Celiac And Ibs

[junky]

My gastroenterologist is pretty quick to jump at the IBS diagnosis without using the Rome II diagnosis [ruling out celiac disease, ulcerative colitis, and chrohns], which is really the only way you can diagnose IBS, from what I've read.

I wanted to know if there were any important differences between IBS and Celiac? I know the wheat intolorance is a big issue, but right now, gluten or not it seems, I feel sick. Is this because of bowel damage that has already been done? Also, has anyone else been given the IBS diagnosis or found out later it was celiac?

[Lisa]

My gastroenterologist is pretty quick to jump at the IBS diagnosis without using the Rome II diagnosis [ruling out celiac disease, ulcerative colitis, and chrohns], which is really the only way you can diagnose IBS, from what I've read.

I wanted to know if there were any important differences between IBS and Celiac? I know the wheat intolorance is a big issue, but right now, gluten or not it seems, I feel sick. Is this because of bowel damage that has already been done? Also, has anyone else been given the IBS diagnosis or found out later it was celiac?

Oh my, "has anyone else been give the IBS diagnosis and found out it was Celiac", yes maam (assuming gender), way toooo many of us. We jest here about IBS stands for "I be stumped". It is not a true diagnosis, just a general term used, where other causes are not evident.

Junky, list some of you symptoms and perhaps some of us can help you connect the dots.

BTW, I too am in NC.

[junky]

Nice to meet another person from NC. I just moved here [Wilmington] from VA.

It does seem to be the diagnosis made when your doctors have ruled out everything. But honestly, my doctors haven't ruled out everything unless they do the tests for celiac, crohns, and ulcerative colitis, along with maybe other food allergies.

My symptoms now tend to be more severe after I eat. Sometimes I can eat a meal and be just a little nauseated, sometimes I'll have to run to the bathroom because of diarrhea. Then there are the really bad times...the other night I had eaten dinner and I was extremely sick afterwards, on the verge of passing out, not coherent, very weak, sharp pains in my abdomen/bowels. I realized that I'm alternating between diarrhea and constipation right now. My average day, I'm nauseated most of the time in varying degrees and I am constantly weak. Sometimes there's diarrhea, sometimes not. But I do have bad episodes after I eat, definitely.

But the thing is, it seems like it's no matter what I eat. I even tried eating gluten free chips for the first time last night, and for some reason, it still made me feel sick. I don't know if it's just the damage already done to my bowels that would make me sick, and that after a while of eating gluten-free food it would go away.

[Lisa]

Nice to meet another person from NC. I just moved here [Wilmington] from VA.

It does seem to be the diagnosis made when your doctors have ruled out everything. But honestly, my doctors haven't ruled out everything unless they do the tests for celiac, crohns, and ulcerative colitis, along with maybe other food allergies.

My symptoms now tend to be more severe after I eat. Sometimes I can eat a meal and be just a little nauseated, sometimes I'll have to run to the bathroom because of diarrhea. Then there are the really bad times...the other night I had eaten dinner and I was extremely sick afterwards, on the verge of passing out, not coherent, very weak, sharp pains in my abdomen/bowels. I realized that I'm alternating between diarrhea and constipation right now. My average day, I'm nauseated most of the time in varying degrees and I am constantly weak. Sometimes there's diarrhea, sometimes not. But I do have bad episodes after I eat, definitely.

But the thing is, it seems like it's no matter what I eat. I even tried eating gluten free chips for the first time last night, and for some reason, it still made me feel sick. I don't know if it's just the damage already done to my bowels that would make me sick, and that after a while of eating gluten-free food it would go away.

Yup, there is a process here. First you have to find out what is causing your symptoms, whether it be Celiac, Chrohns or other. Test should be done to rule out other issues as you stated. You can ask you doctor to do a full blood panel for Celiac, although, it can rule it in, but is cannot rule it out. The same for the endoscopy and biopsy.

Many here on this site have been self-diagnosed and feel very comfortable with that. A positive dietary response was all they needed to know to realize what was causing them discomfort/pain. Many of their symptoms and issues have resolved being gluten free.

