Ibs Added To The Mix

[Loey]

After being in constant, excruciating pain for almost three months and having a capsule endoscopy and an EGD I just found out yesterday that in addition to celiac and an ulcer I also have IBS. Does anyone else here have this triple whammy? I am hoping that this will help me to collect Disability. My GI said he doubted that IBS would be considered for it. I wasn't thinking that IBS alone would make me eligible but rather the combination. I am currently on UI and it will run out soon. He also told me that stress added to the symptoms of IBS and having no income and not feeling well enough to work is certainly stressful. Any suggestions would be greatly appreciated.

I truly feel that without this forum I'd be in a lot worse shape. I don't know who started it but God bless you!!!!

Loey

[SilverSlipper]

I probably won't be of much help I'm afraid. My daughter's original blood work came back as positive for Crohn's, celiac disease and IBS. When the biopsy came back with celiac disease (not Crohn's), I asked about IBS. I was told that IBS pretty much goes hand in hand with these types of diagnoses but doesn't require extra worry on my part. Of course, I might have totally misunderstood that or it may be only that way in my daughter's case, but I had always thought IBS just occurred with celiac disease.

Oops, edited to add...my brother had Crohn's and did receive disability for a short while because of it. It was a long diagnosing process for him. His weight went from 140 to 78 and he nearly died. After surgery in a different state (there were only two hospitals that would undertake the procedure), he wore a colostomy bag for a year before follow up surgery to 'create' a colon. After all of that, his weight leveled off and he went off disability. He was on it for about 2 - 3 years.

[Dixiebell]

Loey, IBS is a symptom of your celiac. Doctors seem to use it when they just don't know what is wrong. You already know that your bowel is irritated. If I remember correctly, your celiac has caused major damage to your intestine. I think it will just take more time for you to heal.

I would use every gun in your arsenal(celiac disease, ulcer and IBS) to try for the disability.

[ravenwoodglass]

Loey, IBS is a symptom of your celiac. Doctors seem to use it when they just don't know what is wrong. You already know that your bowel is irritated. If I remember correctly, your celiac has caused major damage to your intestine. I think it will just take more time for you to heal.

This was my thinking also. Do be sure to eliminate dairy and perhaps even soy for now. You can add them back when you are fully healed to see if you tolerate them. I really doubt that you are going to be able to get disability. A lot depends on whether your doctors are willing to state that they feel you are fully disabled and then the disability office will likely send you to their doctor who will make the final determination. Almost everyone is denied when they first apply. A lawyer after you are denied may be able to help. However you should find after you have been on the diet and very strict about it that you are symptom free and then you will be able to get back to work.

[Mari]

Hi loey,

I've been criticized for posting about some of the alternative methods which I have used and found helpful over the many years before being diagnosed with celiac disease. I did not try to treat by using one thing or another, instead was lucky to find a program which brought me back to being able to work and support myself. Along the way I learned how my digestive system functions and several ways of improving that function and my general health. Now that I'm gluten-free the programs are much more effective. Doing alternative self treatments required me to let loose of my strong predujice against alternative medicine while keeping my good sense and being able to make good judgements about using what was advised. I followed the instructions carefully and waited until my body felt it could go on to the next program. The results were rewarding.

In my 40's I applied for UI and got back a terrible letter accusing me of dishonesty from the supervisor of the UI office, he would not even file the application. My advice is for you to consult a lawyer or other expert in UI before applying so that you learn what your rights are and can make an effective arguement. But keep in mind that if you can learn to improve your own health you will be able to go back to work.

[Loey]

This was my thinking also. Do be sure to eliminate dairy and perhaps even soy for now. You can add them back when you are fully healed to see if you tolerate them. I really doubt that you are going to be able to get disability. A lot depends on whether your doctors are willing to state that they feel you are fully disabled and then the disability office will likely send you to their doctor who will make the final determination. Almost everyone is denied when they first apply. A lawyer after you are denied may be able to help. However you should find after you have been on the diet and very strict about it that you are symptom free and then you will be able to get back to work.

Thanks Ravenwoodglass, I eliminated soy and dairy (and almost everything else) bout two months ago. Believe me, I want to be symptom free and employed more than I can say!!!

Thanks for all of the support!

Loey

[Loey]

Loey, IBS is a symptom of your celiac. Doctors seem to use it when they just don't know what is wrong. You already know that your bowel is irritated. If I remember correctly, your celiac has caused major damage to your intestine. I think it will just take more time for you to heal.

I would use every gun in your arsenal(celiac disease, ulcer and IBS) to try for the disability.

I agree. I think he's just scratching his head at this point. I have a repeat EGD scheduled for January 14th. I will try to file for disability. Just tired of being in excruciating pain 24/7 (and even more tired of complaining about it).

Thanks for listening and being there!

