Newbie Questions

[Drama Queen]

Hi, everyone. I've been having intestinal issues for 4+ years, but have only been to the dr. about in in the past year.

Basically, I have diarrea almost all the time (occasionally it's solid, but not often), and almost always within 15 minutes or so after eating. It doesn't really seem to matter what I eat. Spicy foods and dairy does seem to make things worse (I do have a dairy allergy).

The dr. can't figure out what is wrong, so he's treating the symptoms. I'm taking Bentyl (for the intestinal spasms), 2 Fibercon/daily, a multi-vitamin (w/ iron), and Prilosec OTC (I also have reflux, but it seems to help "bind"). I will even take Pepto Bismol sometimes, but all that seems to do is turn the diarrea black.

I also deal with some depression/stress issues (taking Lexapro), acid reflux, major fatigue (I can easily sleep 12 hrs. & need a nap after being up a few hours), and some unexplained bone pain (arms & legs). After reading about Ciliac a bit online, I see that many/all of these symptoms can be associated w/ it.

The dr. sent me for a colonoscopy a couple of months ago, but it was negative. At this point, he's trying to treat the stress w/ Lexapro, thinking it may all be stress-related. I think that could be some of it--and the Lexapro seems to be helping with that, but I don't think that's the whole issue, since the diarrea hasn't stopped or even slowed down. It's to the point where it's waking me up in the night now several times a week.

I just feel so weak on the days when the diarrea is bad. I don't have cramping or stomach aches, really...just this urgency of "gotta' go NOW!" Especially after eating.

I did try doing a lower carb diet a while back & it seemed to clear things up a little, so maybe it is a gluten thing. I was following the Diabetes Carb Counting diet (I'm not diabetic, though). Does it make sense that this diet would have helped my intestinal issues?

Does it sound like I should get tested for Ciliac Disease? I never even thought of this until a friend mentioned the idea to me the other day.

Any help, ideas, suggestions, or comments would be greatly appreciated!

Thanks!

[jayhawkmom]

Hiya! Generally speaking.... doctors don't do a colonoscopy to look for Celiac, the correct test is the Endoscopy, as the villi damage is noted to be in the small intestine. I just had one yesterday....and it wasn't bad at all.

You'll read a lot of people here will tell you to just go ahead and TRY a complete gluten-free diet. If you really do have gluten issues, you should be NO gluten, not LOW gluten - because any amount will set the "bad stuff in motion."

You don't have to be diagnosed with anything to TRY a gluten free diet. No wheat, rye, barley, or oats. We've been at this for 4 months with our daughter and I'm STILL trying to get the hang of it. It's not easy, but she's having a very positive response, so we keep truckin' away!

Lots of luck to you! I know you'll get a LOT of good recommendations from the folks here, who are WAY more than generous with their suggestions!!! =) =) =)

[IrishKelly]

Hi, everyone. I've been having intestinal issues for 4+ years, but have only been to the dr. about in in the past year.

Basically, I have diarrea almost all the time (occasionally it's solid, but not often), and almost always within 15 minutes or so after eating. It doesn't really seem to matter what I eat. Spicy foods and dairy does seem to make things worse (I do have a dairy allergy).

The dr. can't figure out what is wrong, so he's treating the symptoms. I'm taking Bentyl (for the intestinal spasms), 2 Fibercon/daily, a multi-vitamin (w/ iron), and Prilosec OTC (I also have reflux, but it seems to help "bind"). I will even take Pepto Bismol sometimes, but all that seems to do is turn the diarrea black.

I also deal with some depression/stress issues (taking Lexapro), acid reflux, major fatigue (I can easily sleep 12 hrs. & need a nap after being up a few hours), and some unexplained bone pain (arms & legs). After reading about Ciliac a bit online, I see that many/all of these symptoms can be associated w/ it.

The dr. sent me for a colonoscopy a couple of months ago, but it was negative. At this point, he's trying to treat the stress w/ Lexapro, thinking it may all be stress-related. I think that could be some of it--and the Lexapro seems to be helping with that, but I don't think that's the whole issue, since the diarrea hasn't stopped or even slowed down. It's to the point where it's waking me up in the night now several times a week.

I just feel so weak on the days when the diarrea is bad. I don't have cramping or stomach aches, really...just this urgency of "gotta' go NOW!" Especially after eating.

