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Lister

The End Of The Road

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You mentioned that your doctor said you might have Crohn's. My husband has it, and while it's a tough disease, it's not the worst thing in the world that could happen to you. He has been diagnosed for almost 15 years, he leads a semi-normal life. Most people don't even realize he "has it". He works, goes to church, plays softball, goes to college. He leads a pretty busy life, he takes a lot of meds. He is very healthy though (other than the frequent bathroom trips).

Whatever your diagnosis, as long as you have the attitude that you are going to do what it takes to get better, your whole quality of life will change. Especially with Crohn's a good positive attitude can make a huge difference.

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the only reason i worry about chrons is beccause it increases your risk of colon cancer, wich runs in the family. Im rooting for IBS at this point but they have to rule out everything first

i have IBS like bathroom trips aka i eat something and withen 2 minutes i have a erdge to use the restroom-but usaly nothing comes from it, and even after im done i still feel like i need to go, i match every symptom on the pamphlet for IBS but i understand that alot of other things mimic ibs so i will have to wait for the colonoscopy- anyone had one of these do they hurt?? how long does the prosedur last? do i haev to be put under?? i hate anastetics

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the only reason i worry about chrons is beccause it increases your risk of colon cancer, wich runs in the family. Im rooting for IBS at this point but they have to rule out everything first

Celiac can cause colon cancer too (if I recall). It's no use worrying about something you have no control over, in fact if you have crohns worrying is the worst thing you can do.

Take a step back and think about what you actually have control over, think about what you can do to affect change in those areas, and leave the rest to work itself out. (I would say hand it over to God, but I am religious, and if you aren't that probably sounds pretty cheesy)

I don't believe in IBS, I think it's what doctors say is wrong with you when they can't figure out what's wrong with you. (however, I am probably not unbiased on that issue)

Crohns, celiac, ulcerative colitis, these are all real diseases, tough diseases, but there are things that YOU can do to feel better. Focus on that.

As far as the scope.... the prep is worse than anything, but they give you really good drugs, so after you don't really remember much at all. You should stock up on things you like to drink though, so you don't get dehydrated. ;)

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"Crohns, celiac, ulcerative colitis, these are all real diseases, tough diseases, but there are things that YOU can do to feel better. Focus on that. "

well they already figured out its not celiac, so if they nock off cchrons and nock off ulcerative colitis does this meen ibs or just meens there clueless?

whats the prep??? theres no cutting involved is there??

i guess on a plus side i cant rule out parasites or bactera causing all of this, since i have not been able to get them a sample still

also my pains are becoming less frequent, usaly in the morning from around 6:30-8 and then at night after 9pm. Like right now my stomic is going crazy- maybe its hunger ihave not ate yet and i have been awake for 2 hours, but from what i can tell i dont get hungry anymore or atleast its not the saem feelign anymore, but the fact that the pains are less often makes me think maybe this is all related to gluten maybe i dont have anything else at all, ahh who am i kidding

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"Crohns, celiac, ulcerative colitis, these are all real diseases, tough diseases, but there are things that YOU can do to feel better. Focus on that. "

well they already figured out its not celiac, so if they nock off cchrons and nock off ulcerative colitis does this meen ibs or just meens there clueless?

It means they don't know. They will probably give you meds anyway though.

whats the prep??? theres no cutting involved is there??

you have to drink this stuff the day before and be on a liquid diet. The stuff you drink "cleans you out" so you will have D all day long. You should take off work for it, you won't feel like leaving the bathroom at all.

i guess on a plus side i cant rule out parasites or bactera causing all of this, since i have not been able to get them a sample still

it will be good for them to go in and have a look around.

They don't put you all the way out, but you really won't know much about what's going on, they give you very good drugs. ;)

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Tyson chicken strips are gluten free (non breaded, of course). These are just the plain ones frozen in the bag. WalMart's brand says gluten free right on the bag. Perdue Chicken breasts are also gluten-free

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thx for the info on the chicken will look for some today.

on the chrons disease i looked it up

What are the symptoms?

The most common symptoms of Crohn’s disease are abdominal pain, often in the lower right area, and diarrhea. Rectal bleeding, weight loss, arthritis, skin problems, and fever may also occur. Bleeding may be serious and persistent, leading to anemia. Children with Crohn’s disease may suffer delayed development and stunted growth. The range and severity of symptoms varies.

well my pain is in the left side when it is acually pain usualy just growls that burn and popping noises, i dont have a diarrhea problem or atleast not usualy besides sometimes its like a wet mix of c and D, bleeding besides 3 weeks ago (went to ER nothing found, did hemocult card nothing found- blaiming on strawberry applesauce) no arthritis, no skin problems besides acne-going away now that im gluten free, and i dont really get a fever, so mabye i can rule out chrons??

also i already had a upper GI done with no iflamation found besides for the subsarean folds(scalloping) and they use gis to help diagnose chrons (im sure if there was a question in the matter my doctor would have informed me right?) so yay maybe i dont need to worry about this one atleast- well i guess it would explain the fissure i had when i was 12- but i meen 12-20 thats a huge diffrance in time i guess symptoms would have continued if they where that bad when i was 12 so that was problably something of its own

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thx for the info on the chicken will look for some today.

on the chrons disease i looked it up

What are the symptoms?

