Update, With Some More Questions

[coldnight]

So, I haven't posted in a few weeks, I think. Anyway, I was dx'ed with severe IBS 9 years ago, took tons of medicine (9 lomotil, 120mg codeine, zofran, immodium, klonopin). I stumbled upon gluten free and felt a lot better within a week, this was several months ago. Right now I'm off all of the medicine, except the klonopin, which I'm just holding off on until I can step off it properly. I've stepped off everything else slowly and been completely off for a week now, which may not seem like long, but it's the longest I've been without medicine in 5+ years and/or not felt horribly sick all day.

Last time I posted, I felt kind of stuck, couldn't get past taking a small amount of lomotil. Well, after a while that become too much. I also couldn't eat corn, especially tortilla chips around that time, they just killed me. Now they seem to be ok, although too much of anything isn't necessarily wise.

From what I understand this fits pretty well with Celiac disease, I have no doubt if I eat gluten I will be -very- sick, it's happened but not too recently. Does this sound right to you? (It's very odd though, they did not see damage on an endoscopy, but I don't believe I ever had a full blood panel. Enterolab says I do not carry the main celiac genes, but they say I produce IgA in response to gluten, not sure how accurate that is.)

I guess I'm hoping someone with a similar scenario can tell me if this sounds right, I can function all day and don't feel incredibly sick, but I still don't feel... say.. tip top shape. I still ache, I'll still have cramping especially after eating (This might be due to the fact that I developed a habit of only eating dinner, no breakfast or lunch, so that it would lessen symptoms during the day, now dinner seems like too much food all at once?). But it's nothing like it was before, even without any medicine, there is definite dramatic improvement. I'm wondering how long this improvement takes. I'm not exactly positive how long I have been gluten free, I was for a while before I realized that's what it was, and then I slipped up and ate gluten several times after that. But minimally 3 months.

But the main thing I'm wondering, is does GI distress hang around and decrease over time? It has decreased a lot for me so far, which is great! I'm just curious to know if this is a pattern that is familiar to anyone with Celiac disease.

I expect increased improvement, I guess I just want some reassurance that things will indeed continue to improve, and any suggestions to speed that along.

Thank you again for all your help and information, if not for this site, and the helpful people on it, I would really be lost. No one ever mentioned Celiac disease to me, and I have been very sick a long time.

Ben

[flourgirl]

Hi Ben. the only thing I can tell you is that every body is different. Every body goes it's own pace in healing. Some people feel great relief in a relatively short time. Others take a very long time. Some see most/all of their symptoms dissipate.....others of us struggle with finding out just what it is that is causing continued symptoms. If you are feeling better.....that is truly wonderful! As you heal, you will feel better and better, if all of your symptoms are Celiac related. With a biopsy; damage is seen if the biopsy was taken from a damaged site...it's not foolproof.

I would say to stick with the diet, definitely! You've seen improvement enough to eliminate medicines!! Read everything you can, but keep in mind that not everything you read is absolutely the truth....be careful of where you are getting your information. Ask questions if things are confusing....lots of people here are so very helpful and will steer you in the right direction.

Keep in mind, too, that Celiac is not the cause of everything, and that the diet will not necessarily change everything. Good luck to you....sounds like you're doing all right.

[coldnight]

Hi Ben. the only thing I can tell you is that every body is different. Every body goes it's own pace in healing. Some people feel great relief in a relatively short time. Others take a very long time. Some see most/all of their symptoms dissipate.....others of us struggle with finding out just what it is that is causing continued symptoms. If you are feeling better.....that is truly wonderful! As you heal, you will feel better and better, if all of your symptoms are Celiac related. With a biopsy; damage is seen if the biopsy was taken from a damaged site...it's not foolproof.

I would say to stick with the diet, definitely! You've seen improvement enough to eliminate medicines!! Read everything you can, but keep in mind that not everything you read is absolutely the truth....be careful of where you are getting your information. Ask questions if things are confusing....lots of people here are so very helpful and will steer you in the right direction.

Keep in mind, too, that Celiac is not the cause of everything, and that the diet will not necessarily change everything. Good luck to you....sounds like you're doing all right.

Thanks, that is good advice. I plan to stick to the diet, I just wish I could stop feeling sick.. lol. I mean, granted, I've felt this sick and been on a load of pills... so there is improvement that I can be completely off them and feel better than with them. But I still feel sick and run down. I'm very impatient, I want to feel all better. =) Or at least know when to expect it.