Loey

[Loey]

Hi loey,

I've been criticized for posting about some of the alternative methods which I have used and found helpful over the many years before being diagnosed with celiac disease. I did not try to treat by using one thing or another, instead was lucky to find a program which brought me back to being able to work and support myself. Along the way I learned how my digestive system functions and several ways of improving that function and my general health. Now that I'm gluten-free the programs are much more effective. Doing alternative self treatments required me to let loose of my strong predujice against alternative medicine while keeping my good sense and being able to make good judgements about using what was advised. I followed the instructions carefully and waited until my body felt it could go on to the next program. The results were rewarding.

In my 40's I applied for UI and got back a terrible letter accusing me of dishonesty from the supervisor of the UI office, he would not even file the application. My advice is for you to consult a lawyer or other expert in UI before applying so that you learn what your rights are and can make an effective arguement. But keep in mind that if you can learn to improve your own health you will be able to go back to work.

I'm about to leave he house to take my brother and SIL to the airport. What alternative methods are you using?

Loey

[Loey]

I probably won't be of much help I'm afraid. My daughter's original blood work came back as positive for Crohn's, celiac disease and IBS. When the biopsy came back with celiac disease (not Crohn's), I asked about IBS. I was told that IBS pretty much goes hand in hand with these types of diagnoses but doesn't require extra worry on my part. Of course, I might have totally misunderstood that or it may be only that way in my daughter's case, but I had always thought IBS just occurred with celiac disease.

Oops, edited to add...my brother had Crohn's and did receive disability for a short while because of it. It was a long diagnosing process for him. His weight went from 140 to 78 and he nearly died. After surgery in a different state (there were only two hospitals that would undertake the procedure), he wore a colostomy bag for a year before follow up surgery to 'create' a colon. After all of that, his weight leveled off and he went off disability. He was on it for about 2 - 3 years.

I thank God that there's been no sign of Crohns. Glad your brother and daughter are all right.

Loey

[rockectman]

IBS is just a catch all phrase by DR's when they dont know what the problem is as some have stated.

I got disability due to meniere's disease, I also have celiac, but doubt that that alone will get you

disability as you can control that disease by what you eat. If you do plan on filing, be prepared

for a long fight and many appeals, I had to go before a board in person to finally win after about

a year of fighting. Good Luck!

I thank God that there's been no sign of Crohns. Glad your brother and daughter are all right.

Loey

[Loey]

I agree. I think he's just scratching his head at this point. I have a repeat EGD scheduled for January 14th. I will try to file for disability. Just tired of being in excruciating pain 24/7 (and even more tired of complaining about it).

Thanks for listening and being there!

Loey

A friend of mine just told me she thinks IBS is a doctor's way of saying "I'm baffled by your symptoms." Can't say I disagree with her. Although I don't have Crohns I am going to fight for disability for the trio of illnesses and also the emotional toll it's taken on me (I see a psychiatrist for depression). The psychiatrist said he'll file the paperwork so I'm keeping my fingers crossed that the GI will also back it up. I just hope he includes all of the problems not just the emotional ones. My brother and SIL were visiting this weekend and said that Disability Claims are always turned down when you file for them but if you go through the appeal process it is frequently approved and is then retroactive.

In all honesty i would prefer feeling better and getting a job!!!!

Again, I appreciate all of the support I get from this forum.

Loey

[cap6]

Don't know about your state (if you are going for state disability) but social security disability is usually turned down the first time or more. I worked in social services and will say that you have to keep appealing and fighting. I have seen it take a couple of years but if you are approved the payment is retroactive back to the day of your application. Just be careful to read everything. If you should miss a date for appeal or providing paperwork then you would have to start the application process all over again. Document everything! Keep copies of everything. Good luck!

[Emilushka]

To my understanding, IBS is more a description of a functional problem (the cramping, the pain, the alternating constipation and diarrhea) than a local damage issue. So while the Celiac is causing local inflammation and damage at certain spots in your intestine, the IBS would be causing your intestinal muscles to contract in the wrong ways at the wrong time.

In a sense you guys are right: IBS is called a "diagnosis of exclusion" which means that you try to eliminate every other possibility from the list of potential diagnoses before you give the IBS label. But if Loey's pain, etc can't be controlled by treating the Celiac and ulcer, IBS may actually make sense as a diagnosis. A separate diagnosis.

IBS isn't just a symptom of Celiac, though. There are people out there who only have IBS, and who don't have Celiac. It's a valid diagnosis by itself, if used correctly.

[Loey]

Don't know about your state (if you are going for state disability) but social security disability is usually turned down the first time or more. I worked in social services and will say that you have to keep appealing and fighting. I have seen it take a couple of years but if you are approved the payment is retroactive back to the day of your application. Just be careful to read everything. If you should miss a date for appeal or providing paperwork then you would have to start the application process all over again. Document everything! Keep copies of everything. Good luck!

