Waiting To Hear From My Dumb Doctors

[Alexander]

Hey so ive been having abdominal pains for 2 years, saw doctor after doctor they kept telling to its acid reflux its acid here take nexium take zantac, etc... finally i got fed up switched to a different doctor, then the pain stopped for 7 months it just poof went away then it came back a couple months ago worse than ever, my so i go to emergency they tell me its acid, go back again they say its acid finally i switched doctors again, and he started testing (about time) 1st he thought it might be crohns so i started eating a low fibre diet didnt help so kept going back to see the doctor, finally it happened i got so sick last week i couldnt keep anything down i had dropped 25 pounds in 5 weeks, ( im not a big guy 145lbs on a good day) so i went to emergency and tehy checked me in and started poking and prodding, (keep in mind i dealt with 10 doctors all speacializing in diferent things 2 of them were GI's) so the one doctor mentions that there suggesting its celiacs " i said celiacs whats that?" GLUTEN INTOLERANCE, so to me it made sense with all the sickness and pain that there is no way it would be crohns because i went from eating really healthy lots of fibre then when i though i had crohns i started eating low fiber but higher gluten, and that is when i had the most pain and sickness, so now ive been sticking to a strict gluten free diet and went 6 days without an attack which is not normal for me, then on saturday i decided to have a hamburger ( wheat filler) and brownie ( pure gluten) and what happened sunday and monday and tuesday morning, (the sickness ) so im back to normal now drinking lots of water to get the gluten out and taking gravol to control the nausea, and doing great. Now out of 2 doctors one is saying i defeinatly dont have crohns and hes sure its celiacs because i keep telling him how good im doing on a gluten free diet where as the other doctor is telling me no way that i have celiacs and that its crohns or lympthoma ( YAY) i said what is lympthoma " cancer the doc says" and then he started going on about crohns and how he is going to give me predizone to help the pain and i said " HOLD UP " if you think i ahve cancer why would you give me steriods and not do a biopsy, he said " well i dont want to do a biopsy because i dont think its cancer " i said " WELL IF YOU THINK ITS LYMPTHOMA DO THE F!@#$$ BIOPSY AND STOP GUESSING"

OUT OF ALL THAT WHAT DO YOU THINK ...? DOES IT SOUND LIKE CROHNS OR CELIACS...

FROM WHAT IVE READ CELIACS AND CROHNS HAVE ALMOST THE SAME SYMPTOMS...

THANKS

[DingoGirl]

To me it sounds like Celiac, but I'm not that familiar with Crohns.....are they goign to do any testing? Because, to get accurate results, you MUST be consuming gluten, unfortunately, so you might want to do the testing soon....if you don't want to bother with the testing, just remove gluten - and you must be VERY strict about this, checking lotions, chapstick, etc. and all hidden glutens, keep researching, you'll find out what they are on this board! - and if you feel markedly better, than it most likely IS Celiac.

And doctors, what do they know! Well, most anyway, are not familiar with Celiac and severely underdiagnose/misdiagnose all the time. You were fortunate to have one that suggested it - most don't know a thing about it or will actually even refute it if the patient suggets it.

Keep coming to the forum, lots of good information here, and let us know your progress.

[snapple]

It sounds like celiac to me too. You need to do what is best for you, even if your dr doesn't think your symptoms are one thing or another. I know my dr didn't think it was, but when I went on a gluten free diet, the change was immediate and extremely noticable. From what I understand, most drs are from the old school i.e. celiac is a childhood disease and extremely rare. Since that isn't the case ( american medicine doesn't seem to have caught up with reality), you need to be proactive and make your own decisions about your body. Remember, medicine is a practice and science, there are no absolutes.

Good luck and I hope you figure it out very soon and feel great even faster!

[Nantzie]

I don't know much about Crohn's either. But your experience sounds like celiac to me, complete with the uninformed doctors.

