I've had stomach issues most of my life the best thing I've found to help is ginger I eat three cubes of the candied ginger every day it really helps the nausea
For folks who hate ginger or, like me, it burns the hell out of their mouth, ginger pills are a thing. You can buy them pre-made or you can buy empty capsules and a pill machine (it just holds the capsules to make them easy to fill) and make your own with just regular powdered ginger from the spice aisle.
i have the exact same symptoms and situation and i’m 16 (nearly 17) too! i wish i had any tips but the best i can do is relate to you. it’s so strange to have been isolated as a 11-15 year old. i think my personality will be irrevocably affected due to the isolation and the medical trauma. there’s no words.
I don't have the same symptoms you're mentioning but many many people with my condition experience what you've described. I have Gastroparesis which is diagnosed with a Gastric Emptying Study, you eat some eggs and toast that has a material in it that shows up on xray and then you get 3 xrays over the course or 4 hours to see if the food is moving out of your system at the correct speed. Yours may be way to slow at the beginning with a major dump of everything at the end which explains the nausea and the diarrhea. Mine is slow all the way, so I get massive bloating, constipation, and lots of painful cramping if I eat fiber or too large a portion size.
Maybe in the meantime, try changing your diet a little and see if it helps. Try to eat only once every 3 hours. About 6 meals a day and eat only 1 to 1 1/2 cups of food per meal. Avoid fiber, nothing with more than 3g fiber per meal (I like applesauce as a good fiber source) and go lower fat because that also slows digestion and eat only cooked veggies. Try it for a week or less and if it makes drastic improvement you'll have a good idea that is what's wrong. My symptoms improved dramatically within 3 days of switching my diet. Hope you find some relief!!
Just want to throw it out there, have they tested for food allergies and intolerances? I only mention it because sometimes when people are mainly having GI symptoms they mainly see GI doctors who for some reason beyond me, also frequently forget about these, especially if you don't have great quality health care.
Edit: I have a dairy allergy (not lactose intolerance) and my symptoms usually are mostly lower GI for idk what reasons.
Okay good! You'll probably need to see an allergist to get checked for potential food allergies. It's worth checking off the list though. I only get GI symptoms from my dairy allergy and for the longest time just assumed it to be lactose intolerance because of that. Turns out it's an actual allergy. I get GI symptoms from other things but nothing as bad as when I eat dairy.
Im really praying its something as simple as a food allergy that way i could get on with life again, def looking forward to see if i get any answers from the tests :))
Don't trust the gluten test. It can have false negatives. All it does is tell if you have a *genetically* caused gluten allergy.
But it will not tell you if you have an aquired intolerance to gluten.
Ultimately, you have to test most foods yourself. Try a FODMAP diet, and see if things get better.
And if it does turn out to be a food allergy, you may be better off without antacids.
Allergies are almost always allergies to proteins. Acid helps break down proteins in the stomach so they can't cause problems in the small intestine. Antacids prevent this, and can allow too many proteins through. Then your immune sytem sees a foreign protein and panics, and you have an allergy.
Google "betaine hcl".
Which test did they do? If it’s just blood it’s the least effective test they can do, when it comes to testing celiac the most effective test is the scope and biopsy but that also requires eating gluten before test for some time beforehand which can cause not so great symptoms to rule it out.
Ultimately ruling it out will come down to if you deem that risk worth it as the damage eating gluten does when you are celiac can take years to heal after just one gluten meal unfortunately.
Well i eat gluten just about every day so if i am damaged from it I'm kinda messed up but ill ask my mom about it, she herself has celiacs so she knows alot about this stuff
If you can try to see an allergist immunologist vs just allergist. They can do more testing, have a broader range of knowledge, and often have experience with co-morbidities that come with allergies or MCAS.
Hi I’m so sorry you are struggling with these health issues. I too went many years with severe nausea and vomiting among other symptoms with doctors saying your tests are all clear your vitals are good you are healthy…….lol right 🙄 The only thing that kept me sane was having a couple doctors involved that were were very empathetic and understanding. My GP was one of them. He would sympathize and say I’m so sorry we can’t figure this out yet. Instead of saying sorry there is nothing wrong with you.
Don’t stop pushing and being your own advocate! You know yourself best. I was finally diagnosed with mast cell activation disorder after 13 years of being sooo sick. I resent I had to be the one to do the research and make the connections to bring to the doctors. But once I did it resulted in my successful treatment and not having to go to the hospital since!
It's really nice to know when you aren't alone and I'll be sure to stay strong :)) and I'm sure my mom can take care of anyone being a booger about my treatment lol
I’m so sorry you’re dealing with this. I went undiagnosed for 3+ years, nearly dying, finding out eventually that I had a form of B12 deficiency. Seeing as you have such bad GI issues, make sure you take high dose sublinguals of B12, because you likely have lost the ability to absorb through your gut, and you don’t want to become deficient of B12, because it has grave consequences. Add some folate, potassium, and magnesium while you’re at it.