[GFinDC]

Hi Ben,

You may still be getting a small amount of gluten in your diet or meds too. Spices are another area people need to be careful about. There are so many food products with added gluten. Some people have reactions to other foods also, like corn, soy, eggs, etc... So you may want to look into that.

You may benefit from taking some pro-biotics once in a while and also eliminating sugar for a while too. and or eliminating dairy. Really dairy is one of the first things to try eliminating in addition to gluten. Everything you drink can be considered a source of possible problems also, including tea, coffee, sodas, and alcohol.

It could be there is just 1 food, pill, drink left that is causing your symptoms to hang on. Could also be that you are not completely healed up yet also, and just need more time on the diet.

Sounds like you are on the right track though and making progress!

[coldnight]

Hi Ben,

You may still be getting a small amount of gluten in your diet or meds too. Spices are another area people need to be careful about. There are so many food products with added gluten. Some people have reactions to other foods also, like corn, soy, eggs, etc... So you may want to look into that.

You may benefit from taking some pro-biotics once in a while and also eliminating sugar for a while too. and or eliminating dairy. Really dairy is one of the first things to try eliminating in addition to gluten. Everything you drink can be considered a source of possible problems also, including tea, coffee, sodas, and alcohol.

It could be there is just 1 food, pill, drink left that is causing your symptoms to hang on. Could also be that you are not completely healed up yet also, and just need more time on the diet.

Sounds like you are on the right track though and making progress!

Yea, I've been on a ridiculously simple diet, rice and beef. I've been able to retry tortilla chips and they seem fine as long as they don't contain milk. I also take kirkman's pro-biotics, they seem to help a little bit. I don't have D, not really C (as long as I stay off medicine)... the main problem is cramping and just a raw feeling. My innards just feel raw like they've been scraped or something, abdomen just aches. I mean, it always has to some degree, codeine helped a lot, but since going gluten-free, I can't take it anymore causes C.

So, I'm trying pepto, just to see if it helps any. I take vitamins off and on, I read about people taking sublingual b-12 and such. Is there anything else you can recommend that might help?

Also, is the continuous kind of aching/raw pain fairly normal? I had it while on medication, but going off has made it worse, it could just be withdrawal, I have no idea how long it's going to take, having been on opiates for 5 years, now down to none, for me to feel somewhat normal again.

Thanks again, you guys/gals are a big help, your posts are comforting, I'm trying to be optimistic. =)

ben

[Bell]

Codeine can cause stomach pain - I'm not sure exactly what it does, but I found that if I took it for any length of time, then when I stopped I would have that awful raw feeling in my stomach. It took a good week for the rebound D (after codeine constipation) to go too. I hope it hasn't done any lasting damage to either of us

[GFinDC]

Hi again Ben,

One affect of celiac disease is malabsorbtion. When your intestines get inflamed and irritated they can't absorb nutrients properly. So celiacs can have low vitamin levels because of the malabsorbtion. The sublingual liquid B-12 is sometimes recommended because it can absorbed in the mouth, and avoid the malabsorbtion in the intestines. I was told by my doc to take extra vitamin D also, as my levels were low for that one.

Rice and beef sounds ok. I keep telling people to try quinoa because it has better nutrition than rice. Some pro-biotics do have milk in them, just something to watch out for if you are lactose intolerant or casein intolerant.

Healing happens at different speeds for different folks. A simple diet of home cooked food is a good way to go to speed the healing. But there is no way to know how fast it will happen for you as it depends on many things. I feel like I reached a more stable, better state after about a year of gluten-free. Although there were plenty of mistakes along the way in learning to avoid gluten. I also learned that I can't drink wine, either due to the yeast or sulfites, not sure which. I avoid soy because I think it is plain bad for people. And although I don't have a big GI reaction to dairy now IF I take a lactaid, I can't sleep well if I eat much of it. I also avoid most salt for blood pressure reasons, and use black pepper more in my food. Other people may learn they have reactions to corn, or soy, taters (nightshades), nuts eggs, etc. as well as the gluten. It can take a while as you are progressing to identify these other food issues. You may not be able to identify them (if you even have any) until you are somewhat healed up. It can be hard to tell what is causing a problem when there are more than one problem foods in the mix. But starting out simple and slowly adding new foods is a good way to go. Just be sure and verify everything you eat or drink while you are adding to your diet.

Have you verified your meds are gluten-free? It only takes one little thing with gluten in it to slow down the healing process. Good health to you Ben!