And how dare that doctor suggest to you that you may have CANCER and then do a takesy-backsy like a schoolyard bully. If a doctor ever did that to me, I'd be talking to the hospital administrators about it. You don't just throw that word around.

Arg.

Well, I'm glad you're feeling better, and you've found us here. This is a wonderful place with lots of good information and advice.

Nancy

[Alexander]

Thanks... I left some details out it was getting to long, but when that doc was telling me he thought it was crohns or lympthoma he mentioned that Mario Lemiux had it and i said " thats great you know more about hockey than medicine, i know what you were hiding in your medical books" he didnt like that to much, and the fact that when i asked my regualr doctor to prescribe me predizone he refused because he said unless i knew for sure i had crohns the medication would do more dammage than good, which i understand now... and the other doc wanted to put me on it despite knowing what it actually was... I was in the hospital for 3 days last week and they did blood tests every day and they did endoscopy and CoLonoscopy Ewhwhw ... not comfortable at all... but it was somthing that needed to be done they took a biopsy from my SI and Stomach ... and ill find out this week for sure what it is... i am going to see the hospital director actually and i have written a letter to the health care minister for my province and after they give me my diagnosis im going to turn around to my regular doctor and say i want a biopsy for lympthoma and a second opinion so this is going to get dealt with properly the second time around, becuase the doctors keep contradicting one another, and the doctor that is a GI when i was in the hospital last week is stupid. i told him that i had been gluten free since being out of the hospital and everything they gave me in the hospital to eat soup yogurt etc is gluten free and ive been gluten free for a week and a half now and been fine except for eating food on saturday at a BBQ with GLUTEN brought back the bloating nausea and vommiting but when i told him this he never said to keep on a gluten diet he said" a GLUTEN FREE DIET COSTS AN ARM AND A LEG" WTF kind of doctor says that i dont care if i had to eat diamonds if they were edible and the only thing i could eat i would buy them when it comes to health who cares about price... so ive been feeling pretty good this past week ive never had so much energy and just being happy from not having any pain i even after the past couple days of feeling not so great i recovered this afternoon and stuck with gatorade water adn tea and a couple soft GLUTEN FREE breakfest bars and GRAVOL is such a beautiful drug ... i will keep in touch and let you all know whats going on... THanks for your help so far....

[Guest nini]

regardless of the results of your tests, stick with the gluten-free diet. Since you've had the blood tests and the biopsy there is no reason to continue consuming gluten at all. If they want to do other testing for lymphoma or other stuff you do not need to be consuming gluten. Since you have shown a definite positive dietary response, you are at the very least, Gluten Intolerant, so even if they don't dx Celiac, you now know that you need to stay away from gluten. Yes it's true that untreated Celiac can cause lymphoma, so sure it's wise to rule that out. But once you are completely strictly gluten free for a while, the damage does begin to heal, so that would reduce your risk for future lymphomas to that of the "normal" population (whatever that means!)

[Alexander]

regardless of the results of your tests, stick with the gluten-free diet. Since you've had the blood tests and the biopsy there is no reason to continue consuming gluten at all. If they want to do other testing for lymphoma or other stuff you do not need to be consuming gluten. Since you have shown a definite positive dietary response, you are at the very least, Gluten Intolerant, so even if they don't dx Celiac, you now know that you need to stay away from gluten. Yes it's true that untreated Celiac can cause lymphoma, so sure it's wise to rule that out. But once you are completely strictly gluten free for a while, the damage does begin to heal, so that would reduce your risk for future lymphomas to that of the "normal" population (whatever that means!)

Oh Definatley, i have not thought twice about going bsck to eating gluten, just what ive been going through is enough to keep me away from it for ever, it is the worst thing ever to have to deal with and the nice thing is celiacs you dont need medication its purely diet and i feel way better not eating gluten so that is enough incentive for me to strictly eat gluten free food...