I did try doing a lower carb diet a while back & it seemed to clear things up a little, so maybe it is a gluten thing. I was following the Diabetes Carb Counting diet (I'm not diabetic, though). Does it make sense that this diet would have helped my intestinal issues?

Does it sound like I should get tested for Ciliac Disease? I never even thought of this until a friend mentioned the idea to me the other day.

Any help, ideas, suggestions, or comments would be greatly appreciated!

Oh let me tell ya sister ...i had the same digestive problems for the past four years (how ironic) but add in heartburn, headaches, and leg muscle aches. I went to an actual GI dr. who claimed it was all "stress related" and it was "irritable bowel induced by stess"...then i finally got tired of dr.'s who are trained in the U.S. medical schools who are only able to treat the symptons with drugs and etc... Anyway, to make a long story short, i finally went to see a holistic dr. 3 months ago who immediately said it was glutent intolerability and that he would do a blood test but that half of the time those come back negative even though you can't tolerate wheat. Well, the test came back negative but he started me on the diet immediately after taking the test because he was certian that was my problem. Needless to say, it is my problem, once i started the diet 6 weeks back i immediately started to notice a difference within the first week or two. However, because of the four years of not knowing and still eating the gluten i am now temporarily dairy free also because of the damage i did to my intestines (which if you research this and ask alot of us on here as well you will see). The ville (i think it connects the stomach to the large intestine?) has hairs in it that are now flattened because of the years of gluten damage, and the dairy which has lactose and casein (casein is the protein in dairy just like gluten is the protein in wheat, barley, oats, and rye) aggravates the healing process of this. Since our intestines are always trying to re-heal because of the damage the lactose irritates it...producing more diarrhea. Anyway, i bet with your symptons a gluten and dairy free diet will heal you and it may take up to six months...you should definitely try it for a month and see what happens!! Sometimes it's hard to find a dr. that actually understands all of this. And alot of times they want to give you tests that you don't even need, or aren't even going to give you the results you need or are looking for. I too had an unecessary (partial) colonoscopy...and low and behold my holistic dr. was right withought any invasive tests. Your absolute best test is trying the diet...no test is more accurate than that!!!

Thanks!

Hi, everyone. I've been having intestinal issues for 4+ years, but have only been to the dr. about in in the past year.

Basically, I have diarrea almost all the time (occasionally it's solid, but not often), and almost always within 15 minutes or so after eating. It doesn't really seem to matter what I eat. Spicy foods and dairy does seem to make things worse (I do have a dairy allergy).

The dr. can't figure out what is wrong, so he's treating the symptoms. I'm taking Bentyl (for the intestinal spasms), 2 Fibercon/daily, a multi-vitamin (w/ iron), and Prilosec OTC (I also have reflux, but it seems to help "bind"). I will even take Pepto Bismol sometimes, but all that seems to do is turn the diarrea black.

I also deal with some depression/stress issues (taking Lexapro), acid reflux, major fatigue (I can easily sleep 12 hrs. & need a nap after being up a few hours), and some unexplained bone pain (arms & legs). After reading about Ciliac a bit online, I see that many/all of these symptoms can be associated w/ it.

The dr. sent me for a colonoscopy a couple of months ago, but it was negative. At this point, he's trying to treat the stress w/ Lexapro, thinking it may all be stress-related. I think that could be some of it--and the Lexapro seems to be helping with that, but I don't think that's the whole issue, since the diarrea hasn't stopped or even slowed down. It's to the point where it's waking me up in the night now several times a week.

I just feel so weak on the days when the diarrea is bad. I don't have cramping or stomach aches, really...just this urgency of "gotta' go NOW!" Especially after eating.

I did try doing a lower carb diet a while back & it seemed to clear things up a little, so maybe it is a gluten thing. I was following the Diabetes Carb Counting diet (I'm not diabetic, though). Does it make sense that this diet would have helped my intestinal issues?

Does it sound like I should get tested for Ciliac Disease? I never even thought of this until a friend mentioned the idea to me the other day.

Any help, ideas, suggestions, or comments would be greatly appreciated!

Thanks!

