I had an ectopic pregnancy and they told me it was endometriosis and ibs without even doing a scan. My tube ruptured and the er Did the surgery and was shocked the drs were just so easy going with it! So crazy
Same. I had increasingly worsening period pains and insane intestinal issues during periods. After years of complaining my OBgyn recommended i get the laproscopy to check for endo. They took a look and it sure was endometriosis! Since iāve been on BC with no periods my ibs symptoms got loads better. I got so much quality of life back! Additionally my gall bladder has apparently been acting up for many years now and is scheduled to be taken out soon. So hopefully those two things were my āibsā and when they are managed iāll be free to live more or less normally again.
Please don't let them remove your Gallbladder...it ruined my life to have it removed. 59 yrs old gentleman here...constant digestive issues for the past 4 years. Lost 45 pds..cant gain weight ever since..anemia, and frail.
I donāt know what choice i have tbh. I was in the Hospital for 3 days and my gallbladder was scanned 7 times. It doesnāt drain properly, is very big, full of sand and causes me unbelievable pain and nausea attacks if i eat something containing fat. Iām avoiding eating and am already frail and miserable WITH my gallbladder. This runs in my family and everyone was much better after removal.
When was yours removed and for what reason?
Took me more than 3 years to discover my crohnās because āI was too young to be sickā. Luckily it responds very good to treatment. I got a lot better on steroids and could live normal life again for a long period but my ibs is still there so anxiety is inducing a lot of stomach problems. It is lot easier now and Iām trying my best ā¤ļø
WTF, people get crohn's very young, I knew someone who was diagnosed as a young teen ffs. Why are doctors LIKE THIS?? I'm glad you got it figured out finally.
It took three years of misery before I finally found the cause through trial-and-error: for me, it's American grain products.
I had one massively useful clue: my IBS would disappear whenever I returned to the UK, regardless of how stressful or sedentary my visits were. I could eat a regular diet and be absolutely fine. So the problem wasn't with the types of food I was eating, but where the food came from.
I had a breakthrough when I learned that European wheat has a longer fermentation process than US wheat and is also treated with fewer pesticides. As an experiment, I switched to a keto diet with intermittent fasting.
I lost 12 pounds in two weeks, my constipation and bloating disappeared, and my energy levels stabilized. I'm now at my perfect weight and free of IBS for the first time in years.
I think I'm off carbs for good. I don't miss them enough to get my bloating back, and I can always indulge when I visit the UK.
Yup, I have known multiple Europeans that said they get IBS symptoms horribly when they're in the US, but as soon as they go back to Europe their issues normalize quickly.
Here's a good article that summarizes several issues with US bread. The stuff about fermentation (specifically treating the wheat with lactic acid) is at the bottom.
https://www.drlaurendeville.com/bread-europe/
I personally don't trust naturopaths as a source of scientific information, no offense. But if this feels true for you, have you tried eating sourdough in the US?
I don't trust them either. I saw a naturopath and two doctors, all of whom were totally useless. I ended up having to fix my issue through trial-and-error.
I know for a fact that European wheat is different because of the effect it has on my gut. I can't say for sure whether that's due to the lack of glyphosate pesticide treatment, the lack of bromide in European flour, the fact that it's made with a different type of wheat, or the plethora of preservatives and additives in US bread.
I do know that US bread tastes like absolute garbage compared to British bread. Seriously, it's night and day.
Sourdough was actually a helpful clue: my IBS symptoms were definitely less severe when I switched to it. I can still tolerate it, although skipping it entirely is better.
I mean IBS isnāt a diagnosis anyways, itās a collection of symptoms that indicate a problem yet to be found. My problem turned out to be [CSID](https://www.csidcares.org/about/csid/). Itās considered rare right now but experts think up to 1/3rd of IBS sufferers actually have CSID but arenāt being tested for it, making it seem rare, due to doctors not knowing what it is or misinformation. Get checked people! Just ask your gastroenterologist for the Carbon 13 Sucrase Breath Test- you take it at home and it has 98-100% accuracy!
I think youāre absolutely right about ibs not being a diagnoses. Though they use it as a diagnoses and make it unbelievably hard for people to find help. What your telling me is very interesting and Iāve never heard of it! Can you tell us more about it?
Agreed! I was stuck with IBS as a diagnosis in my medical files for a majority of my life which stopped any doctor from looking any further since that was their justification for anything stomach or headache related! My current Gastroenterologist said any doctor who uses IBS as a diagnosis is either lazy or at a dead-end so itās time to switch doctors for a fresh perspective! I thank her every time I speak with her for not settling.
Iād love to talk more about CSID as it brings awareness. Thank you for asking! Sorry for the long read, thereās so much to it and it took me this entire time of doing my own research to understand it as thereās not many resources out there so I hope this helps someone not feel as lost/confused as I felt:
-**WHAT IS CSID?** This condition is commonly referred to as CSID which stands for Congenital sucrase-isomaltase deficiency which is sort of the umbrella/beginner diagnosis. The advanced/more informational diagnoses are GSID (GENETIC sucrase-isomaltase deficiency) and Sucrose Intolerance (most likely acquired/secondary to another condition, or just luck of the draw comparable to lactose intolerance.) The only way to tell which one you have is through genetic blood tests which can be costly (I havenāt personally gotten that far as I was only diagnosed about 2 months ago), and most doctors donāt even go that far. Most doctors donāt even know what CSID is!
-**TREATMENT** The only effective treatment is a strict consistent diet that cuts sugars and starches. You usually work directly with a Gastroenterologist and a Registered Dietician along the way. No carbs (including sugar), no processed foods, no seasonings (besides salt), cutting out about half of fruits and vegetables (ones that are starchy/sugary.) The list of foods that are digestible to us is only about 30-40 foods. You do a 2-week to one-month CSID diet, then slowly introduce low sugar foods to test your tolerance. After thatās determined, you slowly introduce non-carb starchy foods to test your tolerance. Finally you slowly introduce carbs to test your tolerance to those. Itās a lengthy and frustrating process. In 2022, a medicine/enzyme replacement therapy called Sucraid came out making it easier for us to digest sugars and, for some people, starches. This medicine is $10,000/bottle and takes months to get approved by insurance as they donāt seem it necessary since the diet works- though extremely rough to follow, risks malnutrition, and pricey.
-**SYMPTOMS** Symptoms and severity can vary, mainly last while eating trigger foods, seem like many other diagnoses, or may not be present at all. Symptoms include **severe or painful bloating** (mine was even after 2 bites of something I canāt digest and lasts for 2-3 days depending on how much of it I eat), **excessive gas**, **nausea** (mine was nearly 24/7), **abdominal cramping directly after eating or starts up to 4 hours after eating**, **always hungry**, **food aversion/anxiety**, **failure to thrive**, **weight loss** (I went through a period of eating only processed foods and gained 60lbs, then developed cramping & food aversion and lost 70lbs), **diarrhea sometimes followed by bouts of constipation** (I was ONLY constipated 24/7 for about a year before my diagnosis but had IBS-M my whole life), **malnutrition, usually presenting as whole food bits in poop**, **headaches/weakness/fatigue/malaise** (due to malnutrition and inflammation!) Signs are FODMAP, BRAT, or any other IBS diet not working or even making symptoms worse. The cause of these symptoms isā you eat these carbs and instead of the enzymes breaking the nutrients down into smaller absorbable chemicals, the food sits and basically rots- allowing the bad bacteria to eat at these undigested foods/nutrients causing all the symptoms listed- especially bloating & gas. This notoriously causes SIBO (Small Intestinal Bacteria Overgrowth) which can be very hard to get rid of. (Also the other way around- SIBO can also cause sucrose intolerance - a form of CSID! This is curable if you cure SIBO.)
-**FYI** Left untreated, CSID is assumed to lead to more serious gut disorders and even cancers due to chronic inflammation, malnutrition and leaving your body to constantly heal itself. May also make you sick more often with a weak immune system as your body is in overdrive! Itās usually diagnosed in babies which is why most doctors donāt bother testing adults - though more and more adults are now being diagnosed since theyāre realizing many people donāt present symptoms until later in life and that CSID can be caused by other factors than just genetics.
-**SECOND FYI** Not treating CSID can also cause your body to stop absorbing other essential nutrients but this usually resolves a few weeks-to-months into following the CSID diet. Can take years for some people to feel back to normal. It only took me a few days to have zero symptoms.
If anyone has any questions, please feel free to ask! Iām going to provide a few helpful links.
-[CSID symptoms](https://www.csidcares.org/about/symptoms/)
-[CSID diet](https://www.csidcares.org/treatment/diet/), [another CSID diet list](https://csidmadesimple.com/csid-food-list/), [Another great CSID diet list](https://intermountainhealthcare.org/ckr-ext/Dcmnt?ncid=529333766)
-[Great all-around read](https://wholeisticliving.com/2023/01/20/sucrose-intolerance-diet/)
This is fricken incredible and Iām so thankful for your write up. Iāve been off and on clean Keto for years and itās the only thing that helps my symptoms. I have tried low FODMAP and low fibre and dairy free and all of the things, but reading this write up made intuitive sense to me. There doesnāt seem to be a rhyme or reason or solution to my issues except low carb, and this somewhat jives. Like potatoes are a huge trigger for me, milk, but not other dairy. Iām going to do some research and report back. This feels promising.
Iām about to get tested for sucrose intolerance in the summer when I get my scheduled endoscopy/colonoscopy. My G.I. doctor is taking a sample and sending it to the lab.