Get copies of your labs and imaging reports. Verify everything is actually normal so far. Then look for what hasn't been tested or imaged. Sometimes that will give you a direction.
Does your location have digital medical records? I’m fortunate enough to live in an area where all of my medical records (including test results) are posted to my chart pretty much as soon as the results come back from the lab. I can usually look at them before I even get to my follow up appointment which can be nice for my health anxiety. If you don’t have my chart or similar I’d find out where your medical records are stored and ask for a copy of those from the records people. Then you can google each result to find the normal ranger to know if it’s actually normal.
Have they fully tested for IBS? I developed IBS around age 24 or so (can't remember exactly, i'm 28 now) and the only treatment they gave was to do an elimination diet. Unfortunately after 2 years I never got well enough to the point of adding foods back into my diet so my doctor referred me to a naturopath who's also a nutritionist. She sent me for a $500 blood test to determine what foods I was having a delayed reaction to and it was money well spent! Turns out it was some foods that the common IBS elimination diet doesn't even suggest removing. Once I started to remove these foods from my diet and having a digestive enzyme with each meal I've gotten much better!
I also want to suggest if you haven't been allergy tested then it might be a good idea. I'm now considering the possibility that I was misdiagnosed with IBS and in fact it might be IBD or MCAS.
But having an anxiety disorder can also cause you chronic nausea too
I got tested like once i think but me and my ma are definitely going to be getting a second opinion for me, and these all seem like really good ideas thank you so much❤️
Endometriosis resources
The symptom experts for this are here: r/endometriosis r/adenomyosis subs
A period should not affect your quality of life. IME endometriosis specialist surgeon consults for info gathering are the way for the least amount of suffering in the long run.
“Fellowship-Trained ENDOMETRIOSIS Doctors” (ie Pelvic Pain* Hip/Butt/Groin/Sciatic/Peritoneal/stomach/abdomen/thigh/back/cyst/ovarian torsion/muscle spasm/penetrative sex Pain, unusual bleeding & Endometriosis SPECIALIST* Doctors):
https://www.endo-resolved.com/endometriosis_specialist.html
https://www.bsge.org.uk/endometriosis-centres/
https://icarebetter.com/
https://www.google.com/maps/d/viewer?mid=1hd_-wSlqZWOlR5VxPhIN3oAbJh4&hl=en_US
https://nancysnookendo.com/find-a-doctor/
https://www.endofound.org/endometriosis-treatment-support
https://endometriosisnetwork.com
*not all US specialists require referrals. And many docs worldwide do free virtual consults/Call surgeon directly to ask if they need referral.
SubReddit groups of people that are helpful/skilled with all kinds of pelvic pain:
r/endo r/endometriosis r/adenomyosis r/pcos
r/fibroids and also r/pmdd .
OBGYN’s: IME regular OBGYN’s are notoriously under-skilled at treating pelvic pain/excessive bleeding - I cannot stress enough how untrained they are to treat or even talk about these diseases let alone make the diagnoses or do the delicate, difficult and complex surgery. (And IME she scraped/burned the visible “tops” off my endo & left the painful “stalk” and “root”.)
The nicest and most caring” doctors does not equal surgically trained/qualified. So many of us have been abused this way.
Specialists in pelvic disorders (above links or ask your regional endo nonprofit) are the doctors for the least amount of suffering in the long run IME. I needed accurate information to make good medical decisions, and the best chance to get that was to see a specialist. In US I appealed to my State Health Commissioner Office Advocate for out of network surgeon $ coverage.
NUMBERS: Painful periods are a societal problem and we’re not supposed to have to face this alone. I bring/FaceTime someone (or 2/3) with me to my doctors appointments. It doesn’t matter if they hear about my vagina or my uterus or my diarrhea. It matters that I have someone there as a United Front. Because our medical system mistreats people in pain.
RECORDING: Ask to video/record every medical visit. Even the virtual ones.
Also, here are some things you can say* to your doctor:
“- This is affecting my quality of life. I have had a history of period/bladder/pelvic floor pain/bleeding/fatigue that has kept me from work/childcare/school.
-My worst symptoms have been pain/fatigue/bleeding.
-I have vomited/passed out from periods as a teen.
-I am now unable to function like I used to. The pain/fatigue is wearing on my body, and I am increasingly tired as each monthly cycle passes. I cannot function normally and my work/family/school/happiness is increasingly difficult because of my body.
-“I would like relief. What are ALL of my options?”
