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willabec

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  1. hi i have posted before but it was a while ago.  posted regarding pretty much the same symptoms i am having now but it was worse back then.  been gluten-free for about 11 years.  was diagnosed a few years back with MC.  was put on meds for that but nothing seemed to work.  then somehow things got a better but now they are not as good.  they are still better then they were a few years ago (i was going to the bathroom 5-6 times a day) had a burning type sensation in my belly, gurgling usually on the left side.  all of my bathroom problems were primarily around lunch time.  well, now i am back to that.....have this pain in gut or sudden urge to go usually around 11:30-1:30.  sometimes it's ok (not 100% normal but not horrible either) but sometimes it is loose.  sorry if too much info.  i have also noticed the past few days (altough not today) that after eating lunch and/or dinner i would feel very bloated, not in my stomach but low.  i just really need to vent.  i have no idea what causes this and why usually at lunch time?  it's very frustrated and i don't know what else to do.  i have been trying to stay away from dairy, do eat a little but other than that i am at a loss. 


  2. i can't remember if i posted this question before...but here it goes....does anyone suffer from orange colored stool? i have been gluten-free for 10 years and the past couple of years things have gotten worse.....i have noticed for quite some time that pretty much every day, no matter what kind of stool i have, it's generally on the orange side.....help??!!


  3. long story short...having issues, went to a new gi dr. a couple of months ago....just went to a naturopath on monday....she prescribed a heavy duty probiotic....i just noticed on the label it does not contain wheat but it says it is processed in a facility that processes, wheat, and other allergens....should i keep taking it? do you all stay away from things that say "processed in a facility that contains, wheat, nuts, eggs, etc"????


  4. ok....i have celiac (diagnosed about 9 yrs. ago) about 2 1/2 years ago, started with loose stools, sometimes a burning sensation in stomach area, etc. had a stool test in sept. of 2008 i think that said i had a higher fat content but it was only a 1 day stool test....celiac blood panel came back normal. finally this november i had another endoscopy and colonoscopy....diagnosed with microscopic colitis and vili still flattened but better than my 2001 endoscopy. so dr. put me on prednisone for 15 days then entocort...things were much better in dec. but then in jan. things started to go down hill again...still better but not as good as dec. dr. then told me to take asacol along with the entocort....things still not better, maybe a bit worse. switched drs. b/c of some issues with old dr. new dr. said to keep on the asacol until the end of this month....i have now been dealing with what i think are acid reflux symptoms....lump in throat, belching, etc. no acid in throat though....and stools are kind of back to where they were back before i started any meds....so i just called new dr. left a message and said that i was taking myself off the asacol as it does not seem to be helping much and i kind of broke down....started to cry right there on the phone....i am just done...so tired of trying to figure out what the heck is going on...i am watching what i am eating...staying away from dairy as much as possible. now i really wonder if my symptoms are all due to refractory celiac or if something else is going on??? do any of you have a burning sensation? do you sometimes see a "film" on toilet water? are your stools not normal??? my main issue is that my stools get looser as the day goes on....it can be good in the a.m. (still not normal) looser after lunch and then sometimes i go late afternoon and then it is really loose or like water....i just don't get it....if any of you out there have any advice or suggestions, i would really appreciate it!! thanks!


  5. Good to know. Thanks for all the information!

    i have both celiac (diagnosed 2001) and now diagnosed with mc in november 2010....was put on a prednisone for a brief period and then started entocort - 3 pills a day.....it seemed to help for about a month and then things kind of started going down hill....then after another month dr. put me on asacol 800 mg hd- 1 pill 3 times a day....i did some research and i think the recommended dosage is 2 pills 3 times a day. i am switching drs....going to get a second opinion on tues. we shall see what the new dr. says.maybe just switching to the recommended dosage of the asacol will help me. good luck! any other questions, feel free to ask.


  6. Yes, there are a few around. Jerseygirl is one that I remember. Hopefully, they'll show up to answer the question. Or you could do a search and then send members Personal Messages with questions.

    what are your symptoms? i have both celiac and mc.....was on prednisone for a brief period (15 days) that helped a little, then tried entocort, things were ok but not as i had hoped, now on entocort and asacol at the same time...things possibly a little better...just started the new treatment about 2 weeks ago, so it may be too early to tell....some meds take a while to work, if they are going to.....


  7. Align probiotics says on the package "This product does not conatin lactose, soy or gluten" So they are safe. I've taken them before, but just started a new treatment today based on some issues that I've been experiencing.

    Wenmin

    i know they are safe...just curious as to which ones people have tried and which ones most people prefer.....