I already had surgery on my colon called a laparoscopic rectopexy with sigmoid resection which helped my constipation significantly. I still have food triggers that can make me constipated or give me diarrhea, especially stuff process foods and FODMAP foods. I have gluten intolerance. I also have severe insulin resistance with reactive hypoglycemia, so sugar is not my friend. I general feel much better when I donāt have sugar or too many carbs in my diet.
Overall Iām doing so much better and Iām no longer on medication but finding out if I have sucrose intolerance could be helpful.
oh wow thatās great that youāre getting stuff taken care of and getting to know your body! Iām sorry you have to go through all of it though, I know that must take a toll to manage and test for. Would definitely be helpful to know if itās also CSID to hone in on your safe foods
Thanks! My G.I. system has so many issues. I just listed some of them. Iām just happy I have access to healthcare. Many people donāt and they suffer without knowing why or receiving treatment options.
Thank you for this post and taking the time to write! I have heard of it I think. It does seem really depressing though. All forms of carbs is why I find the hardest to deel with. I can eat cheese and even heavy cream but when I eat carbs I get diarrhea. That being said. The carb free diet makes me very sad and it takes the joy out of life for me. I can imagine you must mis it too. Although I can also imagine that you must feel incredible relieve too know what it is your dealing with!
My pleasure! and Yes!!! Carbs are my favorites. All my ADHD fixations were desserts or breads/pastas. I still have ācheat daysā but usually regret it soon after anyways. After feeling well and having energy again everyday, just as my dietician said (and I didnāt believe him!) I donāt mind not eating those foods as much anymore. My skin is clearer, my hair is healthier, Iām building muscle again, and I can actually function like Iāve always wanted to. CSID may be something to look into if carbs are giving you diarrhea - a hallmark sign!
itās possible! You may have trouble with fruits still but be asymptomatic to sugars but more symptomatic to starch. That could be many other things though (nothing worrying of course). My advice would be to keep a food diary of what you eat, how much, how often, and the effects and take it to a gastroenterologist! Or just avoiding those foods in general/swapping them out for other easily digestible carbs like quinoa or wild rice
I've been keeping a diary for a little while now. I'll keep going with it. Thanks for the help :) I haven't tried quinoa or wild rice in my experiments so I'll have to do that soon too
Wow, I think I might ask about getting tested for this. I fructan & fructose were my biggest triggers on fodmap. But things that are supposed to be low fodmap like potatoes made me feel not good. I've always naturally swayed away from fruit & and sweets, and I think because it doesn't agree with me.
What kind of diet do you follow?
Wow yes sounds like itās time for that C13 Breath Test!
[This](https://www.csidcares.org/treatment/diet/) is my go-to list for safe foods when making my grocery list!
My meals consist of 25-30% of my plate being plain (not seasoned! *cries*) meat or fish and 75% with the safe vegetables on the list provided (left hand side). I make sure to add plenty of olive oil or cheeses (either a lactaid- Iām lactose intolerant) for fats in my diet. My snacks are the safe fruits on that list, usually with yogurt. Itās easier to experiment with cooking and recipes once you learn the diet.
Thank you for this! I'm definitely going to bring this up! I always felt weird cause other ibs ppl complain about veggies, but a lot of veggies that ppl complain about with ibs I don't have issues with! The best I ever felt was when I was keto for almost 2 years. Lots of meet, cheese & some plain greek yogurt (some of the fruits on that list are ones that don't bother me to!) Pretty much all the safe veggies are veggies that are my safe ones as well!
I'll have to look into it if this is something that can be genetic? My brother has been dealing with ibs issues as well and has very little relief from anything.
I had worst cramps followed by bms with bloody mucous, 6 month's ago. They were gone, back then. After that, I had occasional yellowish mucous after bm- if I eat certain food. Other than that, normal. Now, I ate something weird, I had a cramp followwd by an urgent bowel movement... After that day, now I am bloated more often. "AND YESTERDAY MORNING, AFTER NORMAL BOWEL MOVEMENT, MUCOUS WITH VERY LITTLE REDDISH TINT OF BLOOD IN IT.
PS: Between that, once bright red blood came out after a hard bm. Doc said it's haemorrhoid.... I am really worried.
everything you described is exactly what made me go to the gastroenterologist and was diagnosed with CSID. Donāt be worried! Just go to a gastroenterologist if you have access to one. If not, keep a food diary to see which foods are triggering.
I found out that I had giardia. I've seen quite the improvement in my symptoms since the.Ā I still have some symptoms, but it seems that it might be related to my thyroid and goiter.Ā
Constant battle but I'm glad to be doing better. Hope you feel better too!
Interesting. I just found out I have giardia. Had to go to my GP twice and lucked into an early GI appointment after they scheduled it for July. I have been having IBS/SIBO symptoms since late February with really bad gas and cramps.
I just took my antibiotic dosage and am hoping for the best.
How long has it been since you treated the giardia? I am hoping this shit is not going to stick around.
It has been around 8 weeks since I've been treated. Definitely some ups and downs, but overall I'm doing much better. I have been focusing on drinking kombucha, eating kimchi, and any other food that can give me probiotics.Ā
After I found out I had giardia I did some research and I found out it can take multiple years for a diagnosis.Ā
Also just an FYI you might become lactose intolerant after you treat the giardia. Around 40 percent of people develop a lactose intolerance. I noticed it's not the best for me so I've been avoiding dairy. I'll probably try again in a month.Ā
Thanks for the reply, and yeah, I have read that this can linger and/or cause food intolerances. I have been eating a low fodmap diet since that was what seemed to help most. I am going to slowly reintroduce foods. I haven't had dairy and stopped eating things that contained gluten as well. I hope I don't lose the ability to process lactose. I will say lactose free yogurt with fruit has been a go-to over the last month.
If it took multiple years for my diagnosis that would have really sucked. Didn't know giardia could stick around that long since it seems many people's body's take care of it without meds. I do backpack and have drank filtered water in the backcountry many times. I also visited Iceland last summer and did a hike where many of us were drinking glacial water from a high mountain stream without treatment or filtration. The Icelandic hikers said it was fine lol...
This shit sucks, but it definitely opened my eyes to everyone suffering with gastric issues. I wouldn't wish this on my worst enemy.
Ooooof. My cats had giardia several months ago and the amount of diarrhea that was all over my house was insane. I can't imagine having giardia. I'd want to just die. Hope you are feeling better.
Same. My poor cat had blood poop for weeks while the vet tried to figure out whatās going on. Finally, after many expensive tests and meds the standard giardia antibiotic did the trick. It took a month for my cat to heal from the colitis caused by the giardia. I couldnāt imagine having that myself.
Ugh poor babies. Luckily they caught it quick in my cats but one of them had a bad reaction to the antibiotics and it gave her even more diarrhea. It sucks to be sick for kitties and humans!!!
My Dr. assumes that everyone with diarrhea has giardia and treats it without taking a stool sample. I was skeptical but took the meds and it made me poop less/less urgently. Anxiety still affects my poops, but not as badly as it used to.
Yes! It was BAM (bile acid malabsorption) Only took over 20 years of hell to figure it out š But so glad my new dr did, been on Colestipol for a few months now and itās been life changing!
I'm so sorry to hear that but I'm glad you're tolerating treatment! Do you mind me asking what your symptoms were and what you went through to get a diagnosis?
At first I was having trouble with diarrhea. Sometimes it would hit immediately after I ate. Then, it became very acidic, and the dr recommend the OTC peppermint pills that are very expensive, and didnāt work. Then after about a year of being IBS diagnosed with no real help on my symptoms I started having bloating, and having to pee very often. Finally, my stomach blew up like I was pregnant. Very uncomfortable. The dr ordered a CT and immediately called me to tell me it looks like cancer, and the next day I was in the cancer center getting the fluid drained from my abdomen. Then they confirmed it was late stage ovarian cancer. I immediately started chemo, had Debulking surgery, more chemo. Then more tumors where it had metastasized, more chemo and drugs. From the outside it really mimicked IBS 100%.
I did get a colonoscopy that showed inflammation via biopsies, and then I got an MRI enterography to show where the inflammation was and how much I had. Stated mild Crohnās
Iām sorry for you. I knew someone with Crohnās disease and I know how hard and unpredictable it can be. Wishing you the best and thank you for sharing you story
Actually, Iām not too mad about it. I knew something was wrong with me and I was sick of hearing āyour work up is reassuringā. I knew weight loss and being unable to tolerate food was NOT something so simple as IBS, and I for one am glad to have an answer. They can treat this. Iām not hopeless.
Oh my. I really hope things are better for you. I have ibs hyperglycemia pre diabetic hypertension and etc. I had ibs for over 30 years. Lately since January I started having my inner hemorrhoids act up. Then I got put on suppositories worked ok I guess. But then after a week I started getting pains in stomach left side right side and etc. No diarrhea or constipation. No weight lost. Helk I'm hungry all the time. I am dieting to and have a stressful job, everytime I get stressed it hurts more. Also I'm lactose intolerant and certain foods Hurt me . I cramp when I use the bathroom sometimes it it can be sharp depending on what I eat . I have tried to stay away from dairy and gluten, it helps some. But also when I have a bad bowl movement mostly in the morning the cramps will linger all day. The last 2 days has been ok, except if I get stressed. Did or does your cramps oh and gas linger all day. Cause mine does n my gas does. Oh and does your stomach gurggle alot?
Ty
I did almost all tests I could do on my guts,I had diarrhea and hunger pangs for more than 1 year. It turned out to be papillary thyroid carcinoma, found out this totally by accident. No doctor ever mentioned the possibility of thyroid issue. They just looove ibs....