[coldnight]

Yea, that sounds pretty similar. Soy bothers me, even la choy which is supposed to be gluten free. So do tomatoes, I assume it's the nightshades. But that may be because healing is still going on. I guess the key is just to wait. It's not been too long since I dropped off all the medicine, Klonopin is the only thing I take. I've checked the vitamins and the probiotics. I seem to be getting gradually better, it's just sooo slow. I never thought there would be a point in my life where I was not tethered to lomotil and codeine or morphine or something like that again. Just now that I think I have figured it out I want to feel normal IMMEDIATELY. =)

Patience I guess, is what it's going to take. I actually feel somewhat better now, I think lomotil causes some withdrawal, I still have constant running nose and feel feverish. But I know I'm not sick, this has been going on for as long as I've been stepping off the opiates. I can't find anything that really says how long this should last. It's hard to even differentiate withdrawal from how I am really doing now. I know it must be quite a lot better, I was housebound more or less for about 4 years with IBS, then I started taking all the opiate-type drugs to compensate and be able to make it to work. I'm fairly sure I never had IBS though, still not officially celiac, I wish I could know that too, it would make waiting easier, if I knew for sure that was what was going on. All I know is that avoiding gluten was a dramatic improvement within a week, and then it's been a slow improvement since then.

I guess I'll just keep trying to be patient, maybe try some gluten-free vitamins and hopefully feel better in a month or two. Going off the medicine has just sucked... the balancing act of how much do I need today, how much will be too much, how much will be too little. At least now I don't need it at all, so that's amazing.

Thanks again for all the tips and helpful information. I had really given up on ever feeling better, and just resigned to taking as many drugs as I needed to feel functional. It's truly amazing that changing one little thing can make such a big difference, I wish they would suggest this to everyone they diagnose with IBS... just on the chance that it will work, regardless of tests, because if it does it's truly amazing.

ben

[New2008]

Hi again Ben,

One affect of celiac disease is malabsorbtion. When your intestines get inflamed and irritated they can't absorb nutrients properly. So celiacs can have low vitamin levels because of the malabsorbtion. The sublingual liquid B-12 is sometimes recommended because it can absorbed in the mouth, and avoid the malabsorbtion in the intestines. I was told by my doc to take extra vitamin D also, as my levels were low for that one.

Rice and beef sounds ok. I keep telling people to try quinoa because it has better nutrition than rice. Some pro-biotics do have milk in them, just something to watch out for if you are lactose intolerant or casein intolerant.

Healing happens at different speeds for different folks. A simple diet of home cooked food is a good way to go to speed the healing. But there is no way to know how fast it will happen for you as it depends on many things. I feel like I reached a more stable, better state after about a year of gluten-free. Although there were plenty of mistakes along the way in learning to avoid gluten. I also learned that I can't drink wine, either due to the yeast or sulfites, not sure which. I avoid soy because I think it is plain bad for people. And although I don't have a big GI reaction to dairy now IF I take a lactaid, I can't sleep well if I eat much of it. I also avoid most salt for blood pressure reasons, and use black pepper more in my food. Other people may learn they have reactions to corn, or soy, taters (nightshades), nuts eggs, etc. as well as the gluten. It can take a while as you are progressing to identify these other food issues. You may not be able to identify them (if you even have any) until you are somewhat healed up. It can be hard to tell what is causing a problem when there are more than one problem foods in the mix. But starting out simple and slowly adding new foods is a good way to go. Just be sure and verify everything you eat or drink while you are adding to your diet.

Have you verified your meds are gluten-free? It only takes one little thing with gluten in it to slow down the healing process. Good health to you Ben!

[New2008]

GFinDC:

I was so relieved to read your post to Ben. I am struggling so badly with my gluten-free diet that I am at a loss. It never realized how important the B-12 sublingual liquid is as I do have that at home and just don't take it. I also have tried to go DF, soy but I know I also need to cut out wine. I almost feel like all of my pleasures in life are gone if I can't at least enjoy a glass of wine. Judging from what you said and what I know I have to cut out wine, similar to the candidia diet. It is just a hard pill to swallow. I will be looking for support with this venture if you don't mind.

Great post!

Angie

quote name='GFinDC' date='Feb 24 2009, 10:04 AM' post='513175']

Hi again Ben,

One affect of celiac disease is malabsorbtion. When your intestines get inflamed and irritated they can't absorb nutrients properly. So celiacs can have low vitamin levels because of the malabsorbtion. The sublingual liquid B-12 is sometimes recommended because it can absorbed in the mouth, and avoid the malabsorbtion in the intestines. I was told by my doc to take extra vitamin D also, as my levels were low for that one.

