Celiac, Ibs, Or Ulcer?

[JRock]

I haven't been on this forum since March (I think) when I had D for a month and my gastro doc finally did the endoscopy/colonoscopy and found that after being gluten-free for 6 months my villi had grown back! Yay! The doc had been blaming my symptoms on somehow getting glutened... at any rate, I was diagnosed with IBS. I was diagnosed with Celiac disease a year ago and have been extremely careful about being gluten-free since I'm super-sensitive to the slightest amount of gluten.

It seems like every 1.5 to 2 months, I get severe belly pain accompanied by either D or C and I have my Ttg levels tested and last time they were at a 12! Quite a change from the 100+ in Dec 08. I do everything I can at home (am super-careful with food, avoid going out to eat, I've done the elimination diet a few times) and then finally go back to my doc, who usually throws my symptoms into the IBS category. About 2 months ago, I developed severe abdominal pain in the upper left quadrant (usually gluten causes pain 1 or 2 inches above my belly button and my so-called IBS is of course in my small intestine - which is odd since I always thought it hurt the large intestine and is relieved by BMs - my intestinal pain is not). My doc didn't run any tests, but diagnosed me with an ulcer and started me on meds. After a few days, the meds seemed to help! I still get what I think must be ulcer pain every time I forget to take my 4x per day carafate or 2x per day zantac.

But now I'm back to that point where I'm having pain again. I can't even tell where exactly it is. Sometimes it seems like it's higher, then lower, then it's so excruciating I can't even focus and I roll up in a ball. I have no desire to go to my gastro doc because he'll do the same thing he always does, "Well, you must have ingested gluten or it's an IBS symptom. Go to the lab and we'll test your blood's Ttg levels." It's a waste of my time and I don't have a ton of sick leave. If I go to my doc on base, they'll just tell me to go to the gastro doc. I'm nearly convinced these doctors "diagnose" and then figure it's all in your head or you're just stupidly sabotaging yourself.

What I really love is when my gastro doc says, "All my other celiac patients went gluten-free and all of their symptoms went away." Like that's supposed to magically heal me. Ugh. At least I can still go to work and do what I need to do and I have backup pain meds if necessary. But that's just a temporary band-aid. I keep telling myself I just have to get used to having abdominal pain daily - and I've actually gotten used to some of the pain. But some of it is just too much.

I don't know if I'm venting or asking for help, but either way I do feel better talking about it I don't talk to anyone else about it because they either go too far one way (like my mom, who worries sick) or the other (like my husband, who seems to think that "mind over matter" can cure the pain). Everyone around me is sick of me not feeling well, so I just keep quiet. It's easier that way I guess.

Jen

[Gemini]

I haven't been on this forum since March (I think) when I had D for a month and my gastro doc finally did the endoscopy/colonoscopy and found that after being gluten-free for 6 months my villi had grown back! Yay! The doc had been blaming my symptoms on somehow getting glutened... at any rate, I was diagnosed with IBS. I was diagnosed with Celiac disease a year ago and have been extremely careful about being gluten-free since I'm super-sensitive to the slightest amount of gluten.

It seems like every 1.5 to 2 months, I get severe belly pain accompanied by either D or C and I have my Ttg levels tested and last time they were at a 12! Quite a change from the 100+ in Dec 08. I do everything I can at home (am super-careful with food, avoid going out to eat, I've done the elimination diet a few times) and then finally go back to my doc, who usually throws my symptoms into the IBS category. About 2 months ago, I developed severe abdominal pain in the upper left quadrant (usually gluten causes pain 1 or 2 inches above my belly button and my so-called IBS is of course in my small intestine - which is odd since I always thought it hurt the large intestine and is relieved by BMs - my intestinal pain is not). My doc didn't run any tests, but diagnosed me with an ulcer and started me on meds. After a few days, the meds seemed to help! I still get what I think must be ulcer pain every time I forget to take my 4x per day carafate or 2x per day zantac.

