Still not diagnosed with bad digestive problems

maybe a plumber could help us? 😩☀️

Hello, Fellow Travelers:

I am sorry to throw a monkey wrench into things, but have you heard of "microscopic colitis" (MC)? I was told ever since childhood that I had IBS and there was nothing my mother could do to help me. When FODMAP diet came along, I went through two courses of evaluation 2 years apart without relief. And I was very diligent with no backsliding. A SIBO test was negative. Then I was finally had a scoping that wasn't negative. Biopsies were taken at the right spots and voila! Microscopic Colitis. Meds didn't work to control it, so I am now on IV Entyvio. Fingers, toes, and eyes all crossed!

I know that it sounds patronizing, but MC really IS a thing. This form of colitis is not seen via a scope during endoscopies - the GI tract looks normal. It is only when biopsies land on the right places that a pathologist can make the diagnosis under a microscope (hence, the name).

* I recently read an article in a European journal called "Maedica: A Journal of Clinical Medicine" about the similarity of IBS-Diarrhea symptoms compared to MC. The article is titled: "Microscopic Colitis – A Missed Diagnosis in Diarrhea-Predominant Irritable Bowel Syndrome". It is a plea for intractable cases of IBS-D to be scoped and examined for MC.

From the article - - -
"Conclusions: All the patients thought to have diarrhea-irritable bowel syndrome should be evaluated for microscopic colitis. Symptomatology is almost superimposable, but a few distinct features can
be noticed. The proper and early diagnosis and the specific treatment may lead to significant clinical
improvement in some difficult cases of the so-called “irritable bowel syndrome”." Volume 7 No.1 2012.

* "Microscopic Colitis" - https://www.mayoclinic.org/diseases-conditions/microscopic-colitis/symptoms-causes/syc-20351478

This may not be your problem, but it might be for some people. All the best!

Oooops! I left out the link to the journal article = https://www.maedica.ro/articles/2012/1/2012_Vol7(10)_No1_pg3-9.pdf

You have done a lot of work to learn. I just got one of my stool test results showing that I show positive for Cdiff B, and she wants me to take 4a day for 2 weeks. Does anyone have suggestions on how to help prevent diarrhea while on it? I feel like I'll be trapped at home. I would really like to have the fecal transplant after my endoscopy, colonoscopy, and ultrasound.

I stumbled into this while researching SIBO and SIFO. Since I value the Mayo Clinic, I clicked on a link that brought me into this discussion. Decided to sign up to offer up my experience as hope for others.

Also writing with hope that clinicians look to the experiences of those suffering to find patterns and solutions, so to end unnecessary suffering.

To those suffering, please hang in there and do not give up on finding a practitioner whom can support you.

To those that hear it's time to restrict your diet, please do not ignore that advice. Thankfully, food is not a go to for comfort for me; so I get it. It's easier for me to be willing to restrict my diet to find ease and grace in my life again. I encourage those that want to skip the restricted diet to look to an elimination diet. If you don't have the ability to do that, try any one of the restricted diets that are offered. If you don't find symptoms improving within a week or less, switch to another diet. Keep trying. Please don't give up. I understand how debilitating impairment of your gut can be.

If you are someone whom has enough energy to look for your own solutions until you can find the medical team that can help you. I highly advise looking to Dr. Mark Pimentel (with Cedars Sinai) and other researchers whom are also clinicians. I've had good luck with some alternative medicine practitioners as well. I've suffered IBS off and on for a decade or more by now. Back then, thank Goodness for the power of the internet and my persistence to find Dr. Sieber (Monash University, Australia). My current diagnosis is IBS-C with reoccurring SIBO. My hope after hearing an interview between Dr. Sieber and Dr. Pimentel is that there are ways to keep SIBO from reoccurring. Even with a previous SIBO diagnosis from a Gastroenterologist in the Washington DC area from about a decade ago, my current rural GP and Gastroenterologist did not know what SIBO was nor know how to test for it nor treat it. Hard to blame a GP for not knowing about it when a Gastroenterologist that was at Duke University for a while didn't even know about SIBO yet. His text book protocol didn't include SIBO, so he put me through an endoscopy, colonoscopy and Barium Swallow -- even after I had my gastro medical records sent to my GP half a year earlier to prove that I had SIBO diagnosed by breath test in the past and that antibiotics had worked for me each of the two times I was treated.

I was crying for help by the end. Me, a middle-aged civil engineer, whom did not cry in public, whom now suffered bouts of anxiety and at times what can only be described as a panic attack and likely even depression. I said that I can't take this anymore, please put me on the antibiotic that wiped this thing out before. It took an ER Doctor to hear my plea and call two (2) different local rural hospitals to find a gastro whom would fit me in.