When I was at my sickest, I had no knowledge of what Celiac was. I was housebound for two months and finally I was diagnosed with an endoscopy with total lack of villi. Everything that I ate passed through in about 20 minutes - in tacked. (sorry for the detail, but sometimes it helps people to relate).

If you should pursue further testing, I would recommend that you continue eating gluten. That will help to insure a more accurate test.

If you should go this way and gluten is your issue, I can assure you that you life is not over, it can be a beginning.

[Guest Doll]

Hi Junky! It could be that you still have damage. How long have you been diagnosed, and did you test positive for actual Celiac Disease (i.e. that means you have intestinal damage)?. Are you 100% sure that everything you are eating is gluten-free?

IBS is a BS title, but it really describes a set of symptoms. People with IBS often can't have fatty foods among other things. That means, if you really do have IBS, you may never be able to handle fried chips again. However, if you do have Celiac and just need time to heal, this should pass. Some people need 1+ years gluten-free to heal.

You can have both Celiac and IBS of course, but many IBS patients without Celiac also feel better on the gluten-free diet.

You might want to try the IBS diet in addition to being gluten-free. Please continue to work with your doctor and I hope you feel better soon! Celiac isn't always the cause. Make sure your doctor rules out Ulcerative Colitis, Crohn's, H. Pylori, other bowel infections, polyps, etc.

[junky]

I also wanted to note also a very important symptom I've been having. Although the last couple of mornings were okay [which made me forget], I do get extremely ill in the mornings. Mainly nausea, sometimes diarrhea, EXTREME weakness [can't even hold a phone or book]. But also, I have heart palpitations too [my heart beats really fast]. I'm really worried about the heart palpitations, because I've never had heart problems before. But I've had the palpitations ever since I got sick. To give you an idea, the doctor's did take my pulse once in the morning time at an appointment, and it was 150. That was at my sickest point. Now when I take it in the mornings, it hovers around 110-120. It will only last for an hour or two at the most. Is this common with Celiac, or is it something else?

Yup, there is a process here. First you have to find out what is causing your symptoms, whether it be Celiac, Chrohns or other. Test should be done to rule out other issues as you stated. You can ask you doctor to do a full blood panel for Celiac, although, it can rule it in, but is cannot rule it out. The same for the endoscopy and biopsy.

Many here on this site have been self-diagnosed and feel very comfortable with that. A positive dietary response was all they needed to know to realize what was causing them discomfort/pain. Many of their symptoms and issues have resolved being gluten free.

When I was at my sickest, I had no knowledge of what Celiac was. I was housebound for two months and finally I was diagnosed with an endoscopy with total lack of villi. Everything that I ate passed through in about 20 minutes - in tacked. (sorry for the detail, but sometimes it helps people to relate).

If you should pursue further testing, I would recommend that you continue eating gluten. That will help to insure a more accurate test.

If you should go this way and gluten is your issue, I can assure you that you life is not over, it can be a beginning.

I'm still deciding if I need the diagnosis to be okay with being sick. I'm just so worried that it could be some other mysterious disease that I haven't ever heard of. But I have been eating gluten, but I've also been testing out gluten free snacks, to see if maybe I'd feel even the slightest difference afterwards.

I'm pretty much prepared for a gluten diet though. I'm honestly desperate at this point.

Hi Junky! It could be that you still have damage. How long have you been diagnosed, and did you test positive for actual Celiac Disease (i.e. that means you have intestinal damage)?. Are you 100% sure that everything you are eating is gluten-free?

IBS is a BS title, but it really describes a set of symptoms. People with IBS often can't have fatty foods among other things. That means, if you really do have IBS, you may never be able to handle fried chips again. However, if you do have Celiac and just need time to heal, this should pass. Some people need 1+ years gluten-free to heal.

You can have both Celiac and IBS of course, but many IBS patients without Celiac also feel better on the gluten-free diet.

You might want to try the IBS diet in addition to being gluten-free. Please continue to work with your doctor and I hope you feel better soon! Celiac isn't always the cause. Make sure your doctor rules out Ulcerative Colitis, Crohn's, H. Pylori, other bowel infections, polyps, etc.

