Please Help

[4tomorrow]

I have had ongoing diarrhea for six months. I have mild to moderate (sometimes a little more severe) pain above my navel. I had my gallbladder out 8 yrs. ago.

I have tried Questran to see if it was my gallbladder. I have tried flagyl and had a stool o & p. I have tried an IBS diet and I still felt awful. The only time I felt even a little relief was when I ate cream of rice for about two weeks.

I have had a normal colonoscopy and I just had an endoscopy. She said I had duodenal flattening, but I'm waiting for my biopsies to come back. I can't stand waiting though. She put me on Librax, because the bentyl and nulev didn't help with the pain at all. It seems to be helping a little but????

My antigen came back negative, but it was also taken during the time that I was only eating the cream of rice. I tried to tell that doctor to see if it would affect the test but he just brushed me off. I found a new doctor.

Thanks in advanve for any advice or insight. I just can't stand feeling like this anymore.

[jerseyangel]

Hi and welcome in--glad you found us! I had symptoms very similar to yours before I was Dx. I was having D--urgent, explosive, with a lot of cramping. Nausea, stomach pain, etc. I also was living on Cream of Rice just to get to the Dr. appts.! Are you off gluten? Since you have had the biopsy, you can go gluten-free no matter what the Dr. says. If you haven't yet, I would start now--there is a great likelihood that as you begin to heal and feel better, you will have much less of a need for the meds. If you need tips on how to begin the gluten-free lifestyle, let us know--everybody here has been through this and can be most helpful to you. Cutting out dairy, especially for the first 6 months or so, is also a good idea. Keep in touch, and don't be shy about asking questions

[StrongerToday]

All of my blood work came back negative, my doctor said it looked "perfect". He also urged me to listen to my body instead of a piece of paper. I've been GFDF since August, and while have had some bad days, my GI symptoms are much improved. I also had constant D, sharp pains in my stomach (like I was digesting glass) and I could hear my stomach gurgle so loudly it freaked me out.

It takes time and effort, but when you start feeling good you know it's worth it. Good luck!

[floridanative]

I'm am confused by your Dr. telling you she saw duodenal flattening and not telling you to go gluten-free now before the biopsy results are in. My doctor said everything looked good after the biopsy but admitted that he can't see damage necessarily, even with the scope. Then when he called Monday with my positive biopsy results, he had to eat a little crow which was the only highlight of the phone call. He read everything off the report but he sent the copy to my pcp who will send me a copy when she gets it. But my labs showed a clear textbook case of Celiac with no question. So my point (and I do have one) is, if your dr. saw something wrong when she was doing the scope, you probably have Celiac and as soon as you go gluten-free you will start to heal yourself and feel better. Every one is different but my doc said he fully expects to see much improved villi by July if I stick to the gluten-free diet/lifestyle.

Many docs (even GI's) don't even know what they are looking at when they see it. My first GI told me he'd biopsy my small intestine IF he saw something with the scope....needless to say I got another doctor to preform the test. Good luck and I hope you get some relief soon. The diet won't hurt you regardless of your test results so try it for now and see how you feel. Then if you get the news I got, you'll already be on your way to a new healthier life.

[marciab]

I completely agree with the others. I stopped having "D" and the sharp pains when I stoppped eating wheat, soy, corn, eggs, dairy, etc. You should also look at your meds for possible cause of "D" or "C". Nexium completely constipates me and Protonix made me jittery and have explosive "D". THe list goes on. Your doctor may or may not be up on the possible side effects, so you'll have to watch this yourself. The diet is time consuming and difficult to maintain, but well worth it ... Also, my doctor told me to go back to the foods you know you can tolerate everytime your stomach gets screwed up and then start all over again. This is really helping me pin down what I am sensitive to. I'm finding soy to be a bigger problem than I realized and it is in a lot of foods now in the form of lecithin. Good luck marcia

[CMCM]

I completely agree with the others. I stopped having "D" and the sharp pains when I stoppped eating wheat, soy, corn, eggs, dairy, etc. You should also look at your meds for possible cause of "D" or "C". Nexium completely constipates me and Protonix made me jittery and have explosive "D". THe list goes on. Your doctor may or may not be up on the possible side effects, so you'll have to watch this yourself. The diet is time consuming and difficult to maintain, but well worth it ... Also, my doctor told me to go back to the foods you know you can tolerate everytime your stomach gets screwed up and then start all over again. This is really helping me pin down what I am sensitive to. I'm finding soy to be a bigger problem than I realized and it is in a lot of foods now in the form of lecithin. Good luck marcia

WOW...I didn't realize lecithin is actually SOY!! In addition to the gluten and dairy problems, soy and corn don't agree with me either. Not sure about eggs, though.