Rice and beef sounds ok. I keep telling people to try quinoa because it has better nutrition than rice. Some pro-biotics do have milk in them, just something to watch out for if you are lactose intolerant or casein intolerant.

Healing happens at different speeds for different folks. A simple diet of home cooked food is a good way to go to speed the healing. But there is no way to know how fast it will happen for you as it depends on many things. I feel like I reached a more stable, better state after about a year of gluten-free. Although there were plenty of mistakes along the way in learning to avoid gluten. I also learned that I can't drink wine, either due to the yeast or sulfites, not sure which. I avoid soy because I think it is plain bad for people. And although I don't have a big GI reaction to dairy now IF I take a lactaid, I can't sleep well if I eat much of it. I also avoid most salt for blood pressure reasons, and use black pepper more in my food. Other people may learn they have reactions to corn, or soy, taters (nightshades), nuts eggs, etc. as well as the gluten. It can take a while as you are progressing to identify these other food issues. You may not be able to identify them (if you even have any) until you are somewhat healed up. It can be hard to tell what is causing a problem when there are more than one problem foods in the mix. But starting out simple and slowly adding new foods is a good way to go. Just be sure and verify everything you eat or drink while you are adding to your diet.

Have you verified your meds are gluten-free? It only takes one little thing with gluten in it to slow down the healing process. Good health to you Ben!

[GFinDC]

I guess I'll just keep trying to be patient, maybe try some gluten-free vitamins and hopefully feel better in a month or two. Going off the medicine has just sucked... the balancing act of how much do I need today, how much will be too much, how much will be too little. At least now I don't need it at all, so that's amazing.

Thanks again for all the tips and helpful information. I had really given up on ever feeling better, and just resigned to taking as many drugs as I needed to feel functional. It's truly amazing that changing one little thing can make such a big difference, I wish they would suggest this to everyone they diagnose with IBS... just on the chance that it will work, regardless of tests, because if it does it's truly amazing.

ben

Hey Ben,

Oh yeah better living through chemistry eh? I did some reading on the klonopin. Sounds like some people have a tough time when stopping that stuff. Sounds like tapering off it is a good idea.

Open Original Shared Link

I totally agree with you on the testing of people with IBS. I really think it makes sense to test a lot more people for celiac or gliaden antibodies. People with diabetes, lupus, fibromyalgia, rhuematoid arthritis, thyroid disease, schizophrenia, autism, poor typing skills, (ok not teh lsat one). There are many associated autoimmune diseases and conditions that celiac seems to trigger. And some people have silent celiac, with no gastro symptoms, so how do they get detected? Ugh, they probably don't in many cases. I hope that changes soon, because 1% of the population is a lot of sick people that could be helped!

Patience works wonders, so does being careful with the diet. It is not surprising to make mistakes though, as they hide gluten in so many foods. Good for you getting off the meds Ben!

[GFinDC]

GFinDC:

I was so relieved to read your post to Ben. I am struggling so badly with my gluten-free diet that I am at a loss. It never realized how important the B-12 sublingual liquid is as I do have that at home and just don't take it. I also have tried to go DF, soy but I know I also need to cut out wine. I almost feel like all of my pleasures in life are gone if I can't at least enjoy a glass of wine. Judging from what you said and what I know I have to cut out wine, similar to the candidia diet. It is just a hard pill to swallow. I will be looking for support with this venture if you don't mind.

Great post!

Angie

Hi Angie,

I hope I can be of some little help, although I am not a doctor or anything, just another person who is learning by being there. The thing with wine is that some of it has gluten in it also. That may sound weird, but they sometimes use it in the process of making the wine or in storing it. I had trouble with my feet and ankles swelling over a period of time when I was drinking a little wine before bed. Anyhow, I stopped it for 3 or 4 months and then decided to try it again. Same thing happened after a little while so I stopped it again. Not everybody has the same food reactions though. There was an article in the CS newsletter not long ago about celiac and oats. they said that research shows that about 25% of celiacs have antibodies to oat protein also, when they are first diagnosed. But after they go gluten-free those antibodies seem to disappear. So the food reactions can be somewhat variable.

I found I did much better gluten-free wise once I quit trying to read labels on foods. I just quit buying most foods in boxes etc. I make all my food at home usually. I still have made mistakes even doing that. Spice mixtures have got me a few times, so I quit using mixes and just use single spices. Rice Dream gluten-free milk got me once too. Turns out it is not gluten-free although they label it as gluten-free. I actually like gluten-free now, as I spend less money on food than before, and less time cooking.