Oh, and yes, the low carb diet would sound somewhat right since eliminating carbs means eliminating lots of gluten! (less gluten=less diarrhea)

[Drama Queen]

Oh, and yes, the low carb diet would sound somewhat right since eliminating carbs means eliminating lots of gluten! (less gluten=less diarrhea)

I did forget to mention the migraines. I have had them for about the same length of time. The doctor tried medicines, then physical therapy--nothing. He came to the conclusion that my migraines were triggered by stress/tension headaches. I figured I should address the root cause & saw a counselor, which helped. The migraines aren't as frequent, but I still get them, even when I'm not stressed.

The doctor seems content to treat my symptoms and doesn't seem to be looking for a root cause of my problems. The colonoscopy wasn't done to find out about celiac disease, it was to rule out other stuff that could have been going on. I'm going to have to make another appointment, I guess and TELL him that I want the blood tests. Sometimes you just have to be pro-active.

[IrishKelly]

I did forget to mention the migraines. I have had them for about the same length of time. The doctor tried medicines, then physical therapy--nothing. He came to the conclusion that my migraines were triggered by stress/tension headaches. I figured I should address the root cause & saw a counselor, which helped. The migraines aren't as frequent, but I still get them, even when I'm not stressed.

The doctor seems content to treat my symptoms and doesn't seem to be looking for a root cause of my problems. The colonoscopy wasn't done to find out about celiac disease, it was to rule out other stuff that could have been going on. I'm going to have to make another appointment, I guess and TELL him that I want the blood tests. Sometimes you just have to be pro-active.

You totally have the signs!! Just please remember that even if he does do the blood test there is a very very high chance it will come back negative...but you actually need to try the diet to see...you sound exactly like me, and trust me if you read over everyone's test results under their names (when they're posting) you will see this is sooooo common of a problem. If that dr. tries to tell you to rule it out even after he gives you a test, please put your fate into your own hands like many of us have done. I'm just very lucky i went to a holistic dr. who didn't need to see the "positive bloodwork" to know any of this...of course he is from Nigeria and has studied ALL over the world...he's great!!

[Sara-UK]

{sorry, don't mean to be a pain, but just so you know, the villi are little protrusions on the inside of the intestine into the lumen where the food passes through, these just increase the surface area through which absorption of digested food particles can be absorbed into the blood stream. I think with celiacs etc when these get attacked by an autoimmune response, you stop being able to absorb all the necessary things, so you get malnutrition and lose weight. Might be wrong though!

Sara

x

You totally have the signs!! Just please remember that even if he does do the blood test there is a very very high chance it will come back negative...but you actually need to try the diet to see...you sound exactly like me, and trust me if you read over everyone's test results under their names (when they're posting) you will see this is sooooo common of a problem. If that dr. tries to tell you to rule it out even after he gives you a test, please put your fate into your own hands like many of us have done. I'm just very lucky i went to a holistic dr. who didn't need to see the "positive bloodwork" to know any of this...of course he is from Nigeria and has studied ALL over the world...he's great!!

[par18]

Hi, everyone. I've been having intestinal issues for 4+ years, but have only been to the dr. about in in the past year.

Basically, I have diarrea almost all the time (occasionally it's solid, but not often), and almost always within 15 minutes or so after eating. It doesn't really seem to matter what I eat. Spicy foods and dairy does seem to make things worse (I do have a dairy allergy).

The dr. can't figure out what is wrong, so he's treating the symptoms. I'm taking Bentyl (for the intestinal spasms), 2 Fibercon/daily, a multi-vitamin (w/ iron), and Prilosec OTC (I also have reflux, but it seems to help "bind"). I will even take Pepto Bismol sometimes, but all that seems to do is turn the diarrea black.

I also deal with some depression/stress issues (taking Lexapro), acid reflux, major fatigue (I can easily sleep 12 hrs. & need a nap after being up a few hours), and some unexplained bone pain (arms & legs). After reading about Ciliac a bit online, I see that many/all of these symptoms can be associated w/ it.

The dr. sent me for a colonoscopy a couple of months ago, but it was negative. At this point, he's trying to treat the stress w/ Lexapro, thinking it may all be stress-related. I think that could be some of it--and the Lexapro seems to be helping with that, but I don't think that's the whole issue, since the diarrea hasn't stopped or even slowed down. It's to the point where it's waking me up in the night now several times a week.

I just feel so weak on the days when the diarrea is bad. I don't have cramping or stomach aches, really...just this urgency of "gotta' go NOW!" Especially after eating.

I did try doing a lower carb diet a while back & it seemed to clear things up a little, so maybe it is a gluten thing. I was following the Diabetes Carb Counting diet (I'm not diabetic, though). Does it make sense that this diet would have helped my intestinal issues?