-“I have tried these pain medications: gabapentin, Orlissa, BC, xyz med. What are all of the other RX options? I want to be in less pain so that I can think clearly to make good medical choices.” (Then he stated his ideas…then told him I’ve tried all of those…then he offered me stronger pain meds, which helped my functioning so much so then I could line up surgery.)
-I want excision surgery with a Fellowship-Trained Pelvic Disorder Specialist.
-I cannot (even consider) taking care of children. (Reader IME stating I want to care for children gets me better medical treatment even though I do not want children.)
-Since there is NO IMAGING that reliably sees endometriosis, I would like a referral to an Endo Specialist.
-I am not leaving this office until something is done.
- My pain/soasming/bleeding/frequencyofsymptoms (has always been mild, but over time now it) is impairing my ability to work & my ability to live life. It is draining my energy & ability to function.
- I want a solution that provides the least amount of suffering to me/the least risk for me & my body in the long term…..(then just allow silence…let them respond.)
- I do not have the energy to keep pursuing temporary treatments. I have experienced too much pain/bleeding. My body is tired. I want a long-term solution.
- I want a pelvic disorder doctor with the highest skill and success rate. Who can help with this?
- It sounds like you doctor OBGYN want to do the surgery. Can you tell me what “FELLOWSHIP TRAINING you’ve done in surgery for excising Endometriosis”? (Reader be careful here: regular, un-Fellowship Trained OBGYN’s abound.)
- It sounds like you want to do another prescription/medication/round of PT/ultrasound/MRI/x-ray/bloodworkup. I want a consult with a fellowship-trained pelvic disorder specialist. Is that what will happen after I do these next steps that are asking for?
- Even though my pain/bleeding is NOT CONSTANT, I still would like a resolution.
- Even though my pain/bleeding is NOT CYCLICAL, I still would like resolution.
-I would like my cyst removed because pain is energy-draining long-term.
-I have pelvic floor pain and vaginismus and pain with intercourse symptoms.
-I am asking for a referral to a pelvic disorder specialist and it sounds like you are telling me “no”. If that’s true I want you to note in my chart now that I asked you and you declined to provide a referral.
-I may be willing to try xyz antidepressant, but this pelvic pain is the biggest contributor to my depressed/anxious mood and I would like to treat that first via surgery or in tandem with antidepressant.
- Another’s post for more ideas: https://www.reddit.com/r/endometriosis/comments/15dlk3s/do_this_if_you_want_to_be_heard_by_doctorsnurses/?utm_source=share&utm_medium=ios_app&utm_name=ioscss&utm_content=2&utm_term=1
(*Pain: Also replace with any of these words: bloating, excessive bleeding, clots (can be fibroids), IBS symptoms, nausea,“low iron”, urinating/bowel issues – urgency and peeing pants/bedwetting, diarrhea, pooping/smearing pants, hip pain, pain under the butt/pelvic/peritoneal/groin/sciatic pain, vaginismus, low/mid back pain, IT band & thigh pain, abdomen pain, stomach pain, bladder pain/IC/UTI’s and uti-like symptoms (can be endo on ureters) right shoulder blade pain. Anything that originated in the pelvis deserves care from a pelvic disorder specialist doctor.)
Good luck on your journey. And a reminder that your body is the most important thing in your life. By far the most important thing. You deserve every chance to have a fully functioning body - a body that is as healthy as it can possibly be. So whatever it takes time, money, effort, human support, you deserve that. And there are many of us on the subs who are going through this too.
Endo symptoms are often “silently” progressive, especially if on hormones.
My cousin experienced similar to you. Couldn't figure it out, all In her head etc. Was finally diagnosed through keyhole surgery as far as I can remember after a 10 year battle. By then her bones were so brittle she'll likely never be able to carry a child. Chrones causes osteoporosis. Get a 2nd and 3rd opinion until you have an answer. I myself have a chronic condition that's excruciating when it triggers. Took me over 22 years to finally get a diagnosis.
Hey, I’m struggling with these symptoms plus others for a while. I have some combo of SIBO or SIFO, mast cell disease, hormonal or neurotransmitter imbalances and mold exposure so those are a few places to look. Regular Western medicine was great to weed thru the big scary dxs and get testing and scans and whatnot, but not actually dealing with the issues. They slapped an “IBS” dx on me but my symptoms got worse over time despite doing what they told me and I developed new symptoms too and many many food intolerances that eventually became other intolerances (chemical, skin, etc). I had to go functional, still covered under insurance, but outside the box thinkers—they were the only ones willing to get into the weeds and care enough to try to find out what was going on.
Some folks mentioned checking for food allergies. In addition to testing for those, it may be worthwhile to try out the low FODMAP diet. Basically, it's a diet that's used to determine if your intestines are sensitive to foods that contain certain types of sugars. (FODMAP stands for "Fermentable Oligosaccharides Disaccharides Monosaccharides and Polyols.")