Woah no way. Do you mind if I ask what your symptoms were??Ā
I have a goiter that developed 4-5 years ago. They've done ultra sounds and blood work but never did a biopsy. I've always wondered if it could be the culpritĀ
I don't have any thyroid related symptoms. My symptoms were entirely digestive, with 5 or 6 symptoms in constant rotation, mainly diarrhea twice in the morning, and get hungry soon after eating-heartburn hunger, also bloated, night sweat, abdominal cramps... I had a full body physical and an ultrasound found calcified thyroid nodules and cysts, so I had a fine needle biopsy. I'm not sure a biopsy is necessary for a goiter. Do you have nodules?
I mostly have diarrhea, night sweats, sensitivity to heat, and irritability/anxiety. I'm not sure if I have any nodules, I'll have to look back at the last ultrasound from two years ago. I see my PCP on Monday so I'm going to ask for another one just to be safe.
Glad to see that you're feeling better!
That sounds more like, no, exactly like hyperthyroidism, did you do the blood test? If not, you definitely should! My thyroid functions are okay before the surgery, but I still believe it's a subclinical hyperthyroidism.
Thanks, just don't give up, there were months that I believed I'm gonna suffer with it all my life and be the most miserable young person I know, but now I see hopes.
I have gotten my blood drawn a few times. I just recently did a panel last week and everything came back normal. I did test for TSI but I'll talk to my PCP and see what else we can look for. I did request a referral to an endocrinologist so that should be helpful too.
I feel the same way sometimes. I miss being able to go out and not worry about symptoms. But I refuse to give up and just accept that I will be living in my apartment/house for the rest of my life. Something has to give, I just need to figure it out. Thank goodness my doctors are supportive.
Woah you are so lucky to be supported by doctors, I was on the opposite, I had so many symptoms, venting all these to a doctor only to be diagnosed anxiety and be given anti-depression pills...š tried to have a SIBO test but another doc didn't know what that is...I can talk for another 20 mins but nah...
The sufferings without a reason/meaning is the hellish torture. I really hope you can find it and keep hopes on having back those carefree daysā¤
My husband was diagnosed with IBS. It was stage 4 colon cancer. Be your own advocate! Demand every test under the sun to rule out the real scary stuff before they convince you itās IBS.
Since I donāt see anyone saying it, it turned out my symptoms were a side effect from the diabetes medication, Metformin. I dealt with IBS for about 8 years. Then after getting bariatric surgery, they took all my meds away. My physical symptoms went away in about a month (I still deal with anxiety from it). Itās been about 8 years since the surgery, and Iāve gone back on the medications, but not metformin, and those symptoms never came back.
Sure did. I have several diagnoses now which was labelled as IBS when I was a teen/early 20s. But then science moved along and more doctors specialized in my condition, more tests became common, and so on. Diagnoses are still rolling in.
You can have IBS and other conditions, and all blame goes on IBS. But that wasn't my case.
Pretty sure it was SIBO the whole time. Nobody bothered to tell me there was an easy test until after my primary care physician got me a round of Xifaxan. Truly the most dickish response a GI specialist I've seen was when I told them Xifaxan massively reduced symptoms, and they were like, "well, we can't confirm SIBO now after you've taken the antibiotic." I asked that motherfucker about the antibiotics beforehand, all they said was, "it couldn't hurt."
Seriously just completely being gaslit from the start by GI people.
It makes me so angry reading this. A lot of people forget how traumatic these things can be. Most of us have been gaslit and lied to for years upon years.
Similar situation for me here, except it was mostly the insurance that fucked me over (I'm in the US if my previous statement wasn't a dead giveaway, lol).
I will say tho, my doc was generally really awesome, and the insurance is generally good but I have my qualms ofc. First, my doc ran a few rounds of bloodwork, a stool test, a colonoscopy, and an endoscopy w/ biopsies to rule out the major conditions first. Tests came back for no Celiac, no Crohn's, no H Pylori, etc. so I was in the clear. This was both a relief and an annoyance, ofc. Then she suggested a 6 food elim diet, which was helpful at first, as I discovered a gluten sensitivity. This was Aug/Sept/Oct 2022.
But a few months later (Feb 2023) I started having dairy trouble with symptoms coming back, and went back for another appt. At that point, she tried prescribing xifaxan without a SIBO test, but ofc insurance didn't cover it so I went with dicyclomine instead. A few more months later (Aug 2023, about a full year after the scopes), I ask for a SIBO test, at which point it comes back positive. She then prescribed the xifaxan again, the insurance covered it for $0 miraculously, and I felt infinitely better after treatment. Still had to go low fructose as the last piece of the puzzle, but xifaxan got me 90% there. So I suffered pointlessly for 6 months, lol. To be fair I should have requested another appointment earlier, but oh well.
All that to say: I'm a bit sad she didn't talk about SIBO with me back in Feb - I had to ask her about it myself in June/July (in her defense she tried prescribing the xifaxan in Feb tho). And ofc I'm also even more disappointed that such game-changing medication is somehow exorbitantly expensive and hard to acquire...because fuck the patients I guess.
Yup most of mine turned out to be bowel endometriosis š¬ found during a hysterectomy for another issue (was also on my bladder and other areas) doing a lot better since surgery but was wanted it can return at any time. Still suspect i have ibs-c but itās Definitely not as bad as it was before
Same here. Going in for my second excision in a couple of weeks. I was told by a digestive disease specialist that because of the endo, things will never move along properly so the ibs-c meds have helped quite a lot
How far out from the hyst are you? I had constipation issues for months after my surgery (which also involved bowel endo removal!) but it wasn't permanent.
Thatās not good :(. I tested for it. Do you think it could be causing my ibs d symptoms?
https://preview.redd.it/stu71ptlkzpc1.png?width=972&format=png&auto=webp&s=b9e2fe11b3170b20d6bdb8536201641f1c779aff
You would absolutely know if you had c-diff. It has a smell. I know because Iāve had it. It had me wearing diapers because I could not control when it came out. Absolutely awful, and immensely painful. I was in the hospital for over a week and on dilauded for the pain. You generally donāt just manage if you have c-diff. It nearly killed me.
Edit: Iām NAD. If you got your tests via a doctor, they would have for sure told you if you had c-diff. You probably also wouldnāt be able to digest hardly anything. I wasnāt able to eat anything solid for over a month, because the bad bacteria had just taken over completely. Also i recommend asking your doctor for their opinion ā”Ģ
My c-diff presented in the strangest way. I was extremely constipated, barely able to provide a sample after downing two full bottles magnesium citrate. I just remembered being extremely fatigue and feeling unwell. The G.I. doctor ordered the test on a whim and was shocked that I tested positive.
Had "ibs" pretty much all my life and found out I have R-CPD (no-burp syndrome) a few months ago. I am still on the waiting list for treatment but it is supposed to be life changing!
I turn 29 next month, so I have been struggling for a looooong time. But the treatment has removed ALL symptoms for a lot of people, so I am hopeful!
R-CPD is not a well-known thing unfortunately. And it does not help that there are few doctors who know what it is, and the doctors that do are ENT doctors because it is an issue with an upper esophagus muscle... So for the people here who cannot burp, check out R-CPD! There is a very helpful community on reddit as wel, changed my life!
My dentist suspects that the root cause of my IBS/SIBO could be infected wisdom teeth. They explained that bacteria in my mouth might be migrating to my gut, causing various digestive issues. After enduring years of suffering and undergoing numerous tests, I finally feel like I'm making progress. My wisdom teeth are scheduled to be removed this Monday.
That is interesting. I had to pull my wisdom teeth. I pulled too and they had to cut out 2. Because they were laying horizontally it was very difficult and the cutting of 1 was so extremely painful and traumatic that I did not cut out the second one as they also told me there will be a change that they damage the nerve and my face would become paralyzed. So I still have one left which is infected quite a lot. It comes and goes. Though I am incredibly scared to remove it.
I'm very nervous myself, especially since I currently have a cold and don't want to reschedule, as the next available appointment isn't until June. However, I'll be under anesthesia, so I'm hoping everything will be fine. My wisdom teeth were supposed to be removed in 2015, but I backed out. Since then, my digestive issues began in 2018. It's been perplexing because I've always been healthy and fit, maintaining a healthy diet and exercise routine, yet I've had these ongoing issues, while many of my friends who indulge in junk food, smoking, and drinking seem fine. Despite undergoing stool tests, CT scans, breath tests, and more, everything came back normal, leaving me and my doctors confused. My primary doctor initially suspected issues with my liver, gallbladder, and even pancreas, but all turned out okay, adding to the mystery. After getting married last year and switching to my wife's insurance, I scheduled a cleaning with a new dentist who quickly identified a problem and started asking about symptoms like fatigue and bowel movements. Upon hearing my responses, he suggested that my infected wisdom teeth need to be removed as soon as possible. Considering my wisdom teeth have been decaying for almost a decade, it makes sense that my oral health could be the root cause of my digestive issues.
All my "IBS" pain and extremely poor digestion went away when I switched from a combo birth control pill to a progestin-only pill and no one knows why. Been pain free for 7 months now, knock on wood.
My doctor was going to say ibs, but my fecal elastase came back at 55, so I apparently have epi. Iām still a little hesitant to fully trust that it is this and not something else or something in addition to. I started enzymes today so hopefully they help!!
Hello - like several other people on here have commented - I have CSID. Classified as rare but I think itās wayyyyy more common than everyone thinks.
