I don't want to settle for IBS-D diagnosis...

Posted by goosetuffs @goosetuffs, Oct 10, 2021

I started having diarrhea when when I was a teenager (12 years ago). I have been on a gluten free diet ever since, since it seemed to help me feel better for a long time. Through the years, my symptoms have been getting worse and my flare ups are more frequent. I have chronic diarrhea, urgency, and colon spasms. My doctor put me on Levsin, which helps when I have stomach pain. I decided to stop taking the birth control pill about 2 months ago to see if that helps my stomach. I noticed a difference for the first month, but now I'm back to feeling awful again. I was given an endoscopy when I was 15, (I'm 28 now) but have had very little testing since. I tested negative for lactose intolerance about 4 years ago. I had a stool sample test done a few months ago, and nothing was found. I found I am B12 deficient, but I now take pills sublingually for that. I basically live off Imodium at this point. I follow a low FODMAP diet with the exception of dairy.

I have an appointment with my GI this week and I was wondering what tests I should ask for or medicines I should request? I've never had a colonoscopy. I just want to feel like a normal person.

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beautybldr | @beautybldr | Aug 12, 2023

I have spent 10 days in hospital with horrific diaherea. I was disgnosed with C DIFF. I have never heard of it. Would appreciate any info available.

sunshine2023 | @sunshine2023 | Aug 13, 2023

In reply to @livefully "My story is similar to yours. By a miracle this year, I got into Mayo in..." + (show)

@livefully

My story is similar to yours. By a miracle this year, I got into Mayo in FL. Went to several departments who all worked together and I found help with them all but for my GI challenges, I found help with the Integrative Department there. Have worked with them for awhile now and they discovered I had pernicious anemia, low on vitamin D, anemic, have fat malabsorption, and something called "latex cross reactivity". Apparently, those things create a perfect GI storm. They have been AMAZING to work with. I came to them not knowing I had all this as I had been misdiagnosed with so much other stuff including IBS. They are like detectives and have been working to "solve the puzzle". I work with a nutritionist there and an integrative doctor and over time (since Jan 2021), working with them and the treatment plan they developed, my GI challenges have drastically improved. As they discovered the misdiagnoses and then worked to figure out what was really wrong, they would tweak my treatment plan and then monitor me to see how I reacted. I am out of state and work via telehealth and the patient portal with them and then go down here and there for in person visits. I just got a new local doctor (mine retired) and my new local doc was like "wow... nobody but Mayo would ever have figured this out your case was so complex". I highly, highly recommend the Mayo Clinic. They listened, then worked as an integrative team to help me. The best part is they took me seriously and then worked to diligently solve this versus giving me a pat answer or "oh well" or "its just your body" or "well you are a female" or any of those standard answers. The Integrative Department will probably refer me to the GI department there but I like that before they do that, they have worked to figure things out. I dont know that anyone else would have figured out that I had latex cross reactivity. I had tried everything over the years to help (vegetarian, vegan, paleo, SCD, low food map, etc etc) and it helped to a degree but then the effects wouldnt last. The treatment program they have me on actually works. The number of the Integrative Department at the Mayo in FL is 904-953-0951. I see Dr. Perlman. After me fighting for help for years and getting loaded with a ton of misdiagnoses, it has been amazing to work with medical folks who actually work with me and work to figure things out. My physical quality of life is so much better since I started their treatment plan. Its amazing not to be sick and malnourished and and and... all the time. Literally, these folks have helped me attain a quality of life that I used to dream of. Call and see if you can get an appointment and if not, get on the wait list. .

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How did they diagnosis these what symptoms told then thus?
pernicious anemia and "latex cross reactive? Glad you found a diagnosis.

mizzousc88 | @mizzousc88 | Aug 13, 2023

I would ask for colonoscopy to check for microscopic colitis.
Did they check for celiac’s disease when they did the endoscopy?

lisag03 | @lisag03 | Aug 14, 2023

I would ask for a colonoscopy. They can check to see if you have chrons disease or ulcerative colitis. I have had UC for 30 years. Eventually, I developed colon cancer, as your risk increases the longer you have it. Constantly having your colon inflamed is not good. I also follow a gluten and wheat free and low dairy diet. I also take Entyvio infusions every 8 weeks and Mesalamine

gigi4 | @gigi4 | Aug 14, 2023

In reply to @mizzousc88 "I would ask for colonoscopy to check for microscopic colitis. Did they check for celiac’s disease..." + (show)

From what I learned, Celiac disease is usually found with blood tests and genetic testing. I was found gluten intolerant via blood test.

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