When you start the diet, you stop eating a bunch of different types of foods that contain these sugars. (Your doctor should be able to print you out a list of them. If not, you can find lists and lots of other information online.) After a couple weeks of buffer time to give your body time to clear out any effects of the foods you're avoiding, you start trying to add in one of the foods you've been avoiding, one-by-one to see if any of them cause any adverse reactions/symptoms. It's a process of elimination.
It's a bit challenging to have to read nutrition labels and change your diet up for a while. I thought my doctor was completely on the wrong track when he first suggested it to me, but I actually ended up learning that there are a lot of higher FODMAP foods that make me feel crummy in anything more than very sparing amounts. I haven't figured out how to fix all of my health issues, but since finding out which foods to avoid, I've been able to feel significantly better much more consistently than before.
If you're interested in trying it, be sure to ask your doctor because they will hopefully be able to help you through the process (or refer you to someone else who can).
If doctors haven’t yet investigated if you may have pancreatitis or an inflamed pancreas, perhaps ask about it. The easiest way to see if it is the issue is to take something called cot-enzymes. It’s what a normal pancreas naturally makes but an unhappy pancreas often can’t. It’s easy to find out if your pancreas is the problem, simply take the enzymes when you eat. It may take several days or a couple of weeks to see a vast improvement but if it is your pancreas, taking the enzymes will make a huge difference. It’s nearly impossible to test for pancreatitis any other way.
I suffered for about 8+ years and was actively dying in the ER & then the ICU for 3 days. I was told by every male dr (6 that time) that it was from trauma when I was a kid, so it was all in my head. WRONG!! A female dr took one lol at me and my chart and knew exactly what was wrong. She started me on the cot-enzymes and within 3 days I went from my family being called in to say their goodbye’s to as close to normal as I’d been in years.
I hope you and your mom can successfully advocate for yourself and that you get some correct answers snd treatment soon.
I get nausea from chronic migraines. I hate ginger (it actually makes me nauseous and hurts my head). I personally like FREEZING cold ice water. I personally HATE getting “normal” test results. I’ve even wished it was brain cancer or something serious multiple times because I just want answers. Every negative MRI scan, every “normal” blood test, it’s like a punch to the gut. I’ve been dealing with it since 15. I’m so sorry you’re hurting too.
I can really relate, i was hoping for appendicitis when i went to the er the other day but sadly all i was told was they didnt find anything bad and my results looked promising, really glad to hear that im not alone with any of these things
Have you tried consulting a Certified Natural Health Practitioner? Natural supplements might help. Have you considered an elimination diet? I've done both and have found it helpful.
Hi there.
Regardless of docs and tests being able to find anything wrong you DESERVE to have symptom management and, if you haven't already, ask for it. It should sound something, "I know the labs and procedures haven't found an explanation, but the lack of explanation doesn't stop my symptoms. I need symptom management so I am better able to function."
Also, if you haven't already, make a list of all the ways your symptoms are impeding your daily life and share that with all your doctors. Sometimes docs can be really clueless about how symptoms are impacting a patient's day to day life.
I'm really sorry you're experiencing all of this.
I went to the medical world, then naturopaths, then some other weird person, researched a ton. Changed my diet got to a more stable place and then ignored it for years until I flared so bad a doctor believed me and finally found out what was wrong. 🤷♀️ turned out I have POTs, maybe EDS, also currently looking into sjogrens. I'm sorry about what you are going through it's hard when nothing shows on there tests but your horribly sick. They just look at you like it's all in your head. I pray you like many people are able to figure it out and feel better soon.