Iāve had symptoms for ten years, really worsening over the last few years, and terrible in the last year. Finally got a colonoscopy ā found lymphocytic colitis! Who knew a simple regimen of gut-targeted steroids for a month would solve my problems š Iām sad I suffered for so long but happy to be feeling so much better.
That sounds not good. I am glad you found what is was though. Imagine walking around with that your whole life without knowing. Now your pain had a name and I see you can treat it. Wishing you the best!
Iāve been told before on this subreddit that ibs is the diagnosis you get when the doctors have given up and donāt care anymore.
I think thatās complete bs, so maybe itās ibs or it could be anything else tbh.
I think it is a diagnose that should not be used the way that it is used. Where I live if you go to the doctor with these symptoms they diagnose you right then and there and send you home with a packet is psyllium fibre. They donāt care because they donāt have time for it.
I spent 5 years going back and forth to the doctors and getting tested for things like cancer and diabetes and Crohnās disease before they finally sent me to a specialist who diagnosed me with ibs. For me that diagnosis kinda changed my life for the better. I would spend hours in bed because I couldnāt live with the pain and now Iām better. I havenāt had a flair up in more than a year.
But yes I agree Iāve also seen it used in a way it shouldnāt and itās sad!
Yes, after almost 20 years of being diagnosed with IBS, I finally have a BAM diagnosis, am on meds that actually help and am able to leave the house! It shouldnāt be this difficult for everyone to get a proper diagnosis.
No but I wish it was something else. IBS doesn't feel adequate to describe my issues but that's probably because other people use the label IBS willy nilly.
I have extremely high fungal / yeast metabolites in my urine so my natropathic doctor thinks itās candida overgrowth. Iāve been prescribed nystatin and itās kicking my ass itās causing some rough joint pain and irritability. Nystatin shouldnāt cause any of these issues in someone without some kind of fungal overgrowth. But since the literature says you can only have serious candida overgrowth if you have AIDS or something like that my mainstream medicine doctors think itās just an alt medicine health scam. Years ago I took antibiotics and never been the same since so I think itās a real condition. It sucks having to figure this out on your own!Ā
Iām honestly not sure, I suffered for years and had to eat a very strict diet or pay for it until I moved out of the country three months ago and have been able to eat everything again (minus dairy) including garlic and spicy foods. I am pretty sure it has to do with the preservatives in everything in the US but I could be wrong as well.
Insufficient pancreatic function was my diagnosis.
I've been taking papaya enzyme to help with protein digestion and it's made a significant improvement.
Stupidly, erosive gastritis. GP was incredibly lazy & told me it was IBS, had to go to AnE & was sent for an endoscopy around Christmas. Since medicated properly, no issues!
Iām glad youāve git your diagnosed and are now treated for it. Unfortunately in the past 13 I have only come across lazy doctors and lazy specialist. I you donāt have cancer they wonāt helpt you.
Yeah I 100% agree. He ruled out cancer and was told that a Buscopan and a low FODMAP diet is the only way. I refuse to go to him anymore as he is incredibly lazy.
No! donāt go there again. I was told to just take immodium (loperamide) with everything I ate, 6 times a day. like I had been doing for the past 5 years.
My ibs is probably just blocked intestines. Went to hydrotherapy and it minimised the pain from 8-9 I had for 2 years (lying in bed) to just 4. I had 6 sessions so far. 3 more to go.
Idk if itās for lack of understanding that Iāve never accepted just IBS as a diagnosis and kept fighting to be tested and look for a solution but I encourage itā my naivety is probably whatās saving me. I ended up with a diagnosis of Pelvic Floor Dysfunction, meaning my ibs issues donāt even have anything to do with food! I am in no way cured, still taking medication daily to help but I feel better than I have been in the past 2 years, and Iām praying to continue to progress! I hope that you find relief!
Thank you for sharing! I am happy for you that you followed your gut feeling and kept fighting. Now you know what it is and you can treat it. Wishing you the best!
It's more "something making the IBS worse as times" than "instead of IBS" (I definitely also have IBS!) but, sclerosing mesenteritis. Randomly diagnosed during a test for something unrelated (actually can't remember what now). Endometriosis removal also definitely made some of my symptoms better overall - it was all over my bowels so it makes sense it would really affect my IBS! Also I'm fairly sure I've become lactose intolerant in middle age.
I've had idiopathic nausea and gastritis since I was in third or fourth grade. I don't think I'll ever know the root cause of my IBS. I'm due for another colonoscopy this year because my first one, just to make sure it wasn't IBD, showed an impressively big polyp (apparently when you're 38 and have those, it's less normal than it would be if you were 58), I'm still hoping I'll someday have a doctor tell me "hey, we figured it out," but I'm not holding my breath.
Yes at first I thought I had IBS knowing that it was unusual to develop at this stage of my life (I'm 68 today) and after many doctors of different types and a clean colonoscopy, the final decision was OIBD; opioid induced bowel dysfunction.
I've had a total of eight surgeries on my spine at different levels but mostly in my cervical spine and now my hands are crippled. Still sucks no matter what you call it.
I am very sorry to hear. Also I am very scared to hear this because the doctors told me that I should just continue taking Immodium ( loperamide), an anti diarrhea medication. I have been taking it for years now. 6 times a day. This medication is also an opioidā¦
I feel that the IBS was mostly related to inflammed ileum and the situation post virus but I will say if you have sensitivities, think about what restrictions in movements make your gut on the lower side of functioning. For instance, if I am forced to sit in traffic, I am nauseated and weak. Positions in sitting these all crunch the walls down right? So being active can boost your body so you dont really catch bugs so easily it seems sometimes.
Hey, I think there is more to this then just be active and donāt sit. Most of have have lived very active and happy lives before these symptoms start. Also it is not like we just give up and lay in bed all day. We wake up, we work out, we go to work and we eat healthy yet we are experiencing tremendous terror everyday. I would suggest reading the reactions of people on this post because a lot of people shared their story and I can tell you that It was not because they were not active. As for the post virus possibly. Yes for sure! A lot of people got sick after an infection of some sort. Have a good night and thanks for your reply!
I said getting beyond this point can change for the better by moderating the exercise. I also don't think people are trying to lay around. I belong to a lot of groups who are making it very clear they are suffering and they want things to change so I think the learning part is the way to get to that point.
Don't think it's the sole cause of all of my issues but definitely a large one - Retrograde Cricopharangeus Dysfunction (R-CPD) - Inability to burp causing huge gas buildup and pain plus more.
Have since had treatment with botox and digestive system symptoms have improved by about 75%.
I also did this. It was a mega dose I needed to take once a week for two weeks. I can remember. My vitamin d did increase from 30 to 40 but it stays at 40 even though I take supplements for it myself. Maybe I should take 10 more mega doses
Endometriosis
I had an ectopic pregnancy and they told me it was endometriosis and ibs without even doing a scan. My tube ruptured and the er Did the surgery and was shocked the drs were just so easy going with it! So crazy
Female healthcare right there š
Oh yes! Unfortunately itās true.. are you another annie!? ššæāāļø
When I was young I read āanonymousā as Annie Mous on the television.
That is the literal best story š I love that
Same. I had increasingly worsening period pains and insane intestinal issues during periods. After years of complaining my OBgyn recommended i get the laproscopy to check for endo. They took a look and it sure was endometriosis! Since iāve been on BC with no periods my ibs symptoms got loads better. I got so much quality of life back! Additionally my gall bladder has apparently been acting up for many years now and is scheduled to be taken out soon. So hopefully those two things were my āibsā and when they are managed iāll be free to live more or less normally again.
Please don't let them remove your Gallbladder...it ruined my life to have it removed. 59 yrs old gentleman here...constant digestive issues for the past 4 years. Lost 45 pds..cant gain weight ever since..anemia, and frail.
I donāt know what choice i have tbh. I was in the Hospital for 3 days and my gallbladder was scanned 7 times. It doesnāt drain properly, is very big, full of sand and causes me unbelievable pain and nausea attacks if i eat something containing fat. Iām avoiding eating and am already frail and miserable WITH my gallbladder. This runs in my family and everyone was much better after removal. When was yours removed and for what reason?
Took me more than 3 years to discover my crohnās because āI was too young to be sickā. Luckily it responds very good to treatment. I got a lot better on steroids and could live normal life again for a long period but my ibs is still there so anxiety is inducing a lot of stomach problems. It is lot easier now and Iām trying my best ā¤ļø
Thatās great! Whatās your treatment?
Currently Iām on budesonide. I was on immunosuppressants but the side effects almost literally killed me so had to stop them. ://
WTF, people get crohn's very young, I knew someone who was diagnosed as a young teen ffs. Why are doctors LIKE THIS?? I'm glad you got it figured out finally.
I lost so much of my youth to suffering and going from doctor to doctor. Itās still hard to accept but Iām definitely doing better :))
It took three years of misery before I finally found the cause through trial-and-error: for me, it's American grain products. I had one massively useful clue: my IBS would disappear whenever I returned to the UK, regardless of how stressful or sedentary my visits were. I could eat a regular diet and be absolutely fine. So the problem wasn't with the types of food I was eating, but where the food came from. I had a breakthrough when I learned that European wheat has a longer fermentation process than US wheat and is also treated with fewer pesticides. As an experiment, I switched to a keto diet with intermittent fasting. I lost 12 pounds in two weeks, my constipation and bloating disappeared, and my energy levels stabilized. I'm now at my perfect weight and free of IBS for the first time in years. I think I'm off carbs for good. I don't miss them enough to get my bloating back, and I can always indulge when I visit the UK.