  8. Decent probiotics do a good job of actually decreasing the permeability of your intestinal lining. This is why probiotics are imperative for celiacs to take, wheat increases the permeability letting through all sorts of nasty stuff (like even more gluten) but these probiotics can help cut down somewhat on that. It's also been shown before that celiacs on average have absolute piss-poor gut bacteria populations compared to someone who's not affected by gluten. Since those little bacteria are an integral part of how your body absorbs nutrients they should be considered one of the most important "vitamins" you take.

    what probiotics do you all take? just curious....i was taking digestive advantage(lactose formula) for about 1.5 months....then just switched to align the other day. i know alot of them are trial and error if they even do work.....


  9. Hello,

    I was diagnosed with celiac 5 months ago and have been strictly gluten free and eliminated dairy as well, although I have it occasionally in processed foods. (I don't drink milk or eat cheese but I sometimes eat a lactose free organic plain yogurt.) All my supplements say they are gluten free on the bottles and I am careful about toothpaste, shampoo, lotion, lipstick, etc. Do I have to worry about cooking oils such as olive oil & canola oils being cross-contaminated? Oils & spices are the only things I can come up with as question marks. I had Marsh 3 severe damage so I know my healing will probably take longer than most. I have had some improvements with my anxiety, bloating, pain & fatigue, but I still have diarrhea/loose stools & constant stomach noises (rumbling, gurgling, etc.) which I've had since before diagnosis and it has not subsided. It gets worse right before my period. I have not lost any weight, which is amazing to me. Has anyone else with celiac experienced ongoing diarrhea after being gluten free? I feel like I will never have a normal b.m. again. Is it just going to take more time?

    Any insight would be appreciated.

    i have been gluten-free for 9 years and recently just got diagnosed with microscopic colitis b/c of ongoing bowel issues for the past 1-2 years. i can't remember that far back and how long it took me to get back to normal after going gluten free. i have just been focused on the past 2 years and my issues now. so, maybe it may take your body a little longer to get back to how it was before or see if microscopic colitis could be your culprit.


  10. I don't think you can start talking about refractory sprue when you are not actually following the gluten free diet. Give it a try :rolleyes:

    well, that is the diagnosis my dr. gave me....i told him about my few bites of pizza, etc. asked if he thought that would cause the villi to still be flattened and said no, he did not think so. i really did not think that little bit of "cheating" would either, but i guess so. thanks! i am going to be more vigilant in watching and asking about what i eat.


  11. Yes, all this is enough to keep your villi flattened. You are not describing minor cross-contamination here, but rather a lot of gluten in celiac terms. The butter WILL have crumbs, vertical toasters WILL have crumbs, colanders are almost impossible to really clean well, and the bite of pizza is guaranteed to cause problems. Even eating the toppings off regular pizza is a problem, because of all the flour in the bakers hands and in the air when the pizza is made.

    You need your own colander, your own condiments, and a zero tolerance policy for things like bites of pizza.

    yeah...i know... i really did not think all of that would keep the villi flattened...dr. did not this so either...but i will keep a better eye on all of this and i assume dr. will do another endoscopy at some point and we will see if it's any better. i am hoping in a strange way that my villi being flattened (to whatever degree) is because of this cross contamination and not to my body rejecting the diet...refractory sprue...you know?


  12. I experience that a lot before I also went dairy free. Are you by any chance also lactose intolerant? Maybe try eliminating dairy and see if that helps. Then try re-introducing it slowly and you may find certain items bother you while others do not. I hope it helps.

    i don't know if i am lactose intollerant...i am trying to stay away from dairy as much as possible....


  13. anyone out there get a gurgling/fizzy feeling on the upper left side, almost every day? i sometimes get it down near my rear end too...i know crazy but anyone know what it is? is it gas? is it something i am eating that does not agree with me? when i mentioned it to my dr. he said it was just the food traveling its course....i kind of get it but it should not do it every day and not do it all day and it at times is so darn loud!! it's not normal.


  14. i just got my results back from my colonoscopy a few weeks ago...i do have microscopic colitis and the biopsy of my duodenum looks "celiac" - i have been gluten-free for 9 years...so either the microscopic colitis is causing the "celiac" look to my intestines or something is going on....i am kind of nervous....dr. prescribed prednisone for 15 days....the first 2 days were great....no d. i actually have not had d since, but the first 2 days were better...not sure why- coincidence? he said i might not see results for 10 days but when the first two were good - it makes me upset! anyone out there that has taken prednisone for inflamation and how long did it take to "work"

    ok...for those of you out there that have celiac disease and microscopic colitis....do any of you have a gurgling/fizzy feeling in the upper left side of your abdomen, like under your breast/rib cage? i get it once in a while and it drives me crazy! want to know what it is. dr. has me on prednisone, but i don't know if it's working, well, it is, the frequency of going to the bathroom has certainly lessened, but i wanted and expected normal bm's! not yet anyway and it's been 7 days! it's this gurgling thing that has me upset too! any suggestions?