[Ursa Major]

Hi Alexander, I am glad you finally figured out what's wrong with you. Just forget about that one idiot doctor, he is the kind to be ignored for sure. Good for you to decide to just stick with the diet, no matter what any of them say. I hope you get completely well quickly.

[azmom3]

Hi Alexander, I am glad you finally figured out what's wrong with you. Just forget about that one idiot doctor, he is the kind to be ignored for sure. Good for you to decide to just stick with the diet, no matter what any of them say. I hope you get completely well quickly.

Hi Ursula,

I notice your name on practically every post I look at and you just seem so helpful to everyone. I also noticed you were diagnosed with Asperger's Syndrome, which my son seems to be showing possible signs of. Can I get any advice, thoughts, etc. from you regarding my son? He just recently turned 10 and has been having behavioral problems since he was 5, but they seem to be getting progressively worse. He fits the description of ODD perfectly and has many, but not all of the symptoms of Aspergers. The one that sticks out to me that he doesn't have is an obsession with one thing. However, a lot of the other things sound like him...he only has 1 friend and is usually left out with groups of kids playing. He does not handle this well...crying, anger, hitting, screaming....He does things that are very annoying to people, he doesn't make eye contact with people, he has "outbursts" when told something he doesn't want to hear. And there's more.....I also suspect celiac although he has not been tested yet.

[eKatherine]

ive been gluten free for a week and a half now and been fine except for eating food on saturday at a BBQ with GLUTEN brought back the bloating nausea and vommiting but when i told him this he never said to keep on a gluten diet he said" a GLUTEN FREE DIET COSTS AN ARM AND A LEG" WTF kind of doctor says that i dont care if i had to eat diamonds if they were edible and the only thing i could eat i would buy them when it comes to health who cares about price...

I don't spend any more than I did before going gluten-free, probably because I cook rice and rice noodles more often and no longer buy artisan bread and other baked goods. But seriously, this is a doctor who has no concept of shopping or diet or cost. A gluten-free diet costs more than medication? That would be pretty hard to do.

Crohn's can be associated with celiac, and it is possible to have both.

[Alexander]

I don't spend any more than I did before going gluten-free, probably because I cook rice and rice noodles more often and no longer buy artisan bread and other baked goods. But seriously, this is a doctor who has no concept of shopping or diet or cost. A gluten-free diet costs more than medication? That would be pretty hard to do.

Crohn's can be associated with celiac, and it is possible to have both.

Oh man, that would be wonderful to have celiacs and crohns, LOW FIBRE and NO GLUTEN that would be a very strict and hard diet, i live in northern canada in a town called Yellowknife, and it is already somewhat difficult to find GLUTEN FREE food that is labeled, ive done oke so far today i found these enrgy bars there called Perfectt 10 and they are gluten free and they market them gluten free is pent 30 minutes looking at energy bars because ive lost so much weight and havent been eating to much solids so i need to get my energy back and gain some weight...

[eKatherine]

Oh man, that would be wonderful to have celiacs and crohns, LOW FIBRE and NO GLUTEN that would be a very strict and hard diet, i live in northern canada in a town called Yellowknife, and it is already somewhat difficult to find GLUTEN FREE food that is labeled, ive done oke so far today i found these enrgy bars there called Perfectt 10 and they are gluten free and they market them gluten free is pent 30 minutes looking at energy bars because ive lost so much weight and havent been eating to much solids so i need to get my energy back and gain some weight...

Do you cook? As I said, I rarely buy gluten-free foods, but if I was trying to put on weight (never a problem for me) I'd be eating homemade french fries, lots of rice and rice noodles, making cookies and brownies from recipes that mostly use normal ingredient substitutions.