I actually haven't been diagnosed yet and no positive test [i'm waiting on my doctor's appt].

I not on a gluten-free diet yet, but I did buy a couple gluten free snack to try and see if I felt as sick afterwards. I didn't know if there would be some instantaneous reaction with it that let me know or not [maybe less diarrhea, cramping, something...].

But I know before I get the test, I need to stay on gluten. So I was thinking about trying the IBS diet instead, see if it helps any.

[Teacher1958]

Oh my, "has anyone else been give the IBS diagnosis and found out it was Celiac", yes maam (assuming gender), way toooo many of us. We jest here about IBS stands for "I be stumped". It is not a true diagnosis, just a general term used, where other causes are not evident.

Junky, list some of you symptoms and perhaps some of us can help you connect the dots.

BTW, I too am in NC.

Yep. I'm old, so I also got the "nervous stomach" diagnosis initially, followed by the ulcer diagnosis (the doctor was sure there must be an ulcer in there somewhere, but didn't actually check for it), and then the IBS diagnosis. Even though I had numerous other symptoms that should've tipped of these ignorant doctors, I still ended up having to diagnose myself. Thank God for the internet.

[junky]

Yep. I'm old, so I also got the "nervous stomach" diagnosis initially, followed by the ulcer diagnosis (the doctor was sure there must be an ulcer in there somewhere, but didn't actually check for it), and then the IBS diagnosis. Even though I had numerous other symptoms that should've tipped of these ignorant doctors, I still ended up having to diagnose myself. Thank God for the internet.

Hah, definitely. I don't know what I would have done without the internet. Funny story though, I actually wouldn't have looked into Celiac disease if it weren't for the girl who cuts my hair. She related a lot of my symptoms to her cousin who has it.

[little d]

Hi Junky and welcome

As Lisa has said there on some on here that are Self diagnosed, I am one of those, only because my sister told me what she had been going through and found out on the internet, we were simular and also differant in many ways. If it was not for her I would still be suffering, and not knowing anything differant. I am not as sick as some other people here so I guess that I am one of the lucky ones, which I sometime feel guilty for even posting anything. Last year when I went to got tested from my GI doc the very first time I had an appointment with him I was explaining to him my symptoms and how I felt being Gluten free which was at that time only 3 months and how it affected me and before even touching me he wanted to label me IBS "You can control your body with meds" he said I flat out told him NO I am NOT going to control my body with meds, I kinda want to do things naturally before I put pills in my body, but I totally not a health nut. But anyway he looked at me and said "Well you know that eating gluten free is a life time commitment" I said ya I know and I feel better gluten-free. After testing with the scopes and blood everything was negative I just knew everything was positive so then I started eating gluten again because he wanted to do a Pillcam on me because all my symptoms came back and within 7 months all symptoms but even worse D alternating with C, heartburn, stomachburn depending on what it was burned while going down when eating, nausea after eating sometimes felt like I was going to vomit but never did but sometime I wonder if the times that I did vomit, if it was from being glutened, sometimes when I made a meal of eaten out I would be the only one who was sick and It usually hit me in the middle of the night. The brain fog, very tired like can't keep eyes open sometimes (working nights and working with babies I just can't afford to fall asleep while holding one, and driving home in the morning) and also I get the heart palitations after eating gluten when I get my heart palpitations then I know that I have just eaten gluten. and I also have the tooth enamel discoloration on my front top teeth have had that for as long as I could remember, People say to me do you drink well water or are you from East or West Texas. No I'm not. So My GI doc says he is not convinced that I don't have Celiac Disease, he was trying to get me to a Second GI Doc in Dallas but I declined because at the time I had broken my foot and could not afford both. Your hair dresser helped save your life, For me ironically my sister who we do not get along to well because one thing or another, but that day when we visited our mom at the same time she asked me a bunch of questions and I could not help but to listen to what she had to say. It has brought us closer. Good luck on you visit with you GI Doc.

donna

[junky]