Does it sound like I should get tested for Ciliac Disease? I never even thought of this until a friend mentioned the idea to me the other day.

Any help, ideas, suggestions, or comments would be greatly appreciated!

Thanks!

It sounds like you could be on the correct path. Looking back on my own symptoms I think the one thing that stands out is when you say you occasionally have formed stools is that you could have accidentally avoided gluten without even knowing what it was. This was my case. I wasn't even seeking treatment in the beginning because the diarrhea would come and go on it's own. I was never a big bread eater most of my life until after I started losing weight do to malabsorption. I was on a diet to try to gain back the weight and as a result this just made the diarrhea worse. It was only after I was Dx'd through biopsy that I understood the connection with gluten and the autoimmune response. Once I started the gluten-free diet for real my symptoms disappeared in only a couple of days never to return. I still cannot believe how quickly my body responded to the "absence" of gluten. I was told my recovery could take anywhere from 6 months to 2 years but I was feeling pretty good in about 3 months. Each one of us is different. The most important thing you can do if you decide to go on the diet is make sure you are doing everything possible to not get any gluten in the diet so you can get an accurate response. Good luck.

Tom

[Guest nini]

{sorry, don't mean to be a pain, but just so you know, the villi are little protrusions on the inside of the intestine into the lumen where the food passes through, these just increase the surface area through which absorption of digested food particles can be absorbed into the blood stream. I think with celiacs etc when these get attacked by an autoimmune response, you stop being able to absorb all the necessary things, so you get malnutrition and lose weight. Might be wrong though!

Sara

x

that is one of the ways Celiac can manifest but there are many others. Many of us were overweight because the body is so malnourished that it goes into survival mode and holds onto the only thing it can to survive and that is the fat cells.

[Drama Queen]

that is one of the ways Celiac can manifest but there are many others. Many of us were overweight because the body is so malnourished that it goes into survival mode and holds onto the only thing it can to survive and that is the fat cells.

Thanks to everyone for their comments. They have all been so helpful!

I had wondered about the weight loss thing. I am overweight and not "losing weight" so that was throwing me off a little. I've joked with my husband that for all the diarrea that I have, I should be a lot thinner! LOL!

DH wanted me to just try the gluten-free diet and see what happens, but much of what I've heard/read is that you should really get the diagnosis before taking things into your own hands. Would you all agree with that? Can a gluten-free diet be harmful if you're not actually allergic to the gluten?

I'm waiting for my GP to send the referral to the GI...hopefully he will get that done today, so I can get things rolling.

[IrishKelly]

Thanks to everyone for their comments. They have all been so helpful!

I had wondered about the weight loss thing. I am overweight and not "losing weight" so that was throwing me off a little. I've joked with my husband that for all the diarrea that I have, I should be a lot thinner! LOL!

DH wanted me to just try the gluten-free diet and see what happens, but much of what I've heard/read is that you should really get the diagnosis before taking things into your own hands. Would you all agree with that? Can a gluten-free diet be harmful if you're not actually allergic to the gluten?

I'm waiting for my GP to send the referral to the GI...hopefully he will get that done today, so I can get things rolling.

Well first off, since the tests are very likely to come back negative...if you really want to try it you may want to eat as much glutent as possible to try and get better results...which still didn't work for me through bloodwork by the way! Anyway, as far as gluten is overall concerned..the onoy thing a gluten free diet would do to ANYONE (gluten allergies or not) would benefit them. Your basically not eating all those unhealthy pre-kit items (such as noodle mixes, pre-made pizzas, etc...) You should go to this website glutenfreegirl.com This woman is a famous cook who doesn't even have a glutent intolerance problem and she explains the dangers and risks of gluten to EVERYONE.

[Cinbad]

Hi, everyone. I've been having intestinal issues for 4+ years, but have only been to the dr. about in in the past year.

Basically, I have diarrea almost all the time (occasionally it's solid, but not often), and almost always within 15 minutes or so after eating. It doesn't really seem to matter what I eat. Spicy foods and dairy does seem to make things worse (I do have a dairy allergy).

The dr. can't figure out what is wrong, so he's treating the symptoms. I'm taking Bentyl (for the intestinal spasms), 2 Fibercon/daily, a multi-vitamin (w/ iron), and Prilosec OTC (I also have reflux, but it seems to help "bind"). I will even take Pepto Bismol sometimes, but all that seems to do is turn the diarrea black.