[Ursa Major]

Hi Ursula,

I notice your name on practically every post I look at and you just seem so helpful to everyone. I also noticed you were diagnosed with Asperger's Syndrome, which my son seems to be showing possible signs of. Can I get any advice, thoughts, etc. from you regarding my son? He just recently turned 10 and has been having behavioral problems since he was 5, but they seem to be getting progressively worse. He fits the description of ODD perfectly and has many, but not all of the symptoms of Aspergers. The one that sticks out to me that he doesn't have is an obsession with one thing. However, a lot of the other things sound like him...he only has 1 friend and is usually left out with groups of kids playing. He does not handle this well...crying, anger, hitting, screaming....He does things that are very annoying to people, he doesn't make eye contact with people, he has "outbursts" when told something he doesn't want to hear. And there's more.....I also suspect celiac although he has not been tested yet.

Azmom, check your messages, I sent you a PM.

[Alexander]

Do you cook? As I said, I rarely buy gluten-free foods, but if I was trying to put on weight (never a problem for me) I'd be eating homemade french fries, lots of rice and rice noodles, making cookies and brownies from recipes that mostly use normal ingredient substitutions.

Do you cook? As I said, I rarely buy gluten-free foods, but if I was trying to put on weight (never a problem for me) I'd be eating homemade french fries, lots of rice and rice noodles, making cookies and brownies from recipes that mostly use normal ingredient substitutions.

I do cook, but i think for now i am sticking to fluids for a while... everytime i eat solids ( they are gluten free ) i am getting sicking ... ive been eating gluten for 2years since i started gettin the pain, so my small intestine is probably really messed up, and right now as im typing i am not doing very well... i had these energy bars today they are gluten free i mentioned them above also i had an unsure nutrient drink and i think that those or one of them have made me very sick, i have tryed to vomit but nothing GRAVOL is keeping me from doing it, i have extremely painful bloating, i get this pain in my rib cage like someone is trying to jump out its sharp and last for a couple of miuntes, and i cant deal with the pain so i hold my breath to the point where im almost about to pass out... im not holding m breath to do that but i just completely forget whats going on, i went into work at 2 oclock and i knew i wasnt gonna be able to work i lasted 2 hours before i ended up leaving, im feeling a little better now, because im laying down and relaxed instead of sitting and having the phone ring, im so lucky i dont do any work that im lifting thigns anymore its nice to have a nice office job where i can sit in my office all day and not have to deal with anyone.... and the pain i dont want to take any tylonel 3 anymore because i dont think thats helping and im not sure how bad this gluten intolerance is so im getting to the point where im scared to eat things that arent labeled gluten free but i am not even hungry right now.... and from what ive read it takes a while to get all the gluten out of your body if you end up eating it... im so new to this that the things im buying i look over the ingridients and i know the basics of gluten free Wheat barley oat rye and all the drivatives .... but i have a feeling im still ingesting things with gluten... what can i do for a couple of weeks as far as eating i would like to have small amounts of solids but lots of fluids like soups , but everything in the store has gluten in it and as far as making soup i can do it but i dont want a difficult recipe because i am not in the right frame of mind to be able to comprehend anything difficult and i do not want to go back to the hospital even though i know thats what im supposed to do....

LEt me know i would really appreciate it...

Alex

[queenofhearts]

I do cook, but i think for now i am sticking to fluids for a while... everytime i eat solids ( they are gluten free ) i am getting sicking ... ive been eating gluten for 2years since i started gettin the pain, so my small intestine is probably really messed up, and right now as im typing i am not doing very well... i had these energy bars today they are gluten free i mentioned them above also i had an unsure nutrient drink and i think that those or one of them have made me very sick, i have tryed to vomit but nothing GRAVOL is keeping me from doing it, i have extremely painful bloating, i get this pain in my rib cage like someone is trying to jump out its sharp and last for a couple of miuntes, and i cant deal with the pain so i hold my breath to the point where im almost about to pass out... im not holding m breath to do that but i just completely forget whats going on, i went into work at 2 oclock and i knew i wasnt gonna be able to work i lasted 2 hours before i ended up leaving, im feeling a little better now, because im laying down and relaxed instead of sitting and having the phone ring, im so lucky i dont do any work that im lifting thigns anymore its nice to have a nice office job where i can sit in my office all day and not have to deal with anyone.... and the pain i dont want to take any tylonel 3 anymore because i dont think thats helping and im not sure how bad this gluten intolerance is so im getting to the point where im scared to eat things that arent labeled gluten free but i am not even hungry right now.... and from what ive read it takes a while to get all the gluten out of your body if you end up eating it... im so new to this that the things im buying i look over the ingridients and i know the basics of gluten free Wheat barley oat rye and all the drivatives .... but i have a feeling im still ingesting things with gluten... what can i do for a couple of weeks as far as eating i would like to have small amounts of solids but lots of fluids like soups , but everything in the store has gluten in it and as far as making soup i can do it but i dont want a difficult recipe because i am not in the right frame of mind to be able to comprehend anything difficult and i do not want to go back to the hospital even though i know thats what im supposed to do....

