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  1. I am fairly new to Celiac (only 3 months ago was diagnosed). I am doing some research as my GI doctor has me scheduled for a Colonoscopy the day before Thanksgiving (next week). My symptoms have changed/worsened since going gluten free on the diet. Added to the "usual" Celiac symptoms, adding extremely elevated liver enzymes, liver (palpated) is enlarged-which is extremely painful, very loose stools and abdominal cramping that varies from "discomfort" to "stabbing and unbearable" feels as if a sword is passing through my intestines. It almost feels like gas pains, but with less severe bloating.

    I am being tested for AutoImmune Hepatitis and having the Colonoscopy for Microscopic Colitis.

    Does anyone have any tips on reducing the abdominal pain until next week? Each day it grows worse, to the point that I am scared to eat. Of course, my GI doctor doesn't return my calls, so I am trying to find ways to cope with it until he does..

    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"

  2. The celiac specialist in my GI group thinks that refractory sprue comes from celiacs who are sensitive to extremely low levels of gluten. He thinks that small amounts of cc in their diet can get them, and that if only they can get their diet clean enough, they can get healthy. I believe that I am in this category. I have problems with those things that TH mentioned. Even a whole foods diet causes me problems. I have to be extremely careful about what I eat and my life consists of elimination diet after elimination diet to figure out enough foods that I can eat. I question farmers at market, and phone companies about their procedures. I hope that you can find a way to get healthy too.

    Would you like to share what you have been eating?

    i thought i was following the diet to a T, but maybe somehow ingesting gluten without really knowing it....i do eat alot of homemade gluten-free foods, but i do go out to eat, and if i do i ask....alot of restaurants now have gluten-free menus, so i will order off of that....i don't know....i will have to see.....dr. put me on prednisone to treat both issues....it will be a 15 day treatment and i guess we will go from there....did not really discuss the next step....i am very scared and very nervous. i find it would be impossible to be 100% gluten-free.....

  3. Although you are extremely sensitive, it is certainly possible that there are celiacs out there who are more sensitive than you and do have to worry about things like this. They wouldn't necessarily be included in warnings from major celiac organizations since they wouldn't apply to most celiacs.

    well, just found out that i have lymphocytic colitis and non-responsive or refractory sprue....not sure which and not sure if they are the same thing....some things i see on line indicate they are two different issues. i am very nervous - especially about the refractory sprue- not anything good about it on line.....

  4. Bumping this up for comments.

    Any other members diagnoed with this?

    I had my colonscopy last week and am expecting the results soon.

    i had mine as well and waiting for the results but on the paper that they sent me home with....that things looked normal, it also said colitis not present...how can they put that on the paper if it can only be determined by looking under a microscope?

  5. I think that many of us have other issues on top of the celiac disease, but I also think it's not always safe to assume it's not CC unless one has completely eliminated gluten from the diet.

    For myself, I was the other way around. I kept blaming other foods for my problems and it was actually CC. My diet dropped to nearly nothing - and I didn't react with this diet - but trying to add in new foods made me so, so sick. It seemed like nearly everything I ate was making me ill, and in my diet the only processed foods I ate were an organic oil, an organic amaranth flour, and organic, whole grain quinoa. My issue most definitely was CC, as I discovered when I finally managed to find non-contaminated versions of the foods that were causing me problems before. If there is no possible way for a food to have touched gluten, so far, I seem to be okay with it (although we're still slowly testing this out, so perhaps I will discover other issues along the way, too).

    I would have to respectfully disagree that CC is easy to control without processed foods, at least unless you are including oils, flours, shelled nuts and beans, and whole grains in your list of processed foods. That just hasn't been my experience.

    Now, I DO think that avoiding processed foods makes it relatively easy to keep the CC down to tolerable levels for most celiacs I've met. That I would say it very true. But CC from gluten if you need to eliminate it entirely is VERY hard. I've run into this both with myself and with a friend who is terribly allergic to wheat.

    As an example, mulches used on veggies often contain parts from gluten containing grains and go on to contaminate the vegetables resting on them. Sprays and coatings used on fresh veggies and fruits can have gluten (organic and not). Soaps used to wash machinery that processes any type of food, or soap used on fruits and veggies can often have gluten. The harvesters, trucks, and mills used for gluten-free grains are often used for gluten containing grains as well. They may be washed in between, yes, but there is frequently some residual gluten remaining.

    Again, most people I know don't have an issue with this low level of gluten - certainly most people in my family who are celiacs do not. But some of us most definitely do. I know in my family, we've had to research and call companies and farms, to figure out which foods are safe for which level of sensitivity to gluten that we have.

    wow! i will have to look into that....seems like alot of work! i had my testing done on tues....nothing out of the ordinary according to the dr. all looked good. he did take some biopsies while he was in there....so just waiting on the results. i do hope he finds something just so i can have some sort of an answer....because if he says everything looks good, i am back to square one to try and figure out what the heck is going on with me. it just boggles my mind!

  6. If I eat something slightly contaminated only once a week, that can be enough to give me bowel issues every day. I also can have the one normal one followed by a terrible one 10 or 20 minutes later. Even one so bad that I can't make it to the toilet.

    thanks! sorry, but at least i am not the only one. i must say i believe i follow the diet 99%. i really doubt that that 1% if that would do something like this. like yesterday- had a great day! today (at least this afternoon- the bad bowels always seem to happen in the afternoon, usually after lunch- this afternoon, awful!!) i really hope the colonoscopy/endoscopy will either tell me something or rule something out. if it rules something out i guess that is good, but then i am back to square one trying to figure this darn thing out!! it is really getting to me and getting me down!

  7. I still have bowel issues sometimes. I chalk it up to gluten cross contamination of my foods. As I get more careful, I get fewer bowel issues. I avoid almost all processed foods now.

    i understand that....but it is literally every day, no matter what i eat. some times when i go it decent and then the next time (could be in the same day) it's horrible! so it's either a new food intolerance or another issue/disease going on.

  8. What's the status of your gallbladder?

    trents- not sure....went to see my gi dr. on friday....gave him the list of all of my symptoms, i mentioned my gallbladder, he seemed to dismiss that. he wants to do an endoscopy/colonoscopy and then a lactose intollerance test. i don't have the typical gallbladder symptoms, the occasional pain/discomfort in various areas of my abdomen, and just the wacky bowels. i sometimes think it is my gallbladder, but i don't know. that might be my next test- a hida scan right?

  9. i have been gluten-free for almost 9 years....having bowel issues for a while now. can anyone out there tell me (sorry to be graphic) why one bm can be good and the next one (may only be 10 min. after the first) be completely different and disgusting?!! dr. has no idea. going for a colonoscopy and endoscopy in november. but this has been bothering me for quite some time - i just don't get it!!!

  10. I've been seeing quite a few posts related to not getting better on the gluten free diet and wanted to tell my experience to give some hope. I'm into my 3rd year gluten free now. The first 3 months I had big improvements (I lost quite a bit of weight from having daily diarrhea) but still had problems so I eliminated dairy and for the next 9 months did even better but still had days of unexplained big D blowouts. I kept a food journal but it didn't make since that I was okay with something one day and not the next. Reading this forum showed me that some people had problems with soy so I thought I would be tested with soy. I used enterolab and just went ahead and did the gluten, casein, soy, malabsorption ect even though I already had a gluten intolerant diagnoses from my general practictioner and later after a miserable gluten challenge a positive biopsy, to see if I still showed antibodies. I did but very low (14 when their positive is 10, I had been almost 2 years gluten free)and almost normal malabsorption. Casein was very negative. Soy tested high so I asked my Gastro doctor and he said go ahead and remove it and see. Again, it helped but STILL had unexplained episodes of big D.

    My brother in law who is also celiac (positive biopsy and positive Herpetiformis Dermititis biopsy)told me that his doctor believes he has a problem with fructose malabsorption and that it sometimes overlaps with celiac. I did some digging on FM and it was like a light bulb going off! I went on a low fructose diet also including fructans (onions,artichokes, asparagus ect) and now I'm 99% better! FM is not like celiac to where I can never have fruit, honey, ect every again or worry about cross contamination, its all about personal threshold and how much per sitting. Some with FM have severely low threshold for fructose. Lucky for me, I just have to be careful with how much fructose I have at one sitting and never within 3 hours apart. Also, I've found onions to be my enemy but still cook with them for flavor then don't eat the flesh where the fructose resides.

    In a nut shell if you are still not doing any better after being strictly gluten free for a few months or more, keep digging. Dairy, soy, and fructose seem to be the most common intolerances but everyone is different and could react to nightshades, corn ect. Happy healing!

    that's me! i have been gluten-free for 8 1/2 yrs. and for the past 1-2 years (could be longer i just don't remember) things seem to have gotten worse. had a stool sample, came back with a little more fat than usual. dr. thought a pancreatic insufficiency. took a supplement and it helped fora little while but then seemed to stop. i mentioned FM to him prior to all of this and he said that being gluten-free has enough restrictions that i should not try that. my frustation lies in the fact that my bowels are good in the a.m. and after dinner but after lunch (about 90% of the time) i end up in the bathroom -maybe once but maybe 3-4 times. i feel it is a dietary/digestive issue. if it is FM i would not know where to start to see if that diet will help. any helpful suggestions? thanks.

  11. Hi all- i have not been diagnosed with refractory sprue, but i am just curious who out there has it and who out there still has symptoms despite following a gluten free diet? for the past year or so, my "issue" seems to be the worst after lunch...somtimes going 2-3 times with varying consistencies (sorry). based upon my internet diagnosing, i may have colitis, refractory sprue, ibs-d and who knows what else. my recent blood work (just checked to see what the celiac levels were) came out great! so i am hoping it is not refractory sprue. my weight has stayed the same (well, in 1 yr. i only lost 2-3 pounds which i don't think is a big deal)- it is just the darn bowel issues. one day can be decent, one time can be decent and the next and the next, goes down hill....thanks for any input you may have. called dr. to schedule a colonoscopy and endo....

