thicken my gravies? Or, can anyone recommend a good canned broth that is gluten-free? You'll get all sorts of great answers.

Hope this helps!

0

Share this post


Link to post
Share on other sites

Mary, you will find broth (vegetable or herbal based broth) in the health food store. But even they can contain gluten, so you absolutely must, at all times, read the labels! When I went I found ONE out of four had no gluten (and now I can't even use that one any more, because of salicylates).

I never go to the grocery store without reading glasses any more (I got myself one of those pairs in a little case for that purpose), I carry them in my coat pocket. Of course, I spend a lot of time shopping, which can obviously be a problem for you, too. Fortunately my grocery store has a customer bathroom, you may have to find one that does (or where they'll allow you to use theirs if necessary, you'd have to explain your problem to the manager).

I hope you figure it out!

Ursula

0

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
0

  • Forum Statistics

    • Total Topics
      104,655
    • Total Posts
      921,622
  • Topics

  • Posts

    • Below is copied & pasted from this thread:   My celiac doctor is Dr. Syed Jafri, in Webster, TX (just south of Houston -- basically the Clear Lake City area), saved my LIFE.  I would recommend him to the whole, entire world.  I was desperately ill, and am still struggling, and he's a wonderful, sweet man who listens and is very proactive in helping you solve whatever problems you're having.  I wish all doctors were like him.  I have to fight and struggle with too many doctors to just listen to me and what I live with, day in and day out.  He's not like that.  Good luck to you.     There are recommendations on this thread too:  
    • I never worried about cross contamination because i was originally told i was just intolerant. after going gluten free i felt so much better up until this last march. dairy and fructose have been giving me problems but both lactose and fructose test came back negative.  this is what my gi doctor emailed me today 
    • Any place you know of to find more info? Seems like I am still in so much pain/bloat, I am not even sure if I would pick the right 5 foods!
    • Don't freak out worrying about other maladies yet. You would be absolutely amazed at the things that can/will resolve on the gluten free diet. Some take longer than others -- neurological seem to take the longest for most people but really, I guarantee, there will be things you had no idea or expectation of resolving will. There were tons for me and then there were things I sort of "woke up one day" & said, "hey, that's gone and that & that & that". Other, larger things had taken my attention so I hadn't paid attention to the smaller things until...... On the other hand, not everything is related to celiac but I bet you wouldn't find a handful of celiacs who didn't say something very similar to what I said above. Yes, thyroid problems are common with celiac but I'll also tell you there are/have been people on here who were hypothyroid before dx but after being gluten-free for a while they actually went back to normal thyroid numbers. My husband is one (yes, we both are celiac - it happens). He was on synthroid for 20 years or more. Guess what? He's not on it anymore. We've had his thyroid panel done several times since about a year gluten-free & he is no longer hypothyroid. 
    • Yes please, that'd be awesome Having a fun time trying to reply on my phone due to broken screen but will be back on tomorrow after results of doctor appointment to get to the bottom of why they've given me seemingly wrong advice re: next steps. Yup I'll admit to pity, anger, frustration and outright fear, been through the mill of emotions in this first week that's for sure. One thing before I go for that; back when I was self-diagnosing I wanted a full thyroid panel (T3, T4 etc.) and also ESR & CRP checks for vasculitis and similar maladies. Now it seems from my reading they can often follow celiac so my worry level of those has gone up a notch, more blood tests ahoy it seems? Main reason for worrying about those is the nearly constant tight / tender head I have at the moment. Top and sides of scalp. Could be the stress tensing the shoulders and occipital muscles at back of head but after the celiac diagnosis being missed I'm fearful of anything else being missed. Did anyone else have this tight head feeling at the start? Feels like the skin is being pulled inwards, sometimes goes down for a few minutes here and there and gets worse when sitting I think. I see the term "brain fog" a lot but luckily don't seem to have too much of that at present, this is more a physical sensation.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,656
    • Most Online
      3,093

    Newest Member
    bentcreekmom
    Joined