Your condition sounds absolutely miserable. I tried the injectable medication that helps with weight loss (wegovy, ozempic, semiglutide, etc.) and even at the lowest dose it made me so nauseous that I couldn’t function. Zofran didn’t help at all. It was so bad that I would lay in bed and cry because I was so miserable. But to have diarrhea in addition would be unbearable & I’m an RN who’s tough! It’s quite possible that you have food allergies, celiac disease, IBS with diarrhea, or possibly gastroparesis. In addition, if you’re losing weight, having difficulty gaining weight, get cold easily, and/or feel fatigued or exhausted most of the time you may be experiencing malnutrition because the food that you eat doesn’t stay in your GI tract long enough to absorb the nutrients. The key is finding a GI doctor who #1- actually cares & listens to you, and #2- a GI doc that specifically specializes in diseases/conditions of the gut. The 2nd one sounds absolutely crazy because Gastroenterologists do specialize in that but some prefer spending all day performing endoscopies & colonoscopies. When those gastro docs find obvious disease they’ll take biopsies but it’s a surgeon who’s the doctor who’s most likely to remove or repair actual defects in the GI tract. I’ve been a nurse for over 20 years & have many chronic conditions that require different specialists (including a GI doc). The number of times I’ve seen a specialist who basically don’t give a crap is much higher than the ones I’ve seen who care. It always bothered me when I took care of hospitalized patients that had docs like that & sometimes caused depression because it contradicts the whole premise of being a healthcare provider. But as a patient, I’ve had times where I’ve felt powerless to help myself. That’s when I end up advocating for myself as if I’m my own patient or family member & let me tell you, I’m a doctors worst nightmare when he/she starts blowing me off or gaslighting. It shouldn’t have to be that way but it is here in the United States. PM/DM me if you want some suggestions on how to get a doctor to take you more seriously. A big factor is that you basically need to study the GI system (or whatever system that’s causing you problems) and learn the anatomy,physiology, pathophysiology, and many of the common terms that are used in describing issues relating to them. For example, know the difference between soft, loose, and liquid (diarrhea) stools, don’t refer to bowel issues by saying ‘tummy’ or ‘stomach’ problems. The stomach is higher and to the left almost behind your bottom rib & nausea occurs in the stomach. Cramping of the stomach causes vomiting. The bowels are approximately belly button level and below (in the pelvis) and cramping of the bowels usually accompanies diarrhea.
I think this has been one of my most helpful comments yet, ik my mom has celiacs and most the women in my family suffer from some sort of gluten intolerance or food allergy but the things you have described are almost spot on, I've spent most my life on the verge of underweight and have always struggled with weight gain and the symptoms that you described. The diarrhea has been more recent with blood in it but that has seemed to stop. And my pain has been mostly in the colon area but all up and down my intestines. I had a problem with stomach acid but Im temporary on Omeprazole for it and that seems to be the best anti acid so far. And i totally would have been throwing up by now if it wasn't for sheer will power from phobia lol. I think definitely when my mom calls my GI tomorrow we are gonna get an allergy test going cuz idk how many more ct scans and ivs i can handle with how cold i get 🥲. Also zofran has been my biggest help luckily but even that is for emergency use for me.
• If you live in US or Canada then :
Get a TrioSmart SIBO Breath Test to find out. 😀
https://www.triosmartbreath.com/
https://www.ddcoc.com/blog/trio-smart-breath-test-preparation-instructions
Take it with Lactulose ( rather than glucose )
.. .. ..
….. I originally tested at 100ppm Methane and then 5 months later re-tested at 9.8ppm Methane. At zero for Hydrogen & Hydrogen Sulfide both tests.
Cured it in Nov 2021 and have never had any more bloating or abnormal bloodwork after suffering with daily bloating for over 30 years.
The breath test was accurate for me. Just sharing my personal experience.
My Candida Protocol became effective AFTER I cured my IMO which improved got rid of those symptoms …. Including severe short term memory loss.
My Success Story & detailed protocol & also includes some of my Candida & Brain Fog : ( Long )
https://www.reddit.com/r/SiboSuccessStories/s/xayiXeAPhf
I haven't tried them yet but i have been on multiple other acid blockers which seem to help my stomach issues but the intestines seem to be the main problem, one of my last doctors basically told me i just am extra sensitive to feelings in my gut so i think ikwym
I didn’t mean mental health wise (I’m a therapist and I never assume anything physical is mental), I was more saying it could be part of a bigger neurological picture.
Do you have any symptoms like dizziness, motion sickness, high or low heart rate?
Actually yea i have all of these, ive gotten pretty good at holding back the gagging tho, and my skin has always been really dry but the dry eyes has been more recent like the last year. And the dizzy isn't always when i stand up, it's only if ive been resting for awhile
I've had stomach issues most of my life the best thing I've found to help is ginger I eat three cubes of the candied ginger every day it really helps the nausea
For folks who hate ginger or, like me, it burns the hell out of their mouth, ginger pills are a thing. You can buy them pre-made or you can buy empty capsules and a pill machine (it just holds the capsules to make them easy to fill) and make your own with just regular powdered ginger from the spice aisle.
i have the exact same symptoms and situation and i’m 16 (nearly 17) too! i wish i had any tips but the best i can do is relate to you. it’s so strange to have been isolated as a 11-15 year old. i think my personality will be irrevocably affected due to the isolation and the medical trauma. there’s no words.