The most common symptoms of Crohn’s disease are abdominal pain, often in the lower right area, and diarrhea. Rectal bleeding, weight loss, arthritis, skin problems, and fever may also occur. Bleeding may be serious and persistent, leading to anemia. Children with Crohn’s disease may suffer delayed development and stunted growth. The range and severity of symptoms varies.

well my pain is in the left side when it is acually pain usualy just growls that burn and popping noises, i dont have a diarrhea problem or atleast not usualy besides sometimes its like a wet mix of c and D, bleeding besides 3 weeks ago (went to ER nothing found, did hemocult card nothing found- blaiming on strawberry applesauce) no arthritis, no skin problems besides acne-going away now that im gluten free, and i dont really get a fever, so mabye i can rule out chrons??

also i already had a upper GI done with no iflamation found besides for the subsarean folds(scalloping) and they use gis to help diagnose chrons (im sure if there was a question in the matter my doctor would have informed me right?) so yay maybe i dont need to worry about this one atleast

they really have to scope you to diagnose chrons. The bleeding and stuff is when it gets really bad. The acne and skin problems are secondary, and don't happen to everyone. As far as the Upper GI, they might not have been able to "see crohns" because it affects your large intestine and until it's very bad it doesn't "show up" on xrays or MRI's or any of that.

I am seriously not trying to freak you out.

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yeah i was just gonna post that, it could be i am just not that bad yet and thats why i dont have all the symptoms. Same with ulceritive colitis i dont really match any of the symptoms for that either but i guess its still early.

my symptoms

Abominal Discomfurt-

like small pains in my left side sometimes

growling noises/poping noises-burning sensastion in spot before growl happens

Diahrea-well that was before going gluten free and i have not really had a problem since besides for *sorry gross* wet gas/ sometimes the stool will be mixed with a tiny bit of D but not real D

Constipation- big one for me lately

Brain Fog- ugh i hate it, sometimes goes away for a bit but tends to be pretty presestant

random temp- will jump around from 97.8-normal for me to 98.5-makes me hot to 99.4-wew burning up and then back down and it will do this all day( i guess its normal for your temp to raise and fall just man after mine hits 99 i get really hot

gas-well everyone has this but i can usualy feel it go thru me before i get it

visits to the restroom the second i eat- not containing the food i ate i just have to go not sure why

malnurashment- well that was before going gluten free and into the first week but now i seem to be absorbing everything

Black specks-these are in my stools like little black specks of coffe grounds, but my stools themselfs are not black or red- i have had stool testing done for blood and they came back negative

green stools-coverd in mucus but now there back to beeing a more normal color so i dont know

so if its still to early to detect by GI will it be found by colonoscopy or the smaller version of a colonoscopy??

oh and i have had a catscan already done also if that can find anything

sorry i know i post alot its just im looking for some answers or relife or atleast the truth, before i have the prosedures done because there talking as long as month before i get to see anyone

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im at work and i still cant seem to distract myself from thinking about all of this so much, its not like there is anything more i can do personaly, but i cant stop obsessing over it and thinking about it. man im a wreck

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You can have gluten intolerance and even celiac with neg. test results. Stick with the gluten free. It is for life. Here are other things I think you need to get checked for. Parasites, candida overgrowth, thyroid and adrenal issues. What state are you in? You should look into help for health insurance for low income people. Good luck!

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im at work and i still cant seem to distract myself from thinking about all of this so much, its not like there is anything more i can do personaly, but i cant stop obsessing over it and thinking about it. man im a wreck

I am so sorry you are going through so much right now. I am relieved to hear that you are staying gluten-free that is really important. You did not have enough damage apperantly yet for the doctor to diagonse celiac but you are lucky he recognized that you need to be gluten-free to keep from getting that way. It is going to take awhile to get all the nasty neurotoxins out of your system. I do hope you have applied for emergency assistance and keep your paperwork handy even if turned down because the hospital and doctors may want to see that you applied before they give you a lowered bill or possibly use charity funds to pay it. Do not give up. My 'little red feet' used to tear me apart, the depression was so overwhelming at times and when glutened now the thoughts that go through my head are horrifying. For me, as a 'child of the 60's, it helps to think of the depression as a 'drug' type of effect. It will go away after the drug (gluten) clears my system. Unfortunately that can take a while. I try to drink lots of water and make sure not to touch alcohol until I am me again. I really wish I could reach out and give you a hug and tell you everything is going to be okay. It will be okay, no matter how tests turn out you will get through this.