Hi Junky and welcome

As Lisa has said there on some on here that are Self diagnosed, I am one of those, only because my sister told me what she had been going through and found out on the internet, we were simular and also differant in many ways. If it was not for her I would still be suffering, and not knowing anything differant. I am not as sick as some other people here so I guess that I am one of the lucky ones, which I sometime feel guilty for even posting anything. Last year when I went to got tested from my GI doc the very first time I had an appointment with him I was explaining to him my symptoms and how I felt being Gluten free which was at that time only 3 months and how it affected me and before even touching me he wanted to label me IBS "You can control your body with meds" he said I flat out told him NO I am NOT going to control my body with meds, I kinda want to do things naturally before I put pills in my body, but I totally not a health nut. But anyway he looked at me and said "Well you know that eating gluten free is a life time commitment" I said ya I know and I feel better gluten-free. After testing with the scopes and blood everything was negative I just knew everything was positive so then I started eating gluten again because he wanted to do a Pillcam on me because all my symptoms came back and within 7 months all symptoms but even worse D alternating with C, heartburn, stomachburn depending on what it was burned while going down when eating, nausea after eating sometimes felt like I was going to vomit but never did but sometime I wonder if the times that I did vomit, if it was from being glutened, sometimes when I made a meal of eaten out I would be the only one who was sick and It usually hit me in the middle of the night. The brain fog, very tired like can't keep eyes open sometimes (working nights and working with babies I just can't afford to fall asleep while holding one, and driving home in the morning) and also I get the heart palitations after eating gluten when I get my heart palpitations then I know that I have just eaten gluten. and I also have the tooth enamel discoloration on my front top teeth have had that for as long as I could remember, People say to me do you drink well water or are you from East or West Texas. No I'm not. So My GI doc says he is not convinced that I don't have Celiac Disease, he was trying to get me to a Second GI Doc in Dallas but I declined because at the time I had broken my foot and could not afford both. Your hair dresser helped save your life, For me ironically my sister who we do not get along to well because one thing or another, but that day when we visited our mom at the same time she asked me a bunch of questions and I could not help but to listen to what she had to say. It has brought us closer. Good luck on you visit with you GI Doc.

donna

I really think my hair dresser opened my eyes. She also told me about taking ginger capsules for nausea, and honestly, it's the only thing that's helped out of all of prescription nausea medications the doctors gave me [liquid donnatol, phenagrine pills, shots, and suppositories, zophram shots and dissolvable pills]. The prescription meds just messed with my mental illness and put me through long bouts of sleep where I'd wake up being even sicker.

I definitely relate to the nausea...where you feel like you're going to vomit, but you can't. And I think the scariest thing for me is the heart palpitations. I hadn't had them this severe in a while, and when they're at their worst, my chest will actually hurt all day, even after the palpitations stop.

I'm worried about my GI doctor. They work through their physician assistants, so I don't think some of the key information is getting passed along. Either that or they're just expecting me to roll over and accept the IBS diagnosis with out the Rome II diagnosis. I'm hoping my next visit is better than the last one, where she basically told me that if my CAT scan came back normal, we'd start IBS treatment, because, "There's nothing else it could be." But with all the things I've learned from this site and others, I think I can bring up a pretty strong argument to them.

[sfm]

Nice to meet another person from NC. I just moved here [Wilmington] from VA.

It does seem to be the diagnosis made when your doctors have ruled out everything. But honestly, my doctors haven't ruled out everything unless they do the tests for celiac, crohns, and ulcerative colitis, along with maybe other food allergies.

My symptoms now tend to be more severe after I eat. Sometimes I can eat a meal and be just a little nauseated, sometimes I'll have to run to the bathroom because of diarrhea. Then there are the really bad times...the other night I had eaten dinner and I was extremely sick afterwards, on the verge of passing out, not coherent, very weak, sharp pains in my abdomen/bowels. I realized that I'm alternating between diarrhea and constipation right now. My average day, I'm nauseated most of the time in varying degrees and I am constantly weak. Sometimes there's diarrhea, sometimes not. But I do have bad episodes after I eat, definitely.

But the thing is, it seems like it's no matter what I eat. I even tried eating gluten free chips for the first time last night, and for some reason, it still made me feel sick. I don't know if it's just the damage already done to my bowels that would make me sick, and that after a while of eating gluten-free food it would go away.