  12. I am looking for one too! What part of CT are you in? I just had a positive blood test and need and endoscopy and was referred to Jennifer Kauffman out of Rye/Harrison, but has affiliations with Greenwich Hosp. I am kind of looking for more refereneces also. I am new to this!

    my dr. is in glastonbury, bloomfield and a few other locations- affiliated with hartford hospital....his name is dr. theodore loewenthal....good luck! my mother also sees a dr. in that same practice, i believe his name is dr. slater.

  13. He really couldn't think of ANYTHING that causes left lower quadrant pain?!

    Um, how about diverticulitis? That's a pretty common disorder that causes left lower quad pain. :rolleyes:

    Have you been scoped?

    no, not yet....the last time i was scoped was when i got the celiac diagnosis....(8 yrs. ago!) looking to schedule a colonoscopy and upper endo. soon though! hopefuly those will lead to some answers!

  14. I've just started the low FODMAP diet which eliminates or limits foods that ferment in the stomach due to an excess in bacteria and the gut's inability to absorb certain foods. It's being pioneered in Australia and Monash University is studying various foods. My Gastroenterologist recommended it and it's proven to help so far. You can have certain amounts of starchs, veggies, fruits and dairy at one time - this way the gut has time to process everything and doesn't leave a lot for the bacteria to snack on. The diet eliminates certain types of fruits which have higher fructose than glucose such as watermelon and juice if you have fructose intolerance. I think I'm intolerant to some fruits and am starting from square one. I'm not eating any fruits at the moment but am looking forward to reintroducing them. I can forward you a document from Sue Shepherd (Shepherd Works) that provides up to date info. I'm working with a dietician at Diet Solutions (they also work with Monash) and they conference via Skype. Let me know if you're interested and I can email it!


    Thanks.....if you could email it to me that would be great! not sure how to go about giving you my email address though!

  15. For me, keeping a food diary along with writing down symptoms for the day, really helped me figure what else was going on. I was able to see that the mornings I was eating a gluten free waffle with peanut butter and blueberry preserves was giving me a D day. Also at Thanksgiving I had a severe reaction. Everything was gluten free but I had sweet potato casserole, small piece of pumpkin pie and a small piece of pecan pie plus a gluten free chocolate chip cookie. Around 3 in the morning I had severe D, hot and cold flashes, my ears were ringing and was dizzy. I have medical people in the family and they suggested that I had a high fructose intake (especially since I put corn syrup in the pecan and sweet potato casserole). So I did a ton of research and now watch my fructose and know what I can have and not have based on my food journal. Hope you find your answer I know how tough it can be trying to be your own detective.

    yes, it is...i am keeping a food diary but i cannot figure out what, if anything is affecting me...my dr. says not to bother, not sure why, but it makes me feel better doing it for some reason. i also would have no idea how long it would take for something to affect me once i ate it?? 1 day, 2 days, etc.??? that's what is bothersome!

  16. I used to think that I still had IBS riding along with the celiac but then found out that I also have a problem with fructose. I can only eat so much fructose in one sitting or I greatly pay for it with the big D. Fruit, applesauce, and anything with High fructose corn syrup and corn syrup solids will get me if I have too much. everyone is different on what they can handle. If you google Sue Shepard fructose malabsorption you will get many hits to learn about it.

    how did you find out you were sensative to too much fructose? i have celiac but now have loose stools/D (sometimes) and it has been going on like this for about a year or so.....maybe it is something else other than IBS-D??

  17. I don't know why this would happen but I am going to suggest you see your doctor if you haven't already. It might be a good idea to have stool samples done from the different voids.

    i have done stool samples twice....one showed a little more fat than normal and that is it, the second came back normal...but i know something is going on. celiac panel blood work came back normal as well. will most likely have colonoscopy done and another endoscopy.....kind of nervous though!!

  18. Ok...i have posted a few times the last week....just one more question, any ideas as to why one time my bowel movements will be ok, or decent (not normal but what i consider ok seeing i have been having issues for a while) and then the same day, a few hours later, it can be loose and then i go again and then it's yellow and frothy? why so many different consistencies in one day?????

  19. As you travel through the gluten free lifestyle, you will notice that your reaction time will vary. That makes it very difficult to pin point and issue. And sometimes, you never know. And everyone is different. You will learn your own clock, once you are healed.

    You may be one who reacts to the slightest bit of cross contamination...at home, work or elsewhere.

    well, i was diagnosed 8 years ago and on the gluten-free diet since then...i just don't know why the past 1-2 years "things" have gotten like this....it is making me nervous!