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Gluten intolerance- can this cause physical damage (im looking for a explanation about the small subsarean folds in my small intestine (scalping))

and so whats the diffrence between gluten intolrency and celiac- since it produces the same symptoms-hurts your body- and starts to heal when you elimanate gluten?? so whats the diffriance besides genes

and what one is worse intolerance or celiac?

im scared to go to sleep i dont want to have those crazy breathing problems again they really scare me- like i almost ran myself up to the hospital last night, and when i say ran i meen that litaraly since i dont have a car

The main difference between celiac disease and gluten intolerance is it is possible to have gluten intolerance that will never result in flattened villi. It's also possible to have gluten intolerance that will eventually result in that, in which case you would then be considered to have celiac disease. There is a difference though, between celiac disease and non-celiac gluten intolerance. I believe subclinical gluten intolerance is actually the correct term.

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thanks for all the support everyone its really helping, if you see anything on this post that has not got answerd yet please do, not really nesasary just would be nice. but really thank you all so much you really helped me yesterday

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doctor just called me again, says hes not going to refure me to a specialist until i get those bactera and parasite samples in because he says depending on what they find it may not be nessasary. He says that if its sertain parasites they could be causing all of my symptoms. I did have what looked like a piece of tape come out of me about 5 days ago so hey maybe i will be lucky and there is like a 50 foot worm inside of me. w00t hey that makes me a in a better mood. If the doctor thought that it was definatly something else he would just send me up there. I guess he is also just trying to save me money but still it makes me feel a little better.

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You said it's payday. What you need to do is pick up a cheap rice cooker and a sack of rice. Then learn how to cook rice in the rice cooker. It is so much cheaper to cook rice than to eat gluten-free rice cracker snacks that the rice cooker will pay for itself the first week, and you'll never go hungry even if you don't have money to buy meat and vegetables for a day or two.

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Hey everyone here is all ready giving you the same advice I would. (Go talk to a church, any church, they will find a way to get some help.) I just want to say that I feel for you. You will be a much stronger person when you find your way through all these obstacles. I hope that you will find the best quality in the people around you.

HUGS

L.

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well this afternoon was a good day for me i did not worry at all and acually managed to have fun over the brain fog. I think it was the fact that the doctor said it could be a form of colitis- parasitic colitis that is, so that removed some temporary worry but now thats it nightime and im alone im starting to think to much again :( even if it is a parasitei just read there really hard to get rid of and can cause more damage removing then even keeping them. I guess i still hope its a parasite though i meen its better then having chrons or ulceritive colitis at 20. Im praying and i am athiest so that says something. I just want everything to be alright. I wouldnt also mind if i could hurry up and get results :(.

anyone done any research on parasite testing, i was reading up on it and it says there is only a 1% chance they will find anything even if there is a infestation is this true? i meen why would they issue a test to find something if there is only a 1% chance of finding it........ this makes me worried about false negatives- i am really sure i got something inside of me, my pains move around alot, and in my stools i get little white things that look like full peices of rice- i have not had rice for over 2 weeks btw. so im thinking maybe those are some form of eggs, also there was that thing that looked like tape that i passed about 6 days ago. I talked to my doctor about the black specks in my stools and he said its not blood i was already tested for blood and there is none so stop worrying, so i asked him what it was and he did not have a response :(

oh well its 10 pm i gotta be up for work at 5 its about time to head to bed

oh and about my panic attack/axity attack/ whatever happens when i try to sleep, last night i only had 1 attack before i fell asleep, as scary as that was it was much nicer then 10

if you cant tell by my posts im definatly in better spirit today then i have been, wish i could change the header of the post to something less dramatic sorry about that, i was really really feeling low when i started this thread

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if you cant tell by my posts im definatly in better spirit today then i have been, wish i could change the header of the post to something less dramatic sorry about that, i was really really feeling low when i started this thread

We all have our low days, and this board is a great way to get through them. I am glad you are feeling better. Trust your doctor on the parasite issue, they can tell from stool samples quite reliably. I would not take anything from any web site to deal with this, there are some folks that advertise on TV and in magazines that would like us to think that we are full of parasites that only their product can get rid of. This is not the case. Your doctor will be able to tell you for sure and for certain if they are a problem and in our society it is not a real common problem. Many of the antiparasitics simply clean you out real good, like the products that are given before a colonoscopy. If someone is celiac this might give a breif respite from symptoms and since 97% of us are undiagnosed it would be easy for them to think it was the clean out and thus some 'invisible' parasite that had removed.