Before I went gluten free, I was sick ALL THE TIME. It didn't matter what I ate, I always felt ill afterwards. It does take awhile before your body starts to heal; when the digestive system is screwed up, it doesn't like much of anything.

Try to eat more whole foods (meat, vegetables, fruit) than processed foods like chips at first. Your system might not be ready for more than that. Some have difficulty with raw vegetables at first; some people have trouble with fruit. It's all trial and error. Dairy is another thing which many can't tolerate at first.

One of my best friends is brown rice. Potato is good, too, usually easy on the stomach.

It does get better; right now you're still in the early stages of healing.

[sfm]

I also wanted to note also a very important symptom I've been having. Although the last couple of mornings were okay [which made me forget], I do get extremely ill in the mornings. Mainly nausea, sometimes diarrhea, EXTREME weakness [can't even hold a phone or book]. But also, I have heart palpitations too [my heart beats really fast]. I'm really worried about the heart palpitations, because I've never had heart problems before. But I've had the palpitations ever since I got sick. To give you an idea, the doctor's did take my pulse once in the morning time at an appointment, and it was 150. That was at my sickest point. Now when I take it in the mornings, it hovers around 110-120. It will only last for an hour or two at the most. Is this common with Celiac, or is it something else?

I'm still deciding if I need the diagnosis to be okay with being sick. I'm just so worried that it could be some other mysterious disease that I haven't ever heard of. But I have been eating gluten, but I've also been testing out gluten free snacks, to see if maybe I'd feel even the slightest difference afterwards.

I'm pretty much prepared for a gluten diet though. I'm honestly desperate at this point.

I actually haven't been diagnosed yet and no positive test [i'm waiting on my doctor's appt].

I not on a gluten-free diet yet, but I did buy a couple gluten free snack to try and see if I felt as sick afterwards. I didn't know if there would be some instantaneous reaction with it that let me know or not [maybe less diarrhea, cramping, something...].

But I know before I get the test, I need to stay on gluten. So I was thinking about trying the IBS diet instead, see if it helps any.

I replied before without reading the rest of the thread - so the answer is really no, you won't notice a difference eating gluten free snacks as opposed to gluten snacks - not while you are still ingesting gluten. If you are gluten intolerant, than you are constantly causing more damage to your digestive system, so everything you eat will continue to make you sick.

I had to think of it like poison to give it up - which, to me, it is.

[Nancym]

Some of your symptoms sound like Graves disease, hyperthyroid, which is found more often amongst celiacs. So make sure your doctor tests your thyroid.

[Fiddle-Faddle]

Ditto on the thyroid. Also, do your research on Graves' BEFORE talking to the doctor. Know what is considered normal range bloodwork-wise today, as the parameters have changed in the last couple of years. According to my endocrinologist, most endocrinologists are aware of the new guidelines, but most other docs are not.

Gluten-free snacks will NOT give you a clear idea of how you react while you are still eating gluten. In fact, the gluten-free bread, cookie, and cake options should probably be avoided for the first couple of months (some people will suggest more than that) while your gut heals. Gluten-free subs are much heavier than the gluteny options, and most of us have found that they were difficult for our stomachs until our guts healed. Stick with (surprise surprise) naturally healthy foods: broiled meats, fish, chicken, salads, brown rice, potatoes, corn, vegies, and fruit.

I have the impression from this board that most celiacs also have trouble with dairy (ANYTHING dairy,not just lactose), but for many of us, that goes away as the gut heals.

[kbtoyssni]

I didn't read the whole thread, but I agree that IBS is just a label for symptoms and not a treatment for a disease. Every health problem is caused by something, and an IBS diagnosis means you hasn't found the cause of your digestive problems yet.

Eating on gluten-free meal probably won't make you feel all better. It's going to take days, or even a few months, of continuous gluten-free eating to feel well. If you do have celiac, your gut's damaged so anything you eat can irritate until it heals. Plus, cross contamination is so easy to overlook, that it's unlikely that your first try at gluten-free was truly gluten-free (I know mine wasn't!).