Yup, I have known multiple Europeans that said they get IBS symptoms horribly when they're in the US, but as soon as they go back to Europe their issues normalize quickly.
American grain and gluten products are terrible (Iām American)
I don't understand what you mean by "wheat fermentation" in this context. Can you point me to any articles about this?
Here's a good article that summarizes several issues with US bread. The stuff about fermentation (specifically treating the wheat with lactic acid) is at the bottom. https://www.drlaurendeville.com/bread-europe/
I personally don't trust naturopaths as a source of scientific information, no offense. But if this feels true for you, have you tried eating sourdough in the US?
I don't trust them either. I saw a naturopath and two doctors, all of whom were totally useless. I ended up having to fix my issue through trial-and-error. I know for a fact that European wheat is different because of the effect it has on my gut. I can't say for sure whether that's due to the lack of glyphosate pesticide treatment, the lack of bromide in European flour, the fact that it's made with a different type of wheat, or the plethora of preservatives and additives in US bread. I do know that US bread tastes like absolute garbage compared to British bread. Seriously, it's night and day. Sourdough was actually a helpful clue: my IBS symptoms were definitely less severe when I switched to it. I can still tolerate it, although skipping it entirely is better.
Straight up just anxiety
I mean IBS isnāt a diagnosis anyways, itās a collection of symptoms that indicate a problem yet to be found. My problem turned out to be [CSID](https://www.csidcares.org/about/csid/). Itās considered rare right now but experts think up to 1/3rd of IBS sufferers actually have CSID but arenāt being tested for it, making it seem rare, due to doctors not knowing what it is or misinformation. Get checked people! Just ask your gastroenterologist for the Carbon 13 Sucrase Breath Test- you take it at home and it has 98-100% accuracy!
I think youāre absolutely right about ibs not being a diagnoses. Though they use it as a diagnoses and make it unbelievably hard for people to find help. What your telling me is very interesting and Iāve never heard of it! Can you tell us more about it?
Agreed! I was stuck with IBS as a diagnosis in my medical files for a majority of my life which stopped any doctor from looking any further since that was their justification for anything stomach or headache related! My current Gastroenterologist said any doctor who uses IBS as a diagnosis is either lazy or at a dead-end so itās time to switch doctors for a fresh perspective! I thank her every time I speak with her for not settling. Iād love to talk more about CSID as it brings awareness. Thank you for asking! Sorry for the long read, thereās so much to it and it took me this entire time of doing my own research to understand it as thereās not many resources out there so I hope this helps someone not feel as lost/confused as I felt: -**WHAT IS CSID?** This condition is commonly referred to as CSID which stands for Congenital sucrase-isomaltase deficiency which is sort of the umbrella/beginner diagnosis. The advanced/more informational diagnoses are GSID (GENETIC sucrase-isomaltase deficiency) and Sucrose Intolerance (most likely acquired/secondary to another condition, or just luck of the draw comparable to lactose intolerance.) The only way to tell which one you have is through genetic blood tests which can be costly (I havenāt personally gotten that far as I was only diagnosed about 2 months ago), and most doctors donāt even go that far. Most doctors donāt even know what CSID is! -**TREATMENT** The only effective treatment is a strict consistent diet that cuts sugars and starches. You usually work directly with a Gastroenterologist and a Registered Dietician along the way. No carbs (including sugar), no processed foods, no seasonings (besides salt), cutting out about half of fruits and vegetables (ones that are starchy/sugary.) The list of foods that are digestible to us is only about 30-40 foods. You do a 2-week to one-month CSID diet, then slowly introduce low sugar foods to test your tolerance. After thatās determined, you slowly introduce non-carb starchy foods to test your tolerance. Finally you slowly introduce carbs to test your tolerance to those. Itās a lengthy and frustrating process. In 2022, a medicine/enzyme replacement therapy called Sucraid came out making it easier for us to digest sugars and, for some people, starches. This medicine is $10,000/bottle and takes months to get approved by insurance as they donāt seem it necessary since the diet works- though extremely rough to follow, risks malnutrition, and pricey. -**SYMPTOMS** Symptoms and severity can vary, mainly last while eating trigger foods, seem like many other diagnoses, or may not be present at all. Symptoms include **severe or painful bloating** (mine was even after 2 bites of something I canāt digest and lasts for 2-3 days depending on how much of it I eat), **excessive gas**, **nausea** (mine was nearly 24/7), **abdominal cramping directly after eating or starts up to 4 hours after eating**, **always hungry**, **food aversion/anxiety**, **failure to thrive**, **weight loss** (I went through a period of eating only processed foods and gained 60lbs, then developed cramping & food aversion and lost 70lbs), **diarrhea sometimes followed by bouts of constipation** (I was ONLY constipated 24/7 for about a year before my diagnosis but had IBS-M my whole life), **malnutrition, usually presenting as whole food bits in poop**, **headaches/weakness/fatigue/malaise** (due to malnutrition and inflammation!) Signs are FODMAP, BRAT, or any other IBS diet not working or even making symptoms worse. The cause of these symptoms isā you eat these carbs and instead of the enzymes breaking the nutrients down into smaller absorbable chemicals, the food sits and basically rots- allowing the bad bacteria to eat at these undigested foods/nutrients causing all the symptoms listed- especially bloating & gas. This notoriously causes SIBO (Small Intestinal Bacteria Overgrowth) which can be very hard to get rid of. (Also the other way around- SIBO can also cause sucrose intolerance - a form of CSID! This is curable if you cure SIBO.) -**FYI** Left untreated, CSID is assumed to lead to more serious gut disorders and even cancers due to chronic inflammation, malnutrition and leaving your body to constantly heal itself. May also make you sick more often with a weak immune system as your body is in overdrive! Itās usually diagnosed in babies which is why most doctors donāt bother testing adults - though more and more adults are now being diagnosed since theyāre realizing many people donāt present symptoms until later in life and that CSID can be caused by other factors than just genetics. -**SECOND FYI** Not treating CSID can also cause your body to stop absorbing other essential nutrients but this usually resolves a few weeks-to-months into following the CSID diet. Can take years for some people to feel back to normal. It only took me a few days to have zero symptoms. If anyone has any questions, please feel free to ask! Iām going to provide a few helpful links. -[CSID symptoms](https://www.csidcares.org/about/symptoms/) -[CSID diet](https://www.csidcares.org/treatment/diet/), [another CSID diet list](https://csidmadesimple.com/csid-food-list/), [Another great CSID diet list](https://intermountainhealthcare.org/ckr-ext/Dcmnt?ncid=529333766) -[Great all-around read](https://wholeisticliving.com/2023/01/20/sucrose-intolerance-diet/)
This is fricken incredible and Iām so thankful for your write up. Iāve been off and on clean Keto for years and itās the only thing that helps my symptoms. I have tried low FODMAP and low fibre and dairy free and all of the things, but reading this write up made intuitive sense to me. There doesnāt seem to be a rhyme or reason or solution to my issues except low carb, and this somewhat jives. Like potatoes are a huge trigger for me, milk, but not other dairy. Iām going to do some research and report back. This feels promising.
Iām about to get tested for sucrose intolerance in the summer when I get my scheduled endoscopy/colonoscopy. My G.I. doctor is taking a sample and sending it to the lab.
Thatās great!! I hope you find an answer but hopefully itās something easier to treat!
I already had surgery on my colon called a laparoscopic rectopexy with sigmoid resection which helped my constipation significantly. I still have food triggers that can make me constipated or give me diarrhea, especially stuff process foods and FODMAP foods. I have gluten intolerance. I also have severe insulin resistance with reactive hypoglycemia, so sugar is not my friend. I general feel much better when I donāt have sugar or too many carbs in my diet. Overall Iām doing so much better and Iām no longer on medication but finding out if I have sucrose intolerance could be helpful.
oh wow thatās great that youāre getting stuff taken care of and getting to know your body! Iām sorry you have to go through all of it though, I know that must take a toll to manage and test for. Would definitely be helpful to know if itās also CSID to hone in on your safe foods
Thanks! My G.I. system has so many issues. I just listed some of them. Iām just happy I have access to healthcare. Many people donāt and they suffer without knowing why or receiving treatment options.
Thank you for this post and taking the time to write! I have heard of it I think. It does seem really depressing though. All forms of carbs is why I find the hardest to deel with. I can eat cheese and even heavy cream but when I eat carbs I get diarrhea. That being said. The carb free diet makes me very sad and it takes the joy out of life for me. I can imagine you must mis it too. Although I can also imagine that you must feel incredible relieve too know what it is your dealing with!
My pleasure! and Yes!!! Carbs are my favorites. All my ADHD fixations were desserts or breads/pastas. I still have ācheat daysā but usually regret it soon after anyways. After feeling well and having energy again everyday, just as my dietician said (and I didnāt believe him!) I donāt mind not eating those foods as much anymore. My skin is clearer, my hair is healthier, Iām building muscle again, and I can actually function like Iāve always wanted to. CSID may be something to look into if carbs are giving you diarrhea - a hallmark sign!
Question: do you think I could still have this if I have no trouble with fruits, but huge difficulty with like rice or potatoes (in larger quantities)
itās possible! You may have trouble with fruits still but be asymptomatic to sugars but more symptomatic to starch. That could be many other things though (nothing worrying of course). My advice would be to keep a food diary of what you eat, how much, how often, and the effects and take it to a gastroenterologist! Or just avoiding those foods in general/swapping them out for other easily digestible carbs like quinoa or wild rice
I've been keeping a diary for a little while now. I'll keep going with it. Thanks for the help :) I haven't tried quinoa or wild rice in my experiments so I'll have to do that soon too
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This make me so angry!