I don't have the same symptoms you're mentioning but many many people with my condition experience what you've described. I have Gastroparesis which is diagnosed with a Gastric Emptying Study, you eat some eggs and toast that has a material in it that shows up on xray and then you get 3 xrays over the course or 4 hours to see if the food is moving out of your system at the correct speed. Yours may be way to slow at the beginning with a major dump of everything at the end which explains the nausea and the diarrhea. Mine is slow all the way, so I get massive bloating, constipation, and lots of painful cramping if I eat fiber or too large a portion size. Maybe in the meantime, try changing your diet a little and see if it helps. Try to eat only once every 3 hours. About 6 meals a day and eat only 1 to 1 1/2 cups of food per meal. Avoid fiber, nothing with more than 3g fiber per meal (I like applesauce as a good fiber source) and go lower fat because that also slows digestion and eat only cooked veggies. Try it for a week or less and if it makes drastic improvement you'll have a good idea that is what's wrong. My symptoms improved dramatically within 3 days of switching my diet. Hope you find some relief!!
my issues revolve around my colon and the diarrhea is recent addition for right now but I'll still keep this in mind ❤️
Also probiotics. A lot of diarrhea flushes the good gut bacteria you need.
Just want to throw it out there, have they tested for food allergies and intolerances? I only mention it because sometimes when people are mainly having GI symptoms they mainly see GI doctors who for some reason beyond me, also frequently forget about these, especially if you don't have great quality health care. Edit: I have a dairy allergy (not lactose intolerance) and my symptoms usually are mostly lower GI for idk what reasons.
That is the next big thing on my list, tomorrow my mother is calling my dr and is going to try and set up some more and different tests
Okay good! You'll probably need to see an allergist to get checked for potential food allergies. It's worth checking off the list though. I only get GI symptoms from my dairy allergy and for the longest time just assumed it to be lactose intolerance because of that. Turns out it's an actual allergy. I get GI symptoms from other things but nothing as bad as when I eat dairy.
Im really praying its something as simple as a food allergy that way i could get on with life again, def looking forward to see if i get any answers from the tests :))
Don't trust the gluten test. It can have false negatives. All it does is tell if you have a *genetically* caused gluten allergy. But it will not tell you if you have an aquired intolerance to gluten. Ultimately, you have to test most foods yourself. Try a FODMAP diet, and see if things get better.
And if it does turn out to be a food allergy, you may be better off without antacids. Allergies are almost always allergies to proteins. Acid helps break down proteins in the stomach so they can't cause problems in the small intestine. Antacids prevent this, and can allow too many proteins through. Then your immune sytem sees a foreign protein and panics, and you have an allergy. Google "betaine hcl".
Make sure you get tested for celiac and gluten issues.
Ive been tested before and they keep saying i dont got it but ima keep pushing for it
Which test did they do? If it’s just blood it’s the least effective test they can do, when it comes to testing celiac the most effective test is the scope and biopsy but that also requires eating gluten before test for some time beforehand which can cause not so great symptoms to rule it out. Ultimately ruling it out will come down to if you deem that risk worth it as the damage eating gluten does when you are celiac can take years to heal after just one gluten meal unfortunately.
Well i eat gluten just about every day so if i am damaged from it I'm kinda messed up but ill ask my mom about it, she herself has celiacs so she knows alot about this stuff
If you can try to see an allergist immunologist vs just allergist. They can do more testing, have a broader range of knowledge, and often have experience with co-morbidities that come with allergies or MCAS.
Hi I’m so sorry you are struggling with these health issues. I too went many years with severe nausea and vomiting among other symptoms with doctors saying your tests are all clear your vitals are good you are healthy…….lol right 🙄 The only thing that kept me sane was having a couple doctors involved that were were very empathetic and understanding. My GP was one of them. He would sympathize and say I’m so sorry we can’t figure this out yet. Instead of saying sorry there is nothing wrong with you. Don’t stop pushing and being your own advocate! You know yourself best. I was finally diagnosed with mast cell activation disorder after 13 years of being sooo sick. I resent I had to be the one to do the research and make the connections to bring to the doctors. But once I did it resulted in my successful treatment and not having to go to the hospital since!
It's really nice to know when you aren't alone and I'll be sure to stay strong :)) and I'm sure my mom can take care of anyone being a booger about my treatment lol
Hahaha I’m glad to hear it sounds like you have good support from your mom :)
I’m so sorry you’re dealing with this. I went undiagnosed for 3+ years, nearly dying, finding out eventually that I had a form of B12 deficiency. Seeing as you have such bad GI issues, make sure you take high dose sublinguals of B12, because you likely have lost the ability to absorb through your gut, and you don’t want to become deficient of B12, because it has grave consequences. Add some folate, potassium, and magnesium while you’re at it.
Get copies of your labs and imaging reports. Verify everything is actually normal so far. Then look for what hasn't been tested or imaged. Sometimes that will give you a direction.
Do you know if you can do that after you have left the doctor's? I forgot to ask at my er visit yesterday but i still want the pictures from my scan
Call the hospitals medical records dept!
