3 years without a dianosis

[Tummyhurts]

Hi there, I just joined this forum after being a long time lurker. I am undiagnosed and it's been a long 3 years. Symptoms include horrible pain in the area all around and below belly button, nausea, no appetite, lost 25lbs in the past year. While having symptoms I get what feels like hard tender areas when feeling around my abdomen. I do not get diarrhea or constipation. Originally it would only last a few days and felt like very bad hunger pains but has gotten increasingly more intense and longer lasting. I've not had a day off for nearly a month now but some days are far worse than others. On my worst days I lay around all day.

I saw a gastroenterologist initially who did an endoscopy and stool/blood tests, and HIDA scan. All findings normal except duodenitis. I was treated for that with carafate to no effect on symptoms. The Dr thought "functional abdominal pain" but never wanted to so colonoscopy because the stool/blood tests were normal and I have no poop issues.

Then I saw a naturopath who tested me for food allergies (ELISA test) which showed allergies to eggs, wheat (gliadin), kidney beans, bananas and dairy. For 60 days I followed that diligently but no effect there either so I've since gone back to eating whatever sounds good since the nausea makes me a very picky eater and I just want calories going in.

I've also tried tons of different supplements/herbs to no effect, boswellia, peppermint oil, fish oil, glutamine, DGL, enzymes, ashwaghanda, turmeric, ginger, etc etc... Tried the fodmap diet. I fasted for 3 days on broth and that is the only thing that was helpful but symptoms came back within hours of beginning to break the fast.

I'm scheduled to see a second gastroenterologist, I've been waiting since May and I have an appointment in July. The past 2 days have been totally horrible and
I don't even know what to eat anymore.

Any advice on what I can try in the meantime? Advice on seeing the new dr? What to expect going forward? Does this sound like it could be crohns or? Thanks you guys.

 

[Dawn101]

Hi, check out JulieDalink's book Hot Detox. Lots of healing recipes. She also has a book called meals that heal. Good info and recipes. It takes time to heal the gut. Good luck.

 

[ronroush7]

Welcome. It is hard to pin down but it could be Crohns. Everyone's symptoms are different. There is a support group here for those who are undiagnosed. You might want to try a food diary to see what foods bother your stomach. I hope they can give you some answers soon.

 

[Jabee]

Did your first GI give you some idea of the origin of your duodenitis? A healthy duodenum is not inflamed! My crohn's first showed up in my duodenum. When my GI did my endoscopy because of complications from my previously diagnosed celiac disease and saw the ulcers and a stricture he immediately started talking about crohn's. I understand you treated it with carafate, but was there a reason he didn't recommend a PPI?

I'm really sorry you are in such pain. Chronic pain is really awful. Do you have a GP whom
You can see in the meantime? You might try to give your bowel a rest by confining yourself to clear liquids for a day or two to see if it helps. Bone broth has a good amount of protein so you don't have to undernourish yourself.

 

[Tummyhurts]

Thank you for the suggestions. I ordered Hot Detox at the library.

My GP is the naturopath who is convinced if I just avoid the food allergens for longer it will work itself out hence the referral to the next GI. I've read mixed things on the accuracy of this test and don't know what to think anyway.

I did try the bone broth fast which was very settling but pain came back as soon as I began eating. Any tips on soothing food/ what to eat after breaking the fast?

The first GI said my duodenitis "was not that bad, she'd seen way worse that was asymptomatic" so it was not thought to be the cause of the pain, then jumped right to the functional abdominal pain/it's all in your head nonsense I've heard others have gotten from their doctors. I did do Prilosec for a while yes. Did not help.

I'm just hoping the next GI is actually willing to look in my colon/intestines, that is my big fear is they won't look because I don't have diarrhea or inflammatory markers, etc, then another long wait to see someone new again.

Thank you.

 

[shamrock15]

There are chances that it may be bacterial overgrowth as well, but based on what you are seeing I too believe you need more work done.

If you have narrowings, a liquid or soft diet can help short term. It may buy you a couple days but I wouldn't expect long term relief from it.

In any case, best wishes for a much quicker detection going forward and a treatment plan that will bring you relief.