After the prep for the endoscopy/colonoscopy, I finally felt my peaceful self return. Speaking to my Gastro just before the endo/colon procedure, I was able to explain ... this is as calm as I have felt in ages. Doing that prep alone helped! It seemed so bizarre to feel that calm while I was being prepped to go under anesthesia. After the Barium Swallow proved again, nothing structural to worry about, at the followup appointment ... my Gastro called a colleague in a metropolitan area and asked for guidance, the colleague pointed him to the SIBO breath test and Rifaximin with Neo (forget the name of this accompanying antibiotic). Rifaximin stays in the gut, so it doesn't impact as much of the rest of the body.

That combination gave me my life back once again. Unfortunately, a year later -- SIBO was back! Another test showed I was clearly positive for SIBO with two different gases prevalent.

Both he and the nutritionist that I was working with were of the opinion that I did not have to stay on the Low FODMAP diet that I depended on to keep symptoms at bay. Perhaps the problem is that when constipation occurs so often in your life, you don't even notice it. SIBO returned in less than one year but with a new condition that is still undiagnosed. Since the last bout of antibiotics, the histamine intolerance that my nutritionist noticed I was having based on my response to certain foods worsened. Since we expected I could eat anything after SIBO was over, histamine intolerance was overlooked until a friend reminded me that I had experienced histamine intolerance during SIBO. Maybe the bacterial overgrowth was gone but the histamine intolerance was not? Thank goodness for that friend! Sure enough the overwhelming bouts of fatigue, anxiety, high pulse alarms on my watch, etc., subsided.

Unfortunately, there seems less to be known of this histamine intolerance than there is even about SIBO. I can't tell if it happened after I did Rifaximin without the Neo antibiotic or if it was after having to do another round of antibiotics because the first one didn't seem to get the SIBO. Grateful that medicine is moving forward with better understanding about this but sad for the lost quality of life that happens to so many of us.

Again, please have faith that you have what it takes to get yourself through this if you adapt to your condition. Above all hang in there.

I saw new FM Dr at local chiropractor office last week . Got so many diff tests done then had to go get extensive bloodwork done at lab ( waiting on results), finally seeing a new GI too next Mon Oct 2 nd after 5 month wait . She’s in Orlando, 1 hr 20 min away .
Oh lord between the two of these New Dr’s , I pray 🙏 something gives . How are you feeling ?

You did consider gluten as a problem. But there are other foods you MAY be allergic to. You need to keep a diary for at least a month - everything you ate/and drank in a day & everything that you felt in body, the next day. Even later same day from early food intake -- to determine any sensitivity you have to any food/liquid. This might help you. T

You are lucky you have times when you "can eat whatever you want," that is great. Have you explored an anxiety connection? That really triggers IBS for me. If anxiety is a "thing," for you, consider CBT hypnosis therapy. I just completed seven sessions at GI Psychology in Burke, VA (telehealth only) and I feel like my anxiety trigger is no longer present.

As far as food triggers go, everyone is different. You need to pay attention to what you eat, when you eat it, and how much you eat. I know it is difficult, but that is what is necessary.

Ladydi,
My sister has suffered from Chrons disease for more that 50 years. Recently I started having the same symptoms she’s suffered with. However, I was diagnosed with Exocrine pancreatic insufficiency (EPI). It is just as debilitating as Crohns is. It has taken time to get the right diagnosis. And I am finding that most gastroenterologists are not sympathetic to patients. You have to be persistent and be willing to find a new one if you can’t get any answers. I had to push mine to check for cancer of the pancreas. They found two benign spots, which I will check on again in a year. But if I hadn’t pushed him, he wouldn’t have done anything. I am on meds, but lately they are not working. , so I am pushing him again. He doesn’t get back to me very quickly and I am looking for another doctor. Years ago, I had my sisters doctor, who was the worlds top gastro. Unfortunately, he is now retired. There was a reason he was the top physician. Not only did he know his stuff, he was kind and gentle and explained everything. I wish he were still around. Depending on where you live, you should try to find a doctor connected with a major university or medical center. They usually have more info, are willing to work with you and usually have better attitudes than most. Best of luck to you.

i was put on pain meds for a back issue (resolved) but the pain meds caused a surplus of acid in my stomach. I feel OK, most of the time, but when my stomach is empty (morning) I feel a little something....not pain. Once I eat I have no problems. My doctor gave me a script for a PPI. I haven't taken it as yet and don't think I will after reading what it does and the possible side effects. I think I will just stay on the famotidine that I had in the beginning. Any bad effects from a PPI?? Am I just being too paranoid??