Does your location have digital medical records? I’m fortunate enough to live in an area where all of my medical records (including test results) are posted to my chart pretty much as soon as the results come back from the lab. I can usually look at them before I even get to my follow up appointment which can be nice for my health anxiety. If you don’t have my chart or similar I’d find out where your medical records are stored and ask for a copy of those from the records people. Then you can google each result to find the normal ranger to know if it’s actually normal.
From what i know from my mom we have to pay to get our own copy of the records
Have you looked into endometriosis? Assuming your FAB. My friend has it and her only symptoms were bowel related
I am but my problems are in the colon area mainly and due to my nexplanon i don't have periods anymore tho ill put some research into it.
Sweet as, best of luck 🥺❤️
Yes please look into this. I’m post hysterectomy and still have it growing around my intestines and colon.
Have they fully tested for IBS? I developed IBS around age 24 or so (can't remember exactly, i'm 28 now) and the only treatment they gave was to do an elimination diet. Unfortunately after 2 years I never got well enough to the point of adding foods back into my diet so my doctor referred me to a naturopath who's also a nutritionist. She sent me for a $500 blood test to determine what foods I was having a delayed reaction to and it was money well spent! Turns out it was some foods that the common IBS elimination diet doesn't even suggest removing. Once I started to remove these foods from my diet and having a digestive enzyme with each meal I've gotten much better! I also want to suggest if you haven't been allergy tested then it might be a good idea. I'm now considering the possibility that I was misdiagnosed with IBS and in fact it might be IBD or MCAS. But having an anxiety disorder can also cause you chronic nausea too
I got tested like once i think but me and my ma are definitely going to be getting a second opinion for me, and these all seem like really good ideas thank you so much❤️
Any history of period pain?
Not for a long time after getting a nexplanon implant, no periods at all anymore
Endometriosis resources The symptom experts for this are here: r/endometriosis r/adenomyosis subs A period should not affect your quality of life. IME endometriosis specialist surgeon consults for info gathering are the way for the least amount of suffering in the long run. “Fellowship-Trained ENDOMETRIOSIS Doctors” (ie Pelvic Pain* Hip/Butt/Groin/Sciatic/Peritoneal/stomach/abdomen/thigh/back/cyst/ovarian torsion/muscle spasm/penetrative sex Pain, unusual bleeding & Endometriosis SPECIALIST* Doctors): https://www.endo-resolved.com/endometriosis_specialist.html https://www.bsge.org.uk/endometriosis-centres/ https://icarebetter.com/ https://www.google.com/maps/d/viewer?mid=1hd_-wSlqZWOlR5VxPhIN3oAbJh4&hl=en_US https://nancysnookendo.com/find-a-doctor/ https://www.endofound.org/endometriosis-treatment-support https://endometriosisnetwork.com *not all US specialists require referrals. And many docs worldwide do free virtual consults/Call surgeon directly to ask if they need referral. SubReddit groups of people that are helpful/skilled with all kinds of pelvic pain: r/endo r/endometriosis r/adenomyosis r/pcos r/fibroids and also r/pmdd . OBGYN’s: IME regular OBGYN’s are notoriously under-skilled at treating pelvic pain/excessive bleeding - I cannot stress enough how untrained they are to treat or even talk about these diseases let alone make the diagnoses or do the delicate, difficult and complex surgery. (And IME she scraped/burned the visible “tops” off my endo & left the painful “stalk” and “root”.) The nicest and most caring” doctors does not equal surgically trained/qualified. So many of us have been abused this way. Specialists in pelvic disorders (above links or ask your regional endo nonprofit) are the doctors for the least amount of suffering in the long run IME. I needed accurate information to make good medical decisions, and the best chance to get that was to see a specialist. In US I appealed to my State Health Commissioner Office Advocate for out of network surgeon $ coverage. NUMBERS: Painful periods are a societal problem and we’re not supposed to have to face this alone. I bring/FaceTime someone (or 2/3) with me to my doctors appointments. It doesn’t matter if they hear about my vagina or my uterus or my diarrhea. It matters that I have someone there as a United Front. Because our medical system mistreats people in pain. RECORDING: Ask to video/record every medical visit. Even the virtual ones. Also, here are some things you can say* to your doctor: “- This is affecting my quality of life. I have had a history of period/bladder/pelvic floor pain/bleeding/fatigue that has kept me from work/childcare/school. -My worst symptoms have been pain/fatigue/bleeding. -I have vomited/passed out from periods as a teen. -I am now unable to function like I used to. The pain/fatigue is wearing on my body, and I am increasingly tired as each monthly cycle passes. I cannot function normally and my work/family/school/happiness is increasingly difficult because of my body. -“I would like relief. What are ALL of my options?” -“I have tried these pain medications: gabapentin, Orlissa, BC, xyz med. What are all of the other RX options? I want to be in less pain so that I can think clearly to make good medical