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lisaemu

By lisaemu
in Coping with Celiac Disease

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lisaemu Contributor
lisaemu
Posted

Well anyone can call me a dumba$$...I officially learned soemthing this week tho! I had been gluten free for 2 months, but struggle with it mentally (since im not officially diagnosed) i was just startng to feel better (i actually had a few days where my stomache didnt hurt! amazing!) anyways..i went on vacation this weekend with my mom, got stuck at a buffet where EVERYTHING was made with wheat(gotta love dollywood..) so i fugred i would "test" myself..and besides my stomache being bloated, i didnt hurt THAT bad. I was so excited..so i ordered sandwiches and had rolls with dinner. then i came back home and got some bagels and cereal..i was so excited ot ahve rbead again! Well..that only lasted about a day and a half! I was in so much pain it was awful. Today I couldnt even wlak, I thought I was going to throw up. My stomach hurt so bad, i literally was curled up on the floor crying. Ive had 4 BM today, but still felt so conostipated. I finalyl had to call my mom, who came out to get me (i got to college about a half hour away and live in a dorm there, she knows im not a crier and was scared that iw as crying and in so much pain). I finally had to have an enema (my 2nd this month, iw as in the hospital a few weeks, i was in som uch pain they thought my appendiz was bursting, but now i was just F.O.S. <_< ). Anyways..even though i struggle with it mentally, ive realized that id much rather feel better then eat gluten (andw eird thing is i didnt eat all that much bread or anything, but now i crave pizza or pancakes, cuz i know i cant have em..) Im thinking of doing the enterolab test (moms checking to see if its covered by insurance) or york testing, just so id have some form of clue if i do have gluten intollerance (and see if i have the gene, so my siblings will get tested since they both have problems). Anyone going thro the same thing, or had any of those tests? Thanks for "listening"!

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tiffjake Enthusiast
tiffjake
Posted

Hi Lisaemu! I am TOTALLY "hearing" your story! Been there, done ALL that! I "tested" myself for months, and then ended up in the hospital after eating a bowl of spag! It got bad enough for me to quit putting my body through that. I know it is hard, it is new for me too (just 6 mos). But you have to stop putting yourself through that. Sounds like you already have, and thats the only reason I am saying that to you. I won't tell you how to eat or live...but it sounds like you have already come to that decision on your own. I did have the EnteroLab test and it gave me the confirmation that I needed. I then went to my doc for the blood tests, but since I had been gluten-free for 3 weeks at that point, my blood work was "inconclusive", go figure! But when I "tested" myself again, and got sick, I got more confirmation. Forget the bloodwork, I am going to listen to my body! This board is great though, and welcome to it! Feel free to PM me anytime! Take care! Tiff

megsylvan2 Apprentice
megsylvan2
Posted

Lisa, so sorry you are having such a rough time of things lately. And how difficult it must be to be dealing with it in a college dorm. Talk about having no comforts, wow. I'm sure it is not pleasant. My son is dealing with as yet undiagnosed intestinal issues at school too, and it is no fun.

I'm a newbie at this like you are, and just wanted to tell you that I seem to be repeatedly going through the same cycle of feeling better, then disbelief, testing myself, pain & problems, healing through diet, feeling better, disbelief....

Just went through a big cycle where I finally proved to myself that these foods were still a real problem for me, and wrote a post that I was going to hang a copy of my post on my refrigerator to "remind" myself of how I feel the next time I was tempted to think it was all in my head. Of course, then I feel better, and start to push the boundaries a bit and the cycle seems to start all over again...

I think being undiagnosed has a great deal to do with it - for me. And also, for me, the fact that I had no problems in my life until now. (I'm way older than you.) It seems difficult to comprehend.

I suspect that this is a fairly typical reaction. Maybe some people are better at believing and accepting it right away, and maybe there are others of us that struggle with acceptance and disbelief. And since the medical community doesn't seem to have its act together regarding Celiac and gluten/wheat/food intolerances, it just makes it more difficult for us.

I'm sure the college lifestyle itself makes this tougher to deal with as you are surrounded by lots of foods you cannot have and that is what everyone's diet and food choices consist of. You don't have your own refrigerator or kitchen, and you cannot always be preparing yourself healthy snacks. It's gotta be tougher to deal with!

There are some great kids on this board who are dealing with this in college, so I'm sure you'll be hearing from them. They give lots of great tips on how to deal with it in college and how to cope.

Hang in there! Keep coming here for support. It's a great community of sympathetic people who know what it is like to be in your shoes.

par18 Apprentice
par18
Posted
Well anyone can call me a dumba$$...I officially learned soemthing this week tho! I had been gluten free for 2 months, but struggle with it mentally (since im not officially diagnosed) i was just startng to feel better (i actually had a few days where my stomache didnt hurt! amazing!) anyways..i went on vacation this weekend with my mom, got stuck at a buffet where EVERYTHING was made with wheat(gotta love dollywood..) so i fugred i would "test" myself..and besides my stomache being bloated, i didnt hurt THAT bad. I was so excited..so i ordered sandwiches and had rolls with dinner. then i came back home and got some bagels and cereal..i was so excited ot ahve rbead again! Well..that only lasted about a day and a half! I was in so much pain it was awful. Today I couldnt even wlak, I thought I was going to throw up. My stomach hurt so bad, i literally was curled up on the floor crying. Ive had 4 BM today, but still felt so conostipated. I finalyl had to call my mom, who came out to get me (i got to college about a half hour away and live in a dorm there, she knows im not a crier and was scared that iw as crying and in so much pain). I finally had to have an enema (my 2nd this month, iw as in the hospital a few weeks, i was in som uch pain they thought my appendiz was bursting, but now i was just F.O.S. <_< ). Anyways..even though i struggle with it mentally, ive realized that id much rather feel better then eat gluten (andw eird thing is i didnt eat all that much bread or anything, but now i crave pizza or pancakes, cuz i know i cant have em..) Im thinking of doing the enterolab test (moms checking to see if its covered by insurance) or york testing, just so id have some form of clue if i do have gluten intollerance (and see if i have the gene, so my siblings will get tested since they both have problems). Anyone going thro the same thing, or had any of those tests? Thanks for "listening"!

Hi Lisa,

I have a a couple of questions? First did you go completely gluten free for the couple of months? Also when you are in school can you get enough gluten free food to eat? You say you are in a dorm. Are you on a meal plan? Can you approach the school about your food sensitivity? There are a lot of naturally gluten free foods. This is not the most convenient thing in the world to do but millions of people do it every day. The only advantage I can see for you now is to start healthier eating habits that will last a lifetime. When your college days are over you will be so much more knowledgeable at your age than people like myself.

I got on this diet 12 months ago after only about 2 months of really bad symptoms. When I responded in a positive manner in only a couple of days I was "not" tempted to ever go back to gluten.

Since you are in college I know you have the capability to learn. You must teach yourself this modified lifestyle. I know there is a lot of pressure from friends and sometimes family to "fit" in but this cannot stop your quest for a better quality of life. You must approach this just like one of your courses in school. For me the key to success with this diet boiled down to two main things"organization and routine". Don't be afraid to ask questions and seek out all the information you can.

As far as the "official" diagnosis that you seek, if you think that will make staying on the diet easier then maybe you should try to get one. Either way the treatment is the same.

Let me close with one last thing. I noticed in your post the letters IBS were used a couple of times. I think something like IBS could be a short term thing but not the long drawnout situation a lot of people say they experience. To me the bowel is irritated for only 2 reasons. One there is a bacteria/virus type issue or your body does not like what you are "feeding" it. I feel a lot of people could benefit from diet adjustments but most would rather not try. Good luck.

Tom

marciab Enthusiast
marciab
Posted

If it makes you feel any better, I figured out that my last gluten transgression was brought on by hormones. I don't get the normal PMS, I just get the cravings.

This wasn't a problem before going on this diet 9 months ago. I have just always eaten what I wanted when I was like that. I have eaten a whole pan of brownies, a box of Reeses pb puffs, whole key lime pie, etc. And never thought about it.

I am hoping this month will be easier. At least I know what to look out for now. And I paid for the last gluten gluttening for at least 2 weeks.

There's a good possibility I will get very grouchy this month. LOL

Good luck ... Hope this makes you feel better... Marcia

lisaemu Contributor
lisaemu
Posted
  • Author

Thanks for your replies. I'm actually in a dorm thats set up like an apartment...I have my own kitchen, share a bathroom with one other girl, and share a kitchen with 2 people. I lived in a dorm last year with a meal plan, so I know it could be a lot worse. I guess its just hard cuz they always have pizza (and theres a cake sitting on our counter right now from their birthday, with cake pieces EVERYWHERE..proll ynot good..) I dont even like pizza or cake and have always ate healthy, it just annoys me now that I can never have it again. I only have one week of school left, and then Im moving into another apartment so that will prolly be good. Thanks for those who listened, its just so frustrating because ive always been the "healthy" one (major athlete, always ate "right") but ive been sick for the last few years no matter what i do. I know that the gluten free diet helps me a lot, its jsut when i start to feel better i figure or maybe it was soemthing else and i test myself. But this has happened to much, and each time i defiantely "fail" the test. Im going to do entrolab i think, just for piece of mind and so the rest of my family will be aware if i do have the gene (im almost postive my dad had celiacs..along with being schizophrenic...and my sister has a ton of stomach problems too). Anyways..thanks for letting me vent!

tarnalberry Community Regular
tarnalberry
Posted

you can have pizza again, you just need to make (or buy) a crust that doesn't have gluten. :-)

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