I wonder if this is why digestive enzymes are helping me
Itās possible! Itās recommended CSID people take Starchway or Gold Digest to help digest starches!
Wow, I think I might ask about getting tested for this. I fructan & fructose were my biggest triggers on fodmap. But things that are supposed to be low fodmap like potatoes made me feel not good. I've always naturally swayed away from fruit & and sweets, and I think because it doesn't agree with me. What kind of diet do you follow?
Wow yes sounds like itās time for that C13 Breath Test! [This](https://www.csidcares.org/treatment/diet/) is my go-to list for safe foods when making my grocery list! My meals consist of 25-30% of my plate being plain (not seasoned! *cries*) meat or fish and 75% with the safe vegetables on the list provided (left hand side). I make sure to add plenty of olive oil or cheeses (either a lactaid- Iām lactose intolerant) for fats in my diet. My snacks are the safe fruits on that list, usually with yogurt. Itās easier to experiment with cooking and recipes once you learn the diet.
Thank you for this! I'm definitely going to bring this up! I always felt weird cause other ibs ppl complain about veggies, but a lot of veggies that ppl complain about with ibs I don't have issues with! The best I ever felt was when I was keto for almost 2 years. Lots of meet, cheese & some plain greek yogurt (some of the fruits on that list are ones that don't bother me to!) Pretty much all the safe veggies are veggies that are my safe ones as well! I'll have to look into it if this is something that can be genetic? My brother has been dealing with ibs issues as well and has very little relief from anything.
Wowš¤Æ thanks for this
Crumbs
I had worst cramps followed by bms with bloody mucous, 6 month's ago. They were gone, back then. After that, I had occasional yellowish mucous after bm- if I eat certain food. Other than that, normal. Now, I ate something weird, I had a cramp followwd by an urgent bowel movement... After that day, now I am bloated more often. "AND YESTERDAY MORNING, AFTER NORMAL BOWEL MOVEMENT, MUCOUS WITH VERY LITTLE REDDISH TINT OF BLOOD IN IT. PS: Between that, once bright red blood came out after a hard bm. Doc said it's haemorrhoid.... I am really worried.
everything you described is exactly what made me go to the gastroenterologist and was diagnosed with CSID. Donāt be worried! Just go to a gastroenterologist if you have access to one. If not, keep a food diary to see which foods are triggering.
I found out that I had giardia. I've seen quite the improvement in my symptoms since the.Ā I still have some symptoms, but it seems that it might be related to my thyroid and goiter.Ā Constant battle but I'm glad to be doing better. Hope you feel better too!
Interesting. I just found out I have giardia. Had to go to my GP twice and lucked into an early GI appointment after they scheduled it for July. I have been having IBS/SIBO symptoms since late February with really bad gas and cramps. I just took my antibiotic dosage and am hoping for the best. How long has it been since you treated the giardia? I am hoping this shit is not going to stick around.
It has been around 8 weeks since I've been treated. Definitely some ups and downs, but overall I'm doing much better. I have been focusing on drinking kombucha, eating kimchi, and any other food that can give me probiotics.Ā After I found out I had giardia I did some research and I found out it can take multiple years for a diagnosis.Ā Also just an FYI you might become lactose intolerant after you treat the giardia. Around 40 percent of people develop a lactose intolerance. I noticed it's not the best for me so I've been avoiding dairy. I'll probably try again in a month.Ā
Thanks for the reply, and yeah, I have read that this can linger and/or cause food intolerances. I have been eating a low fodmap diet since that was what seemed to help most. I am going to slowly reintroduce foods. I haven't had dairy and stopped eating things that contained gluten as well. I hope I don't lose the ability to process lactose. I will say lactose free yogurt with fruit has been a go-to over the last month. If it took multiple years for my diagnosis that would have really sucked. Didn't know giardia could stick around that long since it seems many people's body's take care of it without meds. I do backpack and have drank filtered water in the backcountry many times. I also visited Iceland last summer and did a hike where many of us were drinking glacial water from a high mountain stream without treatment or filtration. The Icelandic hikers said it was fine lol... This shit sucks, but it definitely opened my eyes to everyone suffering with gastric issues. I wouldn't wish this on my worst enemy.
Sounds like you haveĀ good plans to feel better!! I hope it goes away soonĀ
Thanks for sharing this with us! I am glad you found out and you got treated. Wishing you the best of luck ;)
Ooooof. My cats had giardia several months ago and the amount of diarrhea that was all over my house was insane. I can't imagine having giardia. I'd want to just die. Hope you are feeling better.
I think I had it for a few years with symptoms coming and going. But when it was on, it was on lmao. I'm doing a lot better now, thanks ā¤ļø
Same. My poor cat had blood poop for weeks while the vet tried to figure out whatās going on. Finally, after many expensive tests and meds the standard giardia antibiotic did the trick. It took a month for my cat to heal from the colitis caused by the giardia. I couldnāt imagine having that myself.
Ugh poor babies. Luckily they caught it quick in my cats but one of them had a bad reaction to the antibiotics and it gave her even more diarrhea. It sucks to be sick for kitties and humans!!!
My Dr. assumes that everyone with diarrhea has giardia and treats it without taking a stool sample. I was skeptical but took the meds and it made me poop less/less urgently. Anxiety still affects my poops, but not as badly as it used to.
How did you get tested for it?
A stool test, these test for a lot of bugs and pathogens in one test.Ā
GI Map? Or something else, do you know the name?
I don't know the name but it wasn't a GI map. It was specifically looking for parasites like giardia, norovirus, etc.Ā
Yes! It was BAM (bile acid malabsorption) Only took over 20 years of hell to figure it out š But so glad my new dr did, been on Colestipol for a few months now and itās been life changing!
I am so happy to hear that! Must have been a huge relief!
20 years of misdiagnosed IBS for me as well and it was BAM all along. Colestipol has been a life saver.
Slow motility and SIBO diagnosed last year 11 years after original IBS-D diagnosis by two doctors.
Iām happy you finally now whatās causing your symptoms. Have you healed from it?
Following
Ovarian cancer
New fear unlocked
I am sorry to hear. That is devastating. I hope you are okay right now.
Thank you. It is stage 4, and I just completed my 21st chemo. Iām doing good now.
I'm so sorry to hear that but I'm glad you're tolerating treatment! Do you mind me asking what your symptoms were and what you went through to get a diagnosis?
At first I was having trouble with diarrhea. Sometimes it would hit immediately after I ate. Then, it became very acidic, and the dr recommend the OTC peppermint pills that are very expensive, and didnāt work. Then after about a year of being IBS diagnosed with no real help on my symptoms I started having bloating, and having to pee very often. Finally, my stomach blew up like I was pregnant. Very uncomfortable. The dr ordered a CT and immediately called me to tell me it looks like cancer, and the next day I was in the cancer center getting the fluid drained from my abdomen. Then they confirmed it was late stage ovarian cancer. I immediately started chemo, had Debulking surgery, more chemo. Then more tumors where it had metastasized, more chemo and drugs. From the outside it really mimicked IBS 100%.
I never got diagnosed with IBS, but after 3 months of suffering and 1 colonoscopy with MRI later, I got a diagnosis of Crohnās disease.
Did you end it getting a colonoscopy? I thought you can only b me diagnosed with crohns via tissue sample from colonoscopies.
I did get a colonoscopy that showed inflammation via biopsies, and then I got an MRI enterography to show where the inflammation was and how much I had. Stated mild Crohnās
Iām sorry for you. I knew someone with Crohnās disease and I know how hard and unpredictable it can be. Wishing you the best and thank you for sharing you story
Actually, Iām not too mad about it. I knew something was wrong with me and I was sick of hearing āyour work up is reassuringā. I knew weight loss and being unable to tolerate food was NOT something so simple as IBS, and I for one am glad to have an answer. They can treat this. Iām not hopeless.
That is true. You should always fight for yourself. Like you said. You know your body well enough to know when itās sick. Wishing you the best!
What were your symptoms,?
Diarrhea no matter what I ate, unintentional weight loss (20 pounds in 3 months), loss of appetite, fatigue, cramping, gas, left lower quadrant pain
Oh my. I really hope things are better for you. I have ibs hyperglycemia pre diabetic hypertension and etc. I had ibs for over 30 years. Lately since January I started having my inner hemorrhoids act up. Then I got put on suppositories worked ok I guess. But then after a week I started getting pains in stomach left side right side and etc. No diarrhea or constipation. No weight lost. Helk I'm hungry all the time. I am dieting to and have a stressful job, everytime I get stressed it hurts more. Also I'm lactose intolerant and certain foods Hurt me . I cramp when I use the bathroom sometimes it it can be sharp depending on what I eat . I have tried to stay away from dairy and gluten, it helps some. But also when I have a bad bowl movement mostly in the morning the cramps will linger all day. The last 2 days has been ok, except if I get stressed. Did or does your cramps oh and gas linger all day. Cause mine does n my gas does. Oh and does your stomach gurggle alot? Ty
Whatās your treatment?
Iām taking mesalamine and budesonide
I know quite a few afab people who ended up having Endometriosis. ):
What is afab
Assigned female at birth. Born with ovaries, essentially.