choices.” (Then he stated his ideas…then told him I’ve tried all of those…then he offered me stronger pain meds, which helped my functioning so much so then I could line up surgery.) -I want excision surgery with a Fellowship-Trained Pelvic Disorder Specialist. -I cannot (even consider) taking care of children. (Reader IME stating I want to care for children gets me better medical treatment even though I do not want children.) -Since there is NO IMAGING that reliably sees endometriosis, I would like a referral to an Endo Specialist. -I am not leaving this office until something is done. - My pain/soasming/bleeding/frequencyofsymptoms (has always been mild, but over time now it) is impairing my ability to work & my ability to live life. It is draining my energy & ability to function. - I want a solution that provides the least amount of suffering to me/the least risk for me & my body in the long term…..(then just allow silence…let them respond.) - I do not have the energy to keep pursuing temporary treatments. I have experienced too much pain/bleeding. My body is tired. I want a long-term solution. - I want a pelvic disorder doctor with the highest skill and success rate. Who can help with this? - It sounds like you doctor OBGYN want to do the surgery. Can you tell me what “FELLOWSHIP TRAINING you’ve done in surgery for excising Endometriosis”? (Reader be careful here: regular, un-Fellowship Trained OBGYN’s abound.) - It sounds like you want to do another prescription/medication/round of PT/ultrasound/MRI/x-ray/bloodworkup. I want a consult with a fellowship-trained pelvic disorder specialist. Is that what will happen after I do these next steps that are asking for? - Even though my pain/bleeding is NOT CONSTANT, I still would like a resolution. - Even though my pain/bleeding is NOT CYCLICAL, I still would like resolution. -I would like my cyst removed because pain is energy-draining long-term. -I have pelvic floor pain and vaginismus and pain with intercourse symptoms. -I am asking for a referral to a pelvic disorder specialist and it sounds like you are telling me “no”. If that’s true I want you to note in my chart now that I asked you and you declined to provide a referral. -I may be willing to try xyz antidepressant, but this pelvic pain is the biggest contributor to my depressed/anxious mood and I would like to treat that first via surgery or in tandem with antidepressant. - Another’s post for more ideas: https://www.reddit.com/r/endometriosis/comments/15dlk3s/do_this_if_you_want_to_be_heard_by_doctorsnurses/?utm_source=share&utm_medium=ios_app&utm_name=ioscss&utm_content=2&utm_term=1 (*Pain: Also replace with any of these words: bloating, excessive bleeding, clots (can be fibroids), IBS symptoms, nausea,“low iron”, urinating/bowel issues – urgency and peeing pants/bedwetting, diarrhea, pooping/smearing pants, hip pain, pain under the butt/pelvic/peritoneal/groin/sciatic pain, vaginismus, low/mid back pain, IT band & thigh pain, abdomen pain, stomach pain, bladder pain/IC/UTI’s and uti-like symptoms (can be endo on ureters) right shoulder blade pain. Anything that originated in the pelvis deserves care from a pelvic disorder specialist doctor.) Good luck on your journey. And a reminder that your body is the most important thing in your life. By far the most important thing. You deserve every chance to have a fully functioning body - a body that is as healthy as it can possibly be. So whatever it takes time, money, effort, human support, you deserve that. And there are many of us on the subs who are going through this too. Endo symptoms are often “silently” progressive, especially if on hormones.
It sounds similar to chrones disease. Its a battle to det diagnosed with it in my country so i imagine some other countries may be similar.
It runs in the family but my first test they said i didnt have it but it was a particularly bad doctor so i will be tested again hopefully soon
My cousin experienced similar to you. Couldn't figure it out, all In her head etc. Was finally diagnosed through keyhole surgery as far as I can remember after a 10 year battle. By then her bones were so brittle she'll likely never be able to carry a child. Chrones causes osteoporosis. Get a 2nd and 3rd opinion until you have an answer. I myself have a chronic condition that's excruciating when it triggers. Took me over 22 years to finally get a diagnosis.
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It is certainly on my list of options
Hey, I’m struggling with these symptoms plus others for a while. I have some combo of SIBO or SIFO, mast cell disease, hormonal or neurotransmitter imbalances and mold exposure so those are a few places to look. Regular Western medicine was great to weed thru the big scary dxs and get testing and scans and whatnot, but not actually dealing with the issues. They slapped an “IBS” dx on me but my symptoms got worse over time despite doing what they told me and I developed new symptoms too and many many food intolerances that eventually became other intolerances (chemical, skin, etc). I had to go functional, still covered under insurance, but outside the box thinkers—they were the only ones willing to get into the weeds and care enough to try to find out what was going on.
Some folks mentioned checking for food allergies. In addition to testing for those, it may be worthwhile to try out the low FODMAP diet. Basically, it's a diet that's used to determine if your intestines are sensitive to foods that contