Not so sure it's IBS

Posted by katiek78 @katiek78, May 1, 2020

Hello, about a year ago I began having digestive issues that came on slowly, starting with more frequent bowel movements/diarrhea, lack of appetite, chest discomfort, and nausea, but no abdominal pain. The symptoms progressed and I began to lose quite a bit of weight which was a big concern considering I've always been lean. I had every test in the book (colonoscopy/endoscopy, pill cam, ultrasound, gallbladder testing, labs, etc.) and consulted with several GI and other specialists (endocrinology and infectious disease). All came back normal. After about four months, the symptoms subsided and eventually disappeared altogether. For the next four months I was totally fine, but in February the symptoms returned and have been present again for over two months. Doctors have stopped suggesting more testing, and seem to think this is IBS. I just completed a two week FODMAP diet as proposed by my doc, but it has not helped. Any thoughts or suggestions as to what else this could be, or does this in fact sound like IBS? I am skeptical because my symptoms don't include the abdominal pain. Any thoughts are much appreciated!

@katiek78 – welcome to Mayo Clinic Connect! You have had extensive testing, but no answer. Were you tested for celiac disease!

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@astaingegerdm

@katiek78 – welcome to Mayo Clinic Connect! You have had extensive testing, but no answer. Were you tested for celiac disease!

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Thanks for the response. Yes, negative for celiac. I have also tested negative for crohns, colitis, thyroid malfunction, autoimmune (ANA panel normal), epstien barr, endocrinology disorders, gallbladder issues, etc. Had a normal colonoscopy, although it had signs of irritation in the intestines, stomach, and esophagus. I had a normal CT scan, normal abdominal ultrasound and normal pill cam. So I'm not sure whether I accept that this is IBS despite the lack of traditional symptoms, or pursue a different diagnoses.

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You may not have celiac disease but you could still be nonceliac gluten sensitivity. I am very gluten sensitive, but do not have celiac (I do have the genes and Irish bloodline, but not the antibodies. My dr has told me that he has noticed celiac is more common in the Irish, and I am half Irish). Anyway, you could still be gluten sensitive without being celiac. Try a gluten free diet for a month and see what happens. It would mean gluten free bread, bread items, pasta, cereal and anything that is normally made with wheat will need to be gluten free.
There was a coworker who kept having loose stools and everything checked out normal. Finally she went on a gluten free diet and it helped her. She was not celiac either, but was apparently gluten sensitive.

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Hi Katie,
So I wanted to throw this out there that my symptoms started the same way. To this day (over 11 years) I have never had any abdominal pain, ever! I did have the other things that you had, plus some great vomiting episodes that frankly scared the crap out of my family and coworkers. This was more about a gallbladder cyst than IBS though. But, I have had all that and I did have IBS. Yes, I said DID because I now have very little of that plumbing left so the IBS is gone! LOL

I am glad you are not celiac, but I agree that it would be really good to try Gluten Free. My wife and daughter have been GF for about 4 years plus FODMAP for my wife and they are doing well. If you need any suggestions on GF products please ask as I believe I have tried them all.

I have to think it is a combination of things though. I hate to tell you that I didn't get a UC diagnosis until the third Colonoscopy. It might just be too early to see the damage. Please keep checking. If it is something intestinal you want it caught early so drug therapies or biologics can be tried.

Please keep us updated and I will help you as much as I can. I wish you great luck!!

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@airey2

You may not have celiac disease but you could still be nonceliac gluten sensitivity. I am very gluten sensitive, but do not have celiac (I do have the genes and Irish bloodline, but not the antibodies. My dr has told me that he has noticed celiac is more common in the Irish, and I am half Irish). Anyway, you could still be gluten sensitive without being celiac. Try a gluten free diet for a month and see what happens. It would mean gluten free bread, bread items, pasta, cereal and anything that is normally made with wheat will need to be gluten free.
There was a coworker who kept having loose stools and everything checked out normal. Finally she went on a gluten free diet and it helped her. She was not celiac either, but was apparently gluten sensitive.

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Thanks for the reply. I eliminated gluten as part of the FODMAP diet and I felt the symptoms worsened. To be fair, I threw in the towel after about 11 days. Maybe I didn't give it long enough?

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@msgtrebholtz

Hi Katie,
So I wanted to throw this out there that my symptoms started the same way. To this day (over 11 years) I have never had any abdominal pain, ever! I did have the other things that you had, plus some great vomiting episodes that frankly scared the crap out of my family and coworkers. This was more about a gallbladder cyst than IBS though. But, I have had all that and I did have IBS. Yes, I said DID because I now have very little of that plumbing left so the IBS is gone! LOL

I am glad you are not celiac, but I agree that it would be really good to try Gluten Free. My wife and daughter have been GF for about 4 years plus FODMAP for my wife and they are doing well. If you need any suggestions on GF products please ask as I believe I have tried them all.

