Bowel Issues

[willabec]

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!!!

[cassP]

i still have bowel issues if im consuming too much dairy or caffeine. i also have fructose malabsorption-> but whilst consuming fructose gives me excruciating intestinal cramps- it usually makes for great BMs. (unless the fructose/fructans come in the form of overdoing the salad greens.)

[ravenwoodglass]

You may have an additional intolerance. You may want to eliminate dairy and soy and see if that helps. If it does then add them back in one at a time for a week or soy and see if the symptoms reoccur. You could also start doing a food and bowel diary and see if after a while you can see a pattern. Intolerances can have delayed reactions so the pattern may originate with something you ate a couple days before and a diary can help you see the pattern.

[trents]

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!!!

What's the status of your gallbladder?

[willabec]

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?

[dilettantesteph]

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.

[willabec]

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.

[dilettantesteph]

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.

[willabec]

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!

[dilettantesteph]

Some of us are so sensitive that we have to get extremely nuts about avoiding cross contamination.

[ravenwoodglass]

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.

Actually the 1% could very well cause your issues. Gluten causes antibody reactions and even small amounts will trigger them. You may find if you eliminate that 1% that your D resolves.

[dilettantesteph]

Actually the 1% could very well cause your issues. Gluten causes antibody reactions and even small amounts will trigger them. You may find if you eliminate that 1% that your D resolves.

Ditto. Even 0.1% for that matter.

[Gemini]

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!

It may have zero to do with CC,as everyone always seems to fall back on, but you may have collagenous colitis. This is extremely common in Celiacs and has only recently been discovered and added to the AMA repertoire. I know a few Celiacs who had the same problem...always followed the diet to a T and just had ongoing bowel problems that never went away totally. I am very sensitive and very diligent about my diet and, thankfully, have no other problems except gluten and dairy. I have had zero bowel issues since going strictly gluten free/ dairy free and that's what should happen, if you are strict with the diet. Almost everyone I know who has ongoing problems ended up having another disease state going on or had other food intolerances. They kept blaming cc and that wasn't it at all. I am not saying it doesn't happen but, realistically, another issue is far more likely. CC can be easy enough to control if you aren't eating a lot of processed foods.

Colitis is diagnosed via a biopsy of the large intestine...the inflammation is only visible and apparent under a microscope and not to the naked eye...like Celiac of the large bowel. Your symptoms sound like that but with the testing coming up, they should be able to pinpoint something. Good luck to you and I really hope you can nail this down and feel better.

[T.H.]

Almost everyone I know who has ongoing problems ended up having another disease state going on or had other food intolerances. They kept blaming cc and that wasn't it at all. I am not saying it doesn't happen but, realistically, another issue is far more likely. CC can be easy enough to control if you aren't eating a lot of processed foods.

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.

[willabec]

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!

[Gemini]

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.

I am an extremely sensitive Celiac and react to very low levels of gluten and yet, have not had any issues with what you have listed as possible contaminates to our food supply. I just think these are non-issues for the vast majority of anyone with Celiac, regardless of how sensitive you are.

On-going issues, while following a strictly gluten-free diet, point all too often to another food intolerance or bowel disease or syndrome.

All of what you listed as possible contaminates at farm level have never been listed as a possible danger from any Celiac foundation I have read up on.

These people make it their mission, through painstaking processes, to ensure their information is up to date and I cannot imagine that any medical group or Celiac foundation would omit such information if it were true. Mulches are used for farming and most certainly get washed off well before reaching the market. I have a hard time finding soap now which contains gluten, never mind one used for washing produce. Besides, it's all rinsed well so how much soap on a regular basis do you feel you are ingesting, that may possibly contain gluten? The coatings for produce do not contain gluten...that's an urban myth. That's right up there with gluten in wine. I eat enough produce to choke a horse and have never reacted once to any fruit or veggie I have eaten....if there were gluten in there on a regular enough basis, I would know it. It is also easy enough to find grains which are certified gluten-free so the problem of CC, unless you buy from General Mills or Quaker, is not going to be there.

I think this kind of information just adds confusion and misinformation to people who are newly diagnosed and makes the diet harder to navigate. There are plenty of reasons to question a food source before you indulge but wondering what kind of mulch used in the growing process isn't one of them...unless you have severe food allergies and are worried about anaphylaxis.

[dilettantesteph]

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.

[willabec]

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.....

[dilettantesteph]

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?

[willabec]

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.....

[dilettantesteph]

I am sure that you are following the diet to a T for someone who isn't sensitive to extremely low levels of gluten. The fact that you are still experiencing symptoms might indicate that you are one of those who is sensitive to those low levels. If you are like me, you should be able to notice an improvement within a couple of weeks on a whole foods diet, and then you could decide whether or not you want to pursue this course. You would need to stop eating out and stop eating processed gluten free foods. I only eat nuts that I shell myself. With grains, I sort and wash first. Seafood, I get them to take it out of a fresh container. I don't eat farmed seafood. For meat, I buy the bulk packages shrink wrapped at the meat processing plant. For dairy, I have a farmer who pasture raises his cows and supplements them with non gluten grains. Eggs too. My symptoms are really serious so I have to go to these extremes, or I basically can't leave the house. I hope you can get things worked out.