LEt me know i would really appreciate it...

Alex

Potato soup is very soothing to me, & quite easy: Saute some chopped up potatoes (& onions if you can tolerate them) in butter (or oil if dairy bothers you) for a few minutes, then add broth to cover generously & simmer until potatoes are soft. You can run them through the blender for a super-smooth soup, or simply eat it as is. You can add milk if you can tolerate it. I love to add herbs & greens, chopped, to the finished soup, but that may be too much for you at the moment.

Hope you feel better soon.

Leah

[Ursa Major]

Alexander, I found that I was unable to tolerate anything raw for several months after going gluten-free last year. And I mean even fruit needed to be well cooked (nothing crunchy or partially cooked). For fruit you can just buy applesauce or canned fruit, if you don't feel like cooking it yourself.

Why don't you try stir fry? That's usually what I eat (because I hate cooking, I have to do too much of it, as I can really only tolerate vegetables and meat).

You don't even need a recipe at all. Chicken and turkey are the easiest to digest, so, start with chicken breast. Cut it into strips (or buy turkey breast already cut up for stir fry), cook it in a large frying pan with some onions until done (but not browned), add cut up vegetables (whatever you like) and salt (your digestive system may not like spices right now, so take it easy with those), put a lid on and simmer until everything is well done (not necessarily mushy, though ). If you find you can eat only small amounts at a time, put some into a small pot to be warmed up later and put it into the fridge. I often cook enough in the morning for the whole day, and just warm up some of it several times a day.

[Alexander]

Potato soup is very soothing to me, & quite easy: Saute some chopped up potatoes (& onions if you can tolerate them) in butter (or oil if dairy bothers you) for a few minutes, then add broth to cover generously & simmer until potatoes are soft. You can run them through the blender for a super-smooth soup, or simply eat it as is. You can add milk if you can tolerate it. I love to add herbs & greens, chopped, to the finished soup, but that may be too much for you at the moment.

Hope you feel better soon.

Leah

THanks... thats sounds really good... as far as dairy i can tolerate it ive actually switched over to lactose free milk just because its easier to digest so itll give my system the chance to heal, and i gotta have my milk i eat lots of cereal rice krispies and frosted corn flakes... the only 2 cereals i can find that are gluten free i hope unless someone tells me differently and i hope they dont... i havent tryed the ener-g gluten free ones yet....

[ravenwoodglass]

THanks... thats sounds really good... as far as dairy i can tolerate it ive actually switched over to lactose free milk just because its easier to digest so itll give my system the chance to heal, and i gotta have my milk i eat lots of cereal rice krispies and frosted corn flakes... the only 2 cereals i can find that are gluten free i hope unless someone tells me differently and i hope they dont... i havent tryed the ener-g gluten free ones yet....

No wonder your still not feeling good. Rice Krispies and Frosted Flakes are NOT gluten free unless you are buying ones that are labeled gluten free. They contain Malt which comes from barley. For breakfast do eggs or even Carnation Instant Breakfast (but not the chocolate MALT flavor). The powder is safe but the ready made is not.