I also deal with some depression/stress issues (taking Lexapro), acid reflux, major fatigue (I can easily sleep 12 hrs. & need a nap after being up a few hours), and some unexplained bone pain (arms & legs). After reading about Ciliac a bit online, I see that many/all of these symptoms can be associated w/ it.

The dr. sent me for a colonoscopy a couple of months ago, but it was negative. At this point, he's trying to treat the stress w/ Lexapro, thinking it may all be stress-related. I think that could be some of it--and the Lexapro seems to be helping with that, but I don't think that's the whole issue, since the diarrea hasn't stopped or even slowed down. It's to the point where it's waking me up in the night now several times a week.

I just feel so weak on the days when the diarrea is bad. I don't have cramping or stomach aches, really...just this urgency of "gotta' go NOW!" Especially after eating.

I did try doing a lower carb diet a while back & it seemed to clear things up a little, so maybe it is a gluten thing. I was following the Diabetes Carb Counting diet (I'm not diabetic, though). Does it make sense that this diet would have helped my intestinal issues?

Does it sound like I should get tested for Ciliac Disease? I never even thought of this until a friend mentioned the idea to me the other day.

Any help, ideas, suggestions, or comments would be greatly appreciated!

Thanks!

[Cinbad]

Hey Par18

You sound like your living close to the same thing I am. First I had horrible heartburn was downing Peptobismol. Went to the docs they said I had an Ulcer. Next was a bleeding ulcer they treated with Omprizole 2x a day for 30 days. Then they said I also had H-pylori, and treated with 2 different antibiotics for 14 days (still taking Omprizole). The my stomach kept blowing up like I was 7 months pregnant. Fatigue, moody, depressed, bruising and before all this I was having migraines. I am also hypoglycemic and have a daughter with Type 1 diabetes. Then they said I had Acitis (fluid from the liver) because my stomach was so big. I had cat scans and ultra sounds and lots of blood work over 4 weeks. I went in to have my stomach biopsied but they couldnt do it because they found out I was Pregnant now. (this had been going on for 7 weeks and I was only 4 weeks preg.) Well I mis-carried at 6 weeks, dont have the heart burn but my stomach continued to blow up.I noticed when I ate bread or had a half of a beer it was much worse , my boyfriend suggested Ciliac. So I went to the docs again! And she agreed completely. She said the only wat to actually confirm Ciliacs is biopsing the bowels, and the treatment would still be the same....GLUTEN FREE DIET. I have been doing this for a week now and it is slow but getting better. I am starving ...but thats because Im still learning about what I can eat. Even if you find stuff that doesnt contain Wheat, Barley, Rye and Oat it could have been made in a plant that makes other products that do contain these ingediants ....cross contamination. I have resorted to making my own food and / or buying only Gluten Free products. The food is not bad its just not as convinent as everyday food. I do feel better, at least better then I have in months. You can have a Gluten Allergy and not have Ciliac's disease. Try it for ahile and see if it works for you, but dont expect to feel better over night there is a learning curve. I had been checked for Ovarian Cancer, Stomach Cancer, Hepatitius, Cirrrosis etc. So at this point Im actually greatful that it may only be Ciliac. Ialso found out that Ciliac's can cause Hypoglycemic (i have), Type 1 diabete (my daughter) fatigue, brusing, headaches, bowel problems, heartburn, and last but not least miscarriages (again me) So good luck to you! And online there is a Gluten Free Mall and other links to helpful web sites. I have met someone recently that has it so bad she cant even cook in the same pans if they have been used by other people cooking with gluten! I would love to hear back from you ....on your progress.

Cindy

[ang1e0251]

If you feel you cannot stick to the diet unless you have a definate dx, then keep eating gluten and get the celiac blood panel and an endoscopy of the small bowel with multiple biopsies. You could be dx'd that way. If the tests show negative, you could still be gluten intolerant and continue to have symptoms.

If a dx isn't that important, go on the diet tonight and you'll know soon if it's helping you. You could have other food sensitivities as you said you have to dairy and those will affect you too. So if some of your problems resolve but not others, don't give up. There could be other foods in the mix. Once you are healed, you could reintroduce those foods. Keep reading here and asking questions. There's always someone who knows.