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yeah well if you read my post from today its definaly not a invisiable parasite, i passed something that was about 2 inchs long round and orange in color, i chew good so i know its not food it really looks like a worm, i called my doctor and he says it sounds like a roundworm. I have stool sampls coming back hopefully on monday so i guess i will know then. Im really hoping for worms instead of any of the dreaded diseases he thinks i may have. Man i was having such a good day today i was in a great mood and had lots of fun at work *wow thats a suprise* but now that im home by myself again im getting depressed :( i never have this problem i just have been so down lately, im worried about the results, what if the phone rings on monday and he says theres nothing and he has to send me up to the specalist :(. now i am just as ancy as i was when i was waiting for my blood panel. I cried so hard when i got the results back from that, because it just provved that there was really something wrong with me, something that couldt just fix itself by a diet. If these tests come back negative i will have a breakdown i know i will im not this strong to keep playing these games. why am i complaining i dont eve know the results yet. Just nervise i want everything to be fine again. and to top off my crummy mood my left arm hurts but its a strange hurt, if i extend my arm or lift it up i get a pinching pain in my bycep, and my bycep hurts to tuch wierd very wierd

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still no results back but i did talk to my doctor (who i hate and will be swiching once this is all over after having a very rude phone conversation with) and he took away all my rays of hope that where keeping me in a good mood. He desided to tell me that if it is a parasite then we will take care of that before having the colonoscopy to figure out what form of colitis i have. I thought the worms could be the cause of all of this :(. Now hes saying that its just worms ontop of some form of colitis. Whats happening to my body its breaking down, in 1 month i have managed to Get the flu, become gluten sensative, Get worms and now a form of colitis, whats next im going to find out i have aids or cancer i meen fricking A i cant take this anymore im not as strong of a person as i like people to think and this is pushing me over my limit. so hes saying hes not going to refer me to the specialist yet until we figure out if i have parasites and if so treat them then he will refer me- he says the referal could take months, so why does he not just file it now if hes planning on sending me anyways?? i think i have finally drove my girlfriend off with my exessive bad attitude and b%$@#ing but i cant stop i cant find the sun behind the clouds, not when they keep getting so dark......

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still no results back but i did talk to my doctor (who i hate and will be swiching once this is all over after having a very rude phone conversation with) and he took away all my rays of hope that where keeping me in a good mood. He desided to tell me that if it is a parasite then we will take care of that before having the colonoscopy to figure out what form of colitis i have. I thought the worms could be the cause of all of this :(. Now hes saying that its just worms ontop of some form of colitis. Whats happening to my body its breaking down, in 1 month i have managed to Get the flu, become gluten sensative, Get worms and now a form of colitis, whats next im going to find out i have aids or cancer i meen fricking A i cant take this anymore im not as strong of a person as i like people to think and this is pushing me over my limit. so hes saying hes not going to refer me to the specialist yet until we figure out if i have parasites and if so treat them then he will refer me- he says the referal could take months, so why does he not just file it now if hes planning on sending me anyways?? i think i have finally drove my girlfriend off with my exessive bad attitude and b%$@#ing but i cant stop i cant find the sun behind the clouds, not when they keep getting so dark......

I could of course be wrong but he may also be wanting to see how much relief you get from the diet. You said in another post you had a normal BM today, that is an excellent sign. You also seem to have strong neuro effects from the gluten, depression and obsessive thought patterns and this may take longer to subside. Your doctor may not be a great personality but at least he found the gluten intolerance and is eager to help if you do have a parasite infection. Gluten intolerance itself can cause coliits type symptoms, I was up every night for at least 2 hours at a time with extreme cramps, mucous and D for over 5 years and had daily D with IBS for 10 years before that. You haven't been on the diet long, look hard for sources of cross contamination, check your soaps, shampoos and make sure you get crumbs out of your kitchen. Also make certain the gloves you use at work are not powdered. Things seem to slowly be getting better for you and I hope this continues. But as others have said you need to try and relax a bit, do something to get your mind off of all this whether it is renting a movie or a video game or just getting out to a freinds house.

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i just wanted to say thank you again to everyone who has helped me recently. You all have helped to make my days alot brighter and less depressing. thank you all so much

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i just wanted to say thank you again to everyone who has helped me recently. You all have helped to make my days alot brighter and less depressing. thank you all so much

Lister we have all been where you are. Being diagnosed with something like this changes your life, it can seem daunting at first but things will improve. It won't be too long before folks start to say, 'hey you look great how did you do it?' and you will be able to educate them. Your young and were diagnosed promptly, you have a long and most likely healthier life ahead of you than you would have ever thought. Soon you'll have the energy and with the large weight loss you had you will be able to move around easier and perhaps you might take up bike riding, or jogging, or swimming, or skateboarding or whatever sport you fancy. I hope things continue to improve steadily but bear in mind that sometimes we seem to have a rollercoaster ride as we are healing. I hope you have sunshine today, inside and out, and that you can take time to go outside somewhere pretty and have a minute to just breathe in the air and relax.

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