It's really to the point where I think the only "safe" foods are fruits and veggies, certain meats. Nothing prepared or prepackaged. That's a minefield!

[4tomorrow]

I'm assuming she didn't tell me to start the diet since I will have my biopsy back by tuesday. I was wondering if the "flattening" associated with celiac is noticeable to the naked eye?

The librax seems to be helping the pain some so that is a very good thing.

[Nancym]

You might want to hop onto the Specific Carbohydrate Diet. It really helps to calm things down. I couldn't get my diarrhea stopped and being on this for about 2 weeks really turned things around. I like the diet but I'm not convinced it does everything they claim in the book. www.breakingtheviciouscycle.info

[floridanative]

4tomorrow - my GI who did the scope told me everything looked good but that the samples had to be seen in the lab for actual results. So either he was lying (since he told me I didn't have celiac disease) or the damage really is too small to see, even with the scope. You know we can't see all the microscopic bugs that are on our skin - creepy but true. Ick - sorry I brought that up. Keep us posted on your results. I have only been gluten freen since Monday night and it's quite an adjustment. With this board and all the extremely helpful people you and I can both do this.

[jknnej]

If your doctor actually saw flattening with the naked eye then you probably have celiac disease. My GI dr. said he does sometimes see signs of celiac disease with the naked eye; he didn't with me, but he has said he has before.

I would start the gluten-free diet and see how you feel.

How is the Bentl working for you? I was given that before Dx and it made me terribly constipated.

[nettiebeads]

I have had ongoing diarrhea for six months. I have mild to moderate (sometimes a little more severe) pain above my navel. I had my gallbladder out 8 yrs. ago.

I have tried Questran to see if it was my gallbladder. I have tried flagyl and had a stool o & p. I have tried an IBS diet and I still felt awful. The only time I felt even a little relief was when I ate cream of rice for about two weeks.

I have had a normal colonoscopy and I just had an endoscopy. She said I had duodenal flattening, but I'm waiting for my biopsies to come back. I can't stand waiting though. She put me on Librax, because the bentyl and nulev didn't help with the pain at all. It seems to be helping a little but????

My antigen came back negative, but it was also taken during the time that I was only eating the cream of rice. I tried to tell that doctor to see if it would affect the test but he just brushed me off. I found a new doctor.

Thanks in advanve for any advice or insight. I just can't stand feeling like this anymore.

Have you tried the totally gluten free diet? The fact that you felt some relief on cream of rice makes me suspicious of celiac. That and the (probably mis-)diagnosis of IBS. Since your bloodwork was probably already skewed by the mostly gluten-free diet, you might as well try it. And also, the diet challenge is a valid diagnostic tool. That's how I was dx'd with celiac 9 years ago, and my current dr doesn't see the need for any other testing to rule in celiac. And he made the statement that echoed my thinking - the tests may not be conclusive for a lot of people because the tests may not be sensitive enough in some areas for proper diagosis. He admitted that the medical establishment had a lot more to learn about celiac. (I like him) So try the diet for two to three weeks, listing everything you eat - supplements and all. Go through your toiletries looking for wheat starch or oat (very common). Then try one day with gluten and monitor your reactions for the days following. That should give you and any dr enough information without running expensive and invasive tests.

Annette

[4tomorrow]

The Bentyl didn't work at all. I found some relief with the Nulev but not enough to help me function.

The Librax has made a huge difference in my pain. I still get bloated and gassy but the pain is much more faint.

I am assuming that I am celiac at this point but since my biopsies are going to be back in about 3-4 days I thought I would try to wait it out. Without the Librax I would have started but it has helped greatly. I figured I'll go gluten free for a week or so and then back off of the the meds to see if it helps. I just tend to go all out on stuff when I put my mind to something so before I start cleaning the cupords and such I thought I'd wait to see what the results are. I will still probably try it even it it comes back negative.

Thanks again everyone.