I have to think it is a combination of things though. I hate to tell you that I didn't get a UC diagnosis until the third Colonoscopy. It might just be too early to see the damage. Please keep checking. If it is something intestinal you want it caught early so drug therapies or biologics can be tried.

Please keep us updated and I will help you as much as I can. I wish you great luck!!

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Hi Jason,
Thanks so much for the detailed information. I've been wondering if there was anyone else out there without the abdominal pain/cramping but other similar symptoms. I eliminated gluten through the FODMAP diet just recently, but gave up after about 11 days since my symptoms seemed to worsen and I was losing more weight.

That's interesting about your UC taking so much time to catch. I've had thoughts in the back of my head that maybe something was missed in my colonoscopy or or other tests since I had them done fairly soon after I started having symptoms. However, I assumed they would have caught something between the CT scan, colonoscopy, pillcam, and ultrasound…not the mention all the labs.

Anyway, sorry to hear about your struggles. I really appreciate your consideration and would welcome any other suggestions.

Thanks again!

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I seem to recall my GI Doc saying 3-4 weeks. Don't recall for sure. He gave me a book called "wheat gut" that was very helpful. Once you start figuring out which products to buy and how to cook them so they dont suck it is a lot easier. There are GF chicken strips from Tyson that are better than most regular ones. Also, the Udi's lasagna is fantastic! I guess it depends where you are as to the amount of products you can find. In Minnesota there is a pretty good selection.

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@katiek78

Hi Jason,
Thanks so much for the detailed information. I've been wondering if there was anyone else out there without the abdominal pain/cramping but other similar symptoms. I eliminated gluten through the FODMAP diet just recently, but gave up after about 11 days since my symptoms seemed to worsen and I was losing more weight.

That's interesting about your UC taking so much time to catch. I've had thoughts in the back of my head that maybe something was missed in my colonoscopy or or other tests since I had them done fairly soon after I started having symptoms. However, I assumed they would have caught something between the CT scan, colonoscopy, pillcam, and ultrasound…not the mention all the labs.

Anyway, sorry to hear about your struggles. I really appreciate your consideration and would welcome any other suggestions.

Thanks again!

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No problem at all. I am very happy to help. Please let me know what I can do for you. I have gone through a lot and I have more to go, but it is always nice to focus on helping someone else. Feel free to ask me anything.

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@katiek78 – You have gotten some good info from other members here. As you can see- everyone has a somewhat different history. You are correct in that your actual illness may not have shown much of itself. You did have irritation in intestines, stomach and esophagus. I had a similar history. Years of testing eventually revealed an unusual scattered autoimmune disease. I think your best plan could be to do more research yourself and then continue your search for another GI. I ended up at Mayo- you could consider going there. They are extremely thorough.

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@astaingegerdm

@katiek78 – You have gotten some good info from other members here. As you can see- everyone has a somewhat different history. You are correct in that your actual illness may not have shown much of itself. You did have irritation in intestines, stomach and esophagus. I had a similar history. Years of testing eventually revealed an unusual scattered autoimmune disease. I think your best plan could be to do more research yourself and then continue your search for another GI. I ended up at Mayo- you could consider going there. They are extremely thorough.

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I agree that we all have different histories. I ended up having all my procedures done at the University of Minnesota MC and was very happy with the care I received.

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@msgtrebholtz

I agree that we all have different histories. I ended up having all my procedures done at the University of Minnesota MC and was very happy with the care I received.

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Wow I thought the same thing.
I did stay through all the tests and met with doctor assistant for the results but I so wasn’t impressed.
I wish I could of went to a different hospital now.
Where I’m from Mayo is the be all end all hospital.
And when I say I wasn’t impressed people get upset with me.
I know they do great work but I needed a specialized clinic for gastroparesis and systemic scleroderma.

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@martft4

Wow I thought the same thing.
I did stay through all the tests and met with doctor assistant for the results but I so wasn’t impressed.
I wish I could of went to a different hospital now.
Where I’m from Mayo is the be all end all hospital.
And when I say I wasn’t impressed people get upset with me.
I know they do great work but I needed a specialized clinic for gastroparesis and systemic scleroderma.

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12/30/2020: I am editing this post, and a couple after this – After reading them over I felt no need to rehash any memories about past treatment so I am deleting some comments and focusing on the positive.

I went to see a surgeon at University of Minnesota Medical Center, who was amazing. She told me exactly what was going to happen, and also broke it to me that there so little chance that a J pouch would work for me that I should just flush that thought right out of my head (I may be paraphrasing there! LOL).

She asked if I had any questions, but all I had was a request. If at all possible to do the surgery without cutting me wide open. She said she would do her best. Turns out my colon was being strangled by fat and connective tissue all the way and she ended up cutting my colon out about a 1/2" at a time. My 2 1/2 hour surgery took about 11 hours, but she kept her word and I only have a couple of small scars. She and her staff worked hard to take care of me as well as I think it could have been done.

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