Oh, as far as pleasures go, I recently found a recipe for microwave peanut brittle on the web. I make various versions of it with lots of seeds and raisins and fruit bits added in. Makes a fine alternative to store bought candy, and healthier to eat too. Takes a good 10 minutes to make it though.

Open Original Shared Link

.

Anyhow, welcome to the gluten-free diet!

[coldnight]

Hey Ben,

Oh yeah better living through chemistry eh? I did some reading on the klonopin. Sounds like some people have a tough time when stopping that stuff. Sounds like tapering off it is a good idea.

Open Original Shared Link

I totally agree with you on the testing of people with IBS. I really think it makes sense to test a lot more people for celiac or gliaden antibodies. People with diabetes, lupus, fibromyalgia, rhuematoid arthritis, thyroid disease, schizophrenia, autism, poor typing skills, (ok not teh lsat one). There are many associated autoimmune diseases and conditions that celiac seems to trigger. And some people have silent celiac, with no gastro symptoms, so how do they get detected? Ugh, they probably don't in many cases. I hope that changes soon, because 1% of the population is a lot of sick people that could be helped!

Patience works wonders, so does being careful with the diet. It is not surprising to make mistakes though, as they hide gluten in so many foods. Good for you getting off the meds Ben!

I cannot find any hidden gluten in my diet. I check everything as much as possible, on the web, call them. I've been eating a very limited diet for a few months, and it has helped, but I still feel pretty sick at times. I'm hoping that is just coming off the lomotil, today I feel terrible, I'm not sure if that's still lomotil, or just ebb and flow. Anyway, yea, I've missed some doses of klonopin, it's kind of crazy, mind races. I'm saving that for last, it doesn't seem to have a huge GI effect, and I don't want to try to step off two things at once. Anyway, sorry to complain... today is going to be terrible though, i feel rough. Feels like trying to quit smoking, depression maybe, not sure... just general bad mood and ill stomach.

I think this is still the lomotil/codeine, I wish I knew how long it lasted. From what I understand it takes a long time to build up tolerance, at least in the intestines, to opiates. I've heard it related to the pupils, even someone who has taken them for a very long time will have small pupils because the tolerance builds so slowly there. I hope that doesn't mean the reverse takes just as long.

--edit--

one more thing, have you ever heard of people fasting? Just to give themselves a break? I think I know what I did, think I ate too many tortilla chips. I've been eating them fine, but I think it's just too many days in a row, but who knows. I'm tempted to just fast for a couple days, not sure if that is common?

[coldnight]

Codeine can cause stomach pain - I'm not sure exactly what it does, but I found that if I took it for any length of time, then when I stopped I would have that awful raw feeling in my stomach. It took a good week for the rebound D (after codeine constipation) to go too. I hope it hasn't done any lasting damage to either of us

It usually helps me, I think the upset it causes, for me anyway, is the 500mg of tylenol in it. (It's funny at work I often hear people talk about being on 500mg of lortab... it's usually 5/500 or 7.5/500.) My codeine is T3s or T4s, so 30 or 60mg of codeine per 500mg of tylenol, and I usually take two, that's a lot of tylenol, probably not terribly good.

For a very short time I was prescribed just codeine, no tylenol, the pills were tiny and round. I don't remember it having the same rebound effect. Of course, I took T4s for years, at least 2 a day at 120mg, so the rebound only happened when I cut down.

[sibilate]

one more thing, have you ever heard of people fasting? Just to give themselves a break? I think I know what I did, think I ate too many tortilla chips. I've been eating them fine, but I think it's just too many days in a row, but who knows. I'm tempted to just fast for a couple days, not sure if that is common?

[GFinDC]

one more thing, have you ever heard of people fasting? Just to give themselves a break? I think I know what I did, think I ate too many tortilla chips. I've been eating them fine, but I think it's just too many days in a row, but who knows. I'm tempted to just fast for a couple days, not sure if that is common?

I think fasting is a good idea Ben. Once in a while anyway. I think the idea of giving the body / GI system a break is a good one. Weekends are the time to do it I think, since it can be tiring. Don't overdo it though! Have you thought about a corn intolerance? It could be your system doesn't like corn. Or the corn chips make be cc'd during manufacture also. You could try a different brand that is known gluten-free and see if there is a difference. Or eat some corn and see if you react to it.