But now I'm back to that point where I'm having pain again. I can't even tell where exactly it is. Sometimes it seems like it's higher, then lower, then it's so excruciating I can't even focus and I roll up in a ball. I have no desire to go to my gastro doc because he'll do the same thing he always does, "Well, you must have ingested gluten or it's an IBS symptom. Go to the lab and we'll test your blood's Ttg levels." It's a waste of my time and I don't have a ton of sick leave. If I go to my doc on base, they'll just tell me to go to the gastro doc. I'm nearly convinced these doctors "diagnose" and then figure it's all in your head or you're just stupidly sabotaging yourself.

What I really love is when my gastro doc says, "All my other celiac patients went gluten-free and all of their symptoms went away." Like that's supposed to magically heal me. Ugh. At least I can still go to work and do what I need to do and I have backup pain meds if necessary. But that's just a temporary band-aid. I keep telling myself I just have to get used to having abdominal pain daily - and I've actually gotten used to some of the pain. But some of it is just too much.

I don't know if I'm venting or asking for help, but either way I do feel better talking about it I don't talk to anyone else about it because they either go too far one way (like my mom, who worries sick) or the other (like my husband, who seems to think that "mind over matter" can cure the pain). Everyone around me is sick of me not feeling well, so I just keep quiet. It's easier that way I guess.

Jen

Jen........I think it foolish of your doctor to treat you for an ulcer if he hasn't done any testing for one! Ulcer's are usually treated with antibiotics as they are caused by bacteria and it takes a high dosage to get rid of those. However, here are my thoughts.....

First off, and I have said this many, many times on this forum, you do not check for dietary compliance with the tTg test. Other autoimmune diseases can elevate tTg levels so you can be elevated and have it not be from Celiac Disease. It tests for intestinal damage and not for gliadin in the bloodstream. I am mystified as to why doctors do this and then try to tell their patients they are ingesting gluten. What needs to be done after the diagnosis are the Anti-gliadin IgA and IgG tests. If these are negative and in the low negative region, you are not ingesting gluten. It sounds like you are pretty careful anyway and if your villi shows healing, that should be another indicator that you are not ingesting gluten. They love to blame the patient when they can't figure it out!

IBS is just a general term for bowel problems and is not a diagnosis. Something is irritating your bowel still and my guess is another food intolerance. Do you consume dairy? I found out after healing from Celiac that I cannot tolerate anything but the smallest amounts of dairy. That means I pretty much only eat soft cheeses for the dairy portion of my diet because the enzymes used to culture cheeses partially break down the lactose, which I cannot digest. I cannot drink milk, eat ice cream or anything else dairy because I get the same symptoms as being glutened (I laugh that this word has become a verb!). You can also be allergic or intolerant of casein, which is the protein in milk. Lactose is the sugar. This is highly common in Celiacs and may be your problem.

The other problem is you could also have another bowel disease like colitis...that will cause diarrhea also. It can be easy to narrow things down if your doctor is on board but it seems he may not be totally with you on this. You may have to undergo more testing but I would try and cut out dairy first and keep track to see if things improve. Soy is also another big allergen which gives some people grief so I would look to another food problem first. You can do this on your own and if things don't clear up, you may have to find a doctor who will look into these other issues......or at least actually test you for an ulcer before treating you!

If you cut any additional foods out, do so one at a time so you will be able to pinpoint exactly which food is giving you a problem.

Good luck and I hope you are feeling better soon! Diarrhea can get awfully tiresome and frustrating if you cannot pinpoint the source.

[Gfresh404]

I haven't been on this forum since March (I think) when I had D for a month and my gastro doc finally did the endoscopy/colonoscopy and found that after being gluten-free for 6 months my villi had grown back! Yay! The doc had been blaming my symptoms on somehow getting glutened... at any rate, I was diagnosed with IBS. I was diagnosed with Celiac disease a year ago and have been extremely careful about being gluten-free since I'm super-sensitive to the slightest amount of gluten.