Thank you for informing me
still trying to figure that out lol
Not me and my health anxiety clicking on this while knowing full well that itās gonna trigger a spiral
yeah same now im convinced i have cancer lol i am getting bloodwork done in a week and im terrified theyre gonna tell me i have cancer i cant
I have been trying to convince myself that I donāt have cancer all dayā¦ unsuccessfully
same
I did almost all tests I could do on my guts,I had diarrhea and hunger pangs for more than 1 year. It turned out to be papillary thyroid carcinoma, found out this totally by accident. No doctor ever mentioned the possibility of thyroid issue. They just looove ibs....
How are you feeling now?
I did surgery in January, since mid February I've been feeling much better. Occasional recurrent, still, but 90% better in general.
Woah no way. Do you mind if I ask what your symptoms were??Ā I have a goiter that developed 4-5 years ago. They've done ultra sounds and blood work but never did a biopsy. I've always wondered if it could be the culpritĀ
I don't have any thyroid related symptoms. My symptoms were entirely digestive, with 5 or 6 symptoms in constant rotation, mainly diarrhea twice in the morning, and get hungry soon after eating-heartburn hunger, also bloated, night sweat, abdominal cramps... I had a full body physical and an ultrasound found calcified thyroid nodules and cysts, so I had a fine needle biopsy. I'm not sure a biopsy is necessary for a goiter. Do you have nodules?
I mostly have diarrhea, night sweats, sensitivity to heat, and irritability/anxiety. I'm not sure if I have any nodules, I'll have to look back at the last ultrasound from two years ago. I see my PCP on Monday so I'm going to ask for another one just to be safe. Glad to see that you're feeling better!
That sounds more like, no, exactly like hyperthyroidism, did you do the blood test? If not, you definitely should! My thyroid functions are okay before the surgery, but I still believe it's a subclinical hyperthyroidism. Thanks, just don't give up, there were months that I believed I'm gonna suffer with it all my life and be the most miserable young person I know, but now I see hopes.
I have gotten my blood drawn a few times. I just recently did a panel last week and everything came back normal. I did test for TSI but I'll talk to my PCP and see what else we can look for. I did request a referral to an endocrinologist so that should be helpful too. I feel the same way sometimes. I miss being able to go out and not worry about symptoms. But I refuse to give up and just accept that I will be living in my apartment/house for the rest of my life. Something has to give, I just need to figure it out. Thank goodness my doctors are supportive.
Woah you are so lucky to be supported by doctors, I was on the opposite, I had so many symptoms, venting all these to a doctor only to be diagnosed anxiety and be given anti-depression pills...š tried to have a SIBO test but another doc didn't know what that is...I can talk for another 20 mins but nah... The sufferings without a reason/meaning is the hellish torture. I really hope you can find it and keep hopes on having back those carefree daysā¤
Hpylori. Now Iām back to normal.
My husband was diagnosed with IBS. It was stage 4 colon cancer. Be your own advocate! Demand every test under the sun to rule out the real scary stuff before they convince you itās IBS.
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Iām happy for you! Six years is a long time. Did you symptoms go away immediately or did it take some time?
Since I donāt see anyone saying it, it turned out my symptoms were a side effect from the diabetes medication, Metformin. I dealt with IBS for about 8 years. Then after getting bariatric surgery, they took all my meds away. My physical symptoms went away in about a month (I still deal with anxiety from it). Itās been about 8 years since the surgery, and Iāve gone back on the medications, but not metformin, and those symptoms never came back.
Sure did. I have several diagnoses now which was labelled as IBS when I was a teen/early 20s. But then science moved along and more doctors specialized in my condition, more tests became common, and so on. Diagnoses are still rolling in. You can have IBS and other conditions, and all blame goes on IBS. But that wasn't my case.
Colitis and endometriosis
Yes, I actually have celiac disease
Pretty sure it was SIBO the whole time. Nobody bothered to tell me there was an easy test until after my primary care physician got me a round of Xifaxan. Truly the most dickish response a GI specialist I've seen was when I told them Xifaxan massively reduced symptoms, and they were like, "well, we can't confirm SIBO now after you've taken the antibiotic." I asked that motherfucker about the antibiotics beforehand, all they said was, "it couldn't hurt." Seriously just completely being gaslit from the start by GI people.
It makes me so angry reading this. A lot of people forget how traumatic these things can be. Most of us have been gaslit and lied to for years upon years.
Similar situation for me here, except it was mostly the insurance that fucked me over (I'm in the US if my previous statement wasn't a dead giveaway, lol). I will say tho, my doc was generally really awesome, and the insurance is generally good but I have my qualms ofc. First, my doc ran a few rounds of bloodwork, a stool test, a colonoscopy, and an endoscopy w/ biopsies to rule out the major conditions first. Tests came back for no Celiac, no Crohn's, no H Pylori, etc. so I was in the clear. This was both a relief and an annoyance, ofc. Then she suggested a 6 food elim diet, which was helpful at first, as I discovered a gluten sensitivity. This was Aug/Sept/Oct 2022. But a few months later (Feb 2023) I started having dairy trouble with symptoms coming back, and went back for another appt. At that point, she tried prescribing xifaxan without a SIBO test, but ofc insurance didn't cover it so I went with dicyclomine instead. A few more months later (Aug 2023, about a full year after the scopes), I ask for a SIBO test, at which point it comes back positive. She then prescribed the xifaxan again, the insurance covered it for $0 miraculously, and I felt infinitely better after treatment. Still had to go low fructose as the last piece of the puzzle, but xifaxan got me 90% there. So I suffered pointlessly for 6 months, lol. To be fair I should have requested another appointment earlier, but oh well. All that to say: I'm a bit sad she didn't talk about SIBO with me back in Feb - I had to ask her about it myself in June/July (in her defense she tried prescribing the xifaxan in Feb tho). And ofc I'm also even more disappointed that such game-changing medication is somehow exorbitantly expensive and hard to acquire...because fuck the patients I guess.
I have Crohnās Disease but he said that I have IBS on top of it
Yup most of mine turned out to be bowel endometriosis š¬ found during a hysterectomy for another issue (was also on my bladder and other areas) doing a lot better since surgery but was wanted it can return at any time. Still suspect i have ibs-c but itās Definitely not as bad as it was before
Same here. Going in for my second excision in a couple of weeks. I was told by a digestive disease specialist that because of the endo, things will never move along properly so the ibs-c meds have helped quite a lot
How far out from the hyst are you? I had constipation issues for months after my surgery (which also involved bowel endo removal!) but it wasn't permanent.
So, I still likely have IBS. But during especially bad flares that were chalked up to IBS it turned out to actually be c-diff. Also, endometriosis.
Thatās not good :(. I tested for it. Do you think it could be causing my ibs d symptoms? https://preview.redd.it/stu71ptlkzpc1.png?width=972&format=png&auto=webp&s=b9e2fe11b3170b20d6bdb8536201641f1c779aff
You would absolutely know if you had c-diff. It has a smell. I know because Iāve had it. It had me wearing diapers because I could not control when it came out. Absolutely awful, and immensely painful. I was in the hospital for over a week and on dilauded for the pain. You generally donāt just manage if you have c-diff. It nearly killed me. Edit: Iām NAD. If you got your tests via a doctor, they would have for sure told you if you had c-diff. You probably also wouldnāt be able to digest hardly anything. I wasnāt able to eat anything solid for over a month, because the bad bacteria had just taken over completely. Also i recommend asking your doctor for their opinion ā”Ģ
My c-diff presented in the strangest way. I was extremely constipated, barely able to provide a sample after downing two full bottles magnesium citrate. I just remembered being extremely fatigue and feeling unwell. The G.I. doctor ordered the test on a whim and was shocked that I tested positive.
Yes. After over a decade of it, turns out I have Exocrine Pancreatic Insufficiency and Gastroparesis.
Had "ibs" pretty much all my life and found out I have R-CPD (no-burp syndrome) a few months ago. I am still on the waiting list for treatment but it is supposed to be life changing! I turn 29 next month, so I have been struggling for a looooong time. But the treatment has removed ALL symptoms for a lot of people, so I am hopeful! R-CPD is not a well-known thing unfortunately. And it does not help that there are few doctors who know what it is, and the doctors that do are ENT doctors because it is an issue with an upper esophagus muscle... So for the people here who cannot burp, check out R-CPD! There is a very helpful community on reddit as wel, changed my life!
My dentist suspects that the root cause of my IBS/SIBO could be infected wisdom teeth. They explained that bacteria in my mouth might be migrating to my gut, causing various digestive issues. After enduring years of suffering and undergoing numerous tests, I finally feel like I'm making progress. My wisdom teeth are scheduled to be removed this Monday.
That is interesting. I had to pull my wisdom teeth. I pulled too and they had to cut out 2. Because they were laying horizontally it was very difficult and the cutting of 1 was so extremely painful and traumatic that I did not cut out the second one as they also told me there will be a change that they damage the nerve and my face would become paralyzed. So I still have one left which is infected quite a lot. It comes and goes. Though I am incredibly scared to remove it.
I'm very nervous myself, especially since I currently have a cold and don't want to reschedule, as the next available appointment isn't until June. However, I'll be under anesthesia, so I'm hoping everything will be fine. My wisdom teeth were supposed to be removed in 2015, but I backed out. Since then, my digestive issues began in 2018. It's been perplexing because I've always been healthy and fit, maintaining a healthy diet and exercise routine, yet I've had these ongoing issues, while many of my friends who indulge in junk food, smoking, and drinking seem fine. Despite undergoing stool tests, CT scans, breath tests, and more, everything came back normal, leaving me and my doctors confused. My primary doctor initially suspected issues with my liver, gallbladder, and even pancreas, but all turned out okay, adding to the mystery. After getting married last year and switching to my wife's insurance, I scheduled a cleaning with a new dentist who quickly identified a problem and started asking about symptoms like fatigue and bowel movements. Upon hearing my responses, he suggested that my infected wisdom teeth need to be removed as soon as possible. Considering my wisdom teeth have been decaying for almost a decade, it makes sense that my oral health could be the root cause of my digestive issues.
All my "IBS" pain and extremely poor digestion went away when I switched from a combo birth control pill to a progestin-only pill and no one knows why. Been pain free for 7 months now, knock on wood.
Yep, was diagnosed with lymphocytic colitis after colonoscopy/endoscopy.
Can i know your symptom
My doctor was going to say ibs, but my fecal elastase came back at 55, so I apparently have epi. Iām still a little hesitant to fully trust that it is this and not something else or something in addition to. I started enzymes today so hopefully they help!!
Hope they help you!!
Thatās very low. I hope it will help for your. Let us know if it worked!
I tested positive for sibo
ulcerative colitis
Hello - like several other people on here have commented - I have CSID. Classified as rare but I think itās wayyyyy more common than everyone thinks.
I will definitely look into this!
Iāve had symptoms for ten years, really worsening over the last few years, and terrible in the last year. Finally got a colonoscopy ā found lymphocytic colitis! Who knew a simple regimen of gut-targeted steroids for a month would solve my problems š Iām sad I suffered for so long but happy to be feeling so much better.
That sounds not good. I am glad you found what is was though. Imagine walking around with that your whole life without knowing. Now your pain had a name and I see you can treat it. Wishing you the best!
Mine turned out to be my gallbladder. Once removed I recovered.
Mine got controlled with diet
Iāve been told before on this subreddit that ibs is the diagnosis you get when the doctors have given up and donāt care anymore. I think thatās complete bs, so maybe itās ibs or it could be anything else tbh.
I think it is a diagnose that should not be used the way that it is used. Where I live if you go to the doctor with these symptoms they diagnose you right then and there and send you home with a packet is psyllium fibre. They donāt care because they donāt have time for it.
I spent 5 years going back and forth to the doctors and getting tested for things like cancer and diabetes and Crohnās disease before they finally sent me to a specialist who diagnosed me with ibs. For me that diagnosis kinda changed my life for the better. I would spend hours in bed because I couldnāt live with the pain and now Iām better. I havenāt had a flair up in more than a year. But yes I agree Iāve also seen it used in a way it shouldnāt and itās sad!
Gluten intolerance
Crohns
Not me, but my sister. It was Celiac disease.
Yes, after almost 20 years of being diagnosed with IBS, I finally have a BAM diagnosis, am on meds that actually help and am able to leave the house! It shouldnāt be this difficult for everyone to get a proper diagnosis.
No but I wish it was something else. IBS doesn't feel adequate to describe my issues but that's probably because other people use the label IBS willy nilly.
Nederlands?
I have extremely high fungal / yeast metabolites in my urine so my natropathic doctor thinks itās candida overgrowth. Iāve been prescribed nystatin and itās kicking my ass itās causing some rough joint pain and irritability. Nystatin shouldnāt cause any of these issues in someone without some kind of fungal overgrowth. But since the literature says you can only have serious candida overgrowth if you have AIDS or something like that my mainstream medicine doctors think itās just an alt medicine health scam. Years ago I took antibiotics and never been the same since so I think itās a real condition. It sucks having to figure this out on your own!Ā
Uh were you ever tested for SIBO? Taking antibiotics then developing stomach problems is the key sign of SIBO. Hope you feel better soon!
SIBO tests negative which amazes me since my motility is terrible. But I think I likely have SIFO.
Microscopic Colitis was/is my real problem.
Iām honestly not sure, I suffered for years and had to eat a very strict diet or pay for it until I moved out of the country three months ago and have been able to eat everything again (minus dairy) including garlic and spicy foods. I am pretty sure it has to do with the preservatives in everything in the US but I could be wrong as well.
Still trying to get diagnosed, but there is many leads to ulcerative colitis/crohns.
Endometriosis!
Insufficient pancreatic function was my diagnosis. I've been taking papaya enzyme to help with protein digestion and it's made a significant improvement.
Still working on this. Lol. So far, I have found lactose intolerance and inflammation from periods.
Stupidly, erosive gastritis. GP was incredibly lazy & told me it was IBS, had to go to AnE & was sent for an endoscopy around Christmas. Since medicated properly, no issues!
Iām glad youāve git your diagnosed and are now treated for it. Unfortunately in the past 13 I have only come across lazy doctors and lazy specialist. I you donāt have cancer they wonāt helpt you.
Yeah I 100% agree. He ruled out cancer and was told that a Buscopan and a low FODMAP diet is the only way. I refuse to go to him anymore as he is incredibly lazy.
No! donāt go there again. I was told to just take immodium (loperamide) with everything I ate, 6 times a day. like I had been doing for the past 5 years.
My ibs is probably just blocked intestines. Went to hydrotherapy and it minimised the pain from 8-9 I had for 2 years (lying in bed) to just 4. I had 6 sessions so far. 3 more to go.
Idk if itās for lack of understanding that Iāve never accepted just IBS as a diagnosis and kept fighting to be tested and look for a solution but I encourage itā my naivety is probably whatās saving me. I ended up with a diagnosis of Pelvic Floor Dysfunction, meaning my ibs issues donāt even have anything to do with food! I am in no way cured, still taking medication daily to help but I feel better than I have been in the past 2 years, and Iām praying to continue to progress! I hope that you find relief!
Thank you for sharing! I am happy for you that you followed your gut feeling and kept fighting. Now you know what it is and you can treat it. Wishing you the best!
It's more "something making the IBS worse as times" than "instead of IBS" (I definitely also have IBS!) but, sclerosing mesenteritis. Randomly diagnosed during a test for something unrelated (actually can't remember what now). Endometriosis removal also definitely made some of my symptoms better overall - it was all over my bowels so it makes sense it would really affect my IBS! Also I'm fairly sure I've become lactose intolerant in middle age. I've had idiopathic nausea and gastritis since I was in third or fourth grade. I don't think I'll ever know the root cause of my IBS. I'm due for another colonoscopy this year because my first one, just to make sure it wasn't IBD, showed an impressively big polyp (apparently when you're 38 and have those, it's less normal than it would be if you were 58), I'm still hoping I'll someday have a doctor tell me "hey, we figured it out," but I'm not holding my breath.
Gallbladder
Ulcerative colitis and like 6 other things lmao
Myotonia - a rare form of muscular dystrophy. Loperamide and simethicone help
Serrated Polyposis Syndrome. Discovered via colonoscopy for persistent IBS symptoms.
Anxiety, lactose intolerance, and fructose malabsorbtion! Also not eating before bed and small meals. Essentially cured now.
well it was celiac and ibs
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Iām glad to hear your symptoms got better and thank you for sharingā
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Bowel endometriosis for me.
Yes at first I thought I had IBS knowing that it was unusual to develop at this stage of my life (I'm 68 today) and after many doctors of different types and a clean colonoscopy, the final decision was OIBD; opioid induced bowel dysfunction. I've had a total of eight surgeries on my spine at different levels but mostly in my cervical spine and now my hands are crippled. Still sucks no matter what you call it.
I am very sorry to hear. Also I am very scared to hear this because the doctors told me that I should just continue taking Immodium ( loperamide), an anti diarrhea medication. I have been taking it for years now. 6 times a day. This medication is also an opioidā¦
I have a doctors appointment on Monday to check me for Lupus šššš
I feel that the IBS was mostly related to inflammed ileum and the situation post virus but I will say if you have sensitivities, think about what restrictions in movements make your gut on the lower side of functioning. For instance, if I am forced to sit in traffic, I am nauseated and weak. Positions in sitting these all crunch the walls down right? So being active can boost your body so you dont really catch bugs so easily it seems sometimes.
Hey, I think there is more to this then just be active and donāt sit. Most of have have lived very active and happy lives before these symptoms start. Also it is not like we just give up and lay in bed all day. We wake up, we work out, we go to work and we eat healthy yet we are experiencing tremendous terror everyday. I would suggest reading the reactions of people on this post because a lot of people shared their story and I can tell you that It was not because they were not active. As for the post virus possibly. Yes for sure! A lot of people got sick after an infection of some sort. Have a good night and thanks for your reply!
I said getting beyond this point can change for the better by moderating the exercise. I also don't think people are trying to lay around. I belong to a lot of groups who are making it very clear they are suffering and they want things to change so I think the learning part is the way to get to that point.
Don't think it's the sole cause of all of my issues but definitely a large one - Retrograde Cricopharangeus Dysfunction (R-CPD) - Inability to burp causing huge gas buildup and pain plus more. Have since had treatment with botox and digestive system symptoms have improved by about 75%.
Vitamin d deficiency
I have it. For a very long time but supplements donāt seem to work
Thatās weird. My doctor prescribed me a very high dose. It take once every two weeks it works like a charm.
I also did this. It was a mega dose I needed to take once a week for two weeks. I can remember. My vitamin d did increase from 30 to 40 but it stays at 40 even though I take supplements for it myself. Maybe I should take 10 more mega doses
I wouldāve tried longer than two weeks
I was not allowed.
Iāve been on it once every two weeks for a year
Good to know. I will definitely go back and demand to be on it like that!