Thank you SO much. I heard it's a long process. I also have to see which doctor will do the paperwork. My GI is not too supportive but I do see a psychiatrist for other issues and he said he would do all the paperwork I needed.

I'm also on UI right now so I have to make sure that the date of my disability doesn't conflict with UI or I'll have to repay that money. When I began collecting UI I wasn't this sick. Now there's no way that I can work but the UI forms aren't being checked. I feel dishonest but need the money. I'm a 99'er so it might be a moot point if the extensions don't go through.

Went to give you a + for the info but for some reason it only had - listed . Will have to find another reply from you and give you a +there.

Loey

[Loey]

Don't know about your state (if you are going for state disability) but social security disability is usually turned down the first time or more. I worked in social services and will say that you have to keep appealing and fighting. I have seen it take a couple of years but if you are approved the payment is retroactive back to the day of your application. Just be careful to read everything. If you should miss a date for appeal or providing paperwork then you would have to start the application process all over again. Document everything! Keep copies of everything. Good luck!

Second time around the + was there.

Loey

[mushroom]

To my understanding, IBS is more a description of a functional problem (the cramping, the pain, the alternating constipation and diarrhea) than a local damage issue. So while the Celiac is causing local inflammation and damage at certain spots in your intestine, the IBS would be causing your intestinal muscles to contract in the wrong ways at the wrong time.

In a sense you guys are right: IBS is called a "diagnosis of exclusion" which means that you try to eliminate every other possibility from the list of potential diagnoses before you give the IBS label. But if Loey's pain, etc can't be controlled by treating the Celiac and ulcer, IBS may actually make sense as a diagnosis. A separate diagnosis.

IBS isn't just a symptom of Celiac, though. There are people out there who only have IBS, and who don't have Celiac. It's a valid diagnosis by itself, if used correctly.

This is a very interesting (to me) proposition of IBS diagnosis, which I have never looked upon as having much meaning. So you're saying it's a malfunction of the intestinal muscles causing cramping and pain, principally, and thereby D and C?? And that it has no known etiology??

[Emilushka]

This is a very interesting (to me) proposition of IBS diagnosis, which I have never looked upon as having much meaning. So you're saying it's a malfunction of the intestinal muscles causing cramping and pain, principally, and thereby D and C?? And that it has no known etiology??

Yes, yes, and yes. There are people who genuinely have IBS without Celiac, or vice versa. Honestly, I'm sure there are docs that use it as a wastebasket term instead of treating it like the diagnosis it is, so I'm sure there are lots of people who've had bad experiences with the term itself. But it's intended to describe a specific clinical syndrome that we don't understand well.

Given that there are two separate plexuses (networks) of nerves within the gut wall, it's not surprising that something could go wrong with stimulation of muscle contraction. And muscle cramping doesn't feel good ANYWHERE. It causes extra problems when it's cramping and either pushing food along too quickly or too slowly - hence the diarrhea and constipation aspects.

But I don't mean to imply that it's a neurological issue because I don't think that's been proven EITHER. There are also multiple layers of muscle that could also malfunction. And no, we really don't know why, except that it tends to run in families.

Medicine really is still a baby science. A very baby science. Thank goodness for it, because we've already saved tons of lives even with our rudimentary understanding of things, but don't forget that there are WORLDS we don't know much about yet!

[ravenwoodglass]

This is only my opinion but I consider IBS to be a 'catchall' for gut problems that doctors can not find a diagnosis for. The problem may not be gluten it may be an intolerance to something else not identified. My soy issues were defined as IBS when I still had problems after being diagnosed with celiac. I know it is a pain in the behind for doctors to guide people through a true elimation diet and some might prefer meds rather than going through the process, (which is likely why it is so hard to find a doctor who will) but I do think that if more doctors did so rather than just handing out pills for symptoms IBS would become the 'symptom' it is rather than a 'diagnosis'.

[Emilushka]

This is only my opinion but I consider IBS to be a 'catchall' for gut problems that doctors can not find a diagnosis for. The problem may not be gluten it may be an intolerance to something else not identified. My soy issues were defined as IBS when I still had problems after being diagnosed with celiac. I know it is a pain in the behind for doctors to guide people through a true elimation diet and some might prefer meds rather than going through the process, (which is likely why it is so hard to find a doctor who will) but I do think that if more doctors did so rather than just handing out pills for symptoms IBS would become the 'symptom' it is rather than a 'diagnosis'.

Then your doc misused the term, which is exactly my point. There really is a thing called IBS, but docs are imperfect, just like everyone else. And unfortunately, that means that patients suffer.

[Loey]

Yes, yes, and yes. There are people who genuinely have IBS without Celiac, or vice versa. Honestly, I'm sure there are docs that use it as a wastebasket term instead of treating it like the diagnosis it is, so I'm sure there are lots of people who've had bad experiences with the term itself. But it's intended to describe a specific clinical syndrome that we don't understand well.

Given that there are two separate plexuses (networks) of nerves within the gut wall, it's not surprising that something could go wrong with stimulation of muscle contraction. And muscle cramping doesn't feel good ANYWHERE. It causes extra problems when it's cramping and either pushing food along too quickly or too slowly - hence the diarrhea and constipation aspects.

But I don't mean to imply that it's a neurological issue because I don't think that's been proven EITHER. There are also multiple layers of muscle that could also malfunction. And no, we really don't know why, except that it tends to run in families.

Medicine really is still a baby science. A very baby science. Thank goodness for it, because we've already saved tons of lives even with our rudimentary understanding of things, but don't forget that there are WORLDS we don't know much about yet!

Recently found out my husband's colleague takes a protein enzyme pump for relief for he IBS. I called the GI I want to switch to and they don't care who gives me the referral. It just has to be someone who knows what's wrong with me. I'm scheduled for my second EGD on January 14th. Don't know if I should try to get into the other office and have it done there.

As for it being a neurological issue I do know that stress make it and the ulcer much worse.

Thanks for sharing all of your medical knowledge with us. I know you're going to be an empathtic kick ass doctor!!!

Loey

[Marz]

You might want to look into the Specific Carbohydrate diet - I've heard lots of people with celiac that still have problems after going gluten-free, find relief following this diet. It eliminates all grains, sugar, lactose from the diet, going on the assumption that you have a intestinal overgrowth of "bad" bacteria.

You can also try gluten-free probiotics, or the SCD yoghurt which apparently is very good.

The other benefit from this diet, I feel, is that you avoid grains that could have very low amounts of gluten that don't bother most celiacs. This gluten comes from harvesting using shared equipment, storage near glutenous grains etc.

If you're using gluten-free processed foods, or even baking your own gluten-free products with flours, I'd recommend skipping it for a week or so and seeing if that helps.

Finally, you can try an elimination diet - start with 5 or so foods that you trust - whole, unprocessed foods - and every few days introduce a new item to your diet. If you start reacting to that food, you know you've either got a food intolerance, or there's some trace gluten involved?

[Loey]

You might want to look into the Specific Carbohydrate diet - I've heard lots of people with celiac that still have problems after going gluten-free, find relief following this diet. It eliminates all grains, sugar, lactose from the diet, going on the assumption that you have a intestinal overgrowth of "bad" bacteria.

You can also try gluten-free probiotics, or the SCD yoghurt which apparently is very good.

The other benefit from this diet, I feel, is that you avoid grains that could have very low amounts of gluten that don't bother most celiacs. This gluten comes from harvesting using shared equipment, storage near glutenous grains etc.

If you're using gluten-free processed foods, or even baking your own gluten-free products with flours, I'd recommend skipping it for a week or so and seeing if that helps.

Finally, you can try an elimination diet - start with 5 or so foods that you trust - whole, unprocessed foods - and every few days introduce a new item to your diet. If you start reacting to that food, you know you've either got a food intolerance, or there's some trace gluten involved?

Thanks so much Marz.

I've been on the elimination diet for a while. I basically only eat veggies, brown rice, olive oil, and eggs. Perhaps I'll try to skip the rice for a while. I think more than anything I need to get a second opinion. The doctor I want to see requires a referral and since I just moved to my state the only doctor I have right now is my GI. A bit awkward to ask him for a referral (I'm not big on confrontation and he hasn't been the most supportive doctor). I see a GP in February (her first opening) but he referred me to her.

Loey

[jerseyangel]

Thanks so much Marz.

I've been on the elimination diet for a while. I basically only eat veggies, brown rice, olive oil, and eggs. Perhaps I'll try to skip the rice for a while. I think more than anything I need to get a second opinion. The doctor I want to see requires a referral and since I just moved to my state the only doctor I have right now is my GI. A bit awkward to ask him for a referral (I'm not big on confrontation and he hasn't been the most supportive doctor). I see a GP in February (her first opening) but he referred me to her.

Loey

L--I still can't tolerate brown rice but I do fine with white. Maybe it's too much for you?

[Loey]

L--I still can't tolerate brown rice but I do fine with white. Maybe it's too much for you?

I'll have to try Jasmine or Basmati also. If I eliminate the rice I'm not left with much. Lately even the smell of meat makes me sick (am I becoming a latent vegetarian?). I'm sick of being sick!!!

Loey

[jerseyangel]

I'll have to try Jasmine or Basmati also. If I eliminate the rice I'm not left with much. Lately even the smell of meat makes me sick (am I becoming a latent vegetarian?). I'm sick of being sick!!!

Loey

I have very good luck with Lundberg Farms White Basmati.