It seems like every 1.5 to 2 months, I get severe belly pain accompanied by either D or C and I have my Ttg levels tested and last time they were at a 12! Quite a change from the 100+ in Dec 08. I do everything I can at home (am super-careful with food, avoid going out to eat, I've done the elimination diet a few times) and then finally go back to my doc, who usually throws my symptoms into the IBS category. About 2 months ago, I developed severe abdominal pain in the upper left quadrant (usually gluten causes pain 1 or 2 inches above my belly button and my so-called IBS is of course in my small intestine - which is odd since I always thought it hurt the large intestine and is relieved by BMs - my intestinal pain is not). My doc didn't run any tests, but diagnosed me with an ulcer and started me on meds. After a few days, the meds seemed to help! I still get what I think must be ulcer pain every time I forget to take my 4x per day carafate or 2x per day zantac.

But now I'm back to that point where I'm having pain again. I can't even tell where exactly it is. Sometimes it seems like it's higher, then lower, then it's so excruciating I can't even focus and I roll up in a ball. I have no desire to go to my gastro doc because he'll do the same thing he always does, "Well, you must have ingested gluten or it's an IBS symptom. Go to the lab and we'll test your blood's Ttg levels." It's a waste of my time and I don't have a ton of sick leave. If I go to my doc on base, they'll just tell me to go to the gastro doc. I'm nearly convinced these doctors "diagnose" and then figure it's all in your head or you're just stupidly sabotaging yourself.

What I really love is when my gastro doc says, "All my other celiac patients went gluten-free and all of their symptoms went away." Like that's supposed to magically heal me. Ugh. At least I can still go to work and do what I need to do and I have backup pain meds if necessary. But that's just a temporary band-aid. I keep telling myself I just have to get used to having abdominal pain daily - and I've actually gotten used to some of the pain. But some of it is just too much.

I don't know if I'm venting or asking for help, but either way I do feel better talking about it I don't talk to anyone else about it because they either go too far one way (like my mom, who worries sick) or the other (like my husband, who seems to think that "mind over matter" can cure the pain). Everyone around me is sick of me not feeling well, so I just keep quiet. It's easier that way I guess.

Jen

Have you eliminated dairy? Are you taking any supplements like probiotics?

My guess would be another food is causing you issues but you said you did the elimination diet correct?

[JRock]

You know, I've eliminated dairy multiple times in the past year (initially it was quite a problem, but after 3 months of going gluten and dairy-free, I seem to do fine with dairy. Obviously I've remained gluten-free - just had my first sandwich in 8 months - thank goodness for Kinnikinnick!) and I have done the elimination diet multiple times as well, but maybe I haven't been patient enough. Are there accurate allergen tests that can be done?

And on the ulcer - get this - back in Aug 08 when they did my first endoscopy and discovered my atrophied villi they tested for H. Pylori. I told the doc that so I guess he found no reason to test for it. I need to do more research on ulcers. The base doctors are so busy I can't really blame them for moving through patients quickly.

[JRock]

Sorry - I forgot to say that yes, I take probiotics. I have kombucha at least twice a week as well - tried enzymes but I think they were causing more harm than good and I've tried lots of natural "intestinal calmers" and the like.

I have an appointment with my gastro doc today - the nurse relayed a message that since my endoscopy was clean back in Feb/Mar, I shouldn't have an ulcer, so he wants to see me. I'm not sure how long ulcers take to develop but I wasn't doing anything I can think of to cause one.

I've printed out my pharmacy history (tried everything from antispasm meds to antidepressants to narcotics for intestinal pain - of course the only thing that worked was the narcotics, but my doc clearly hates filling that med and I'm scared to death to take them unless I'm in so much pain I can't move) and put together a detailed list of my symptoms ranging from the ulcer to the intestinal pain to things that I think are probably unrelated like my flu symptoms from last week. I also put together a list of my daily meds, my as-needed meds and my discontinued meds (along with reasons).

Hopefully this will help him help me. If not, I guess I'm back to square one and get to try the elimination diet yet again. The smell of sweet potatoes still makes me sick. My poor hubby - he has enough on his plate without being married to a 28-year-old stuck in the miserable body of a 95-year-old.

Be back with good news (I hope!) later!

Jen