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Do You Have This Problem
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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.

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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

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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.

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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.

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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.

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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

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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. ;-) )

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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.

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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.

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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.

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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.

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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.

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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????

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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

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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.

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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.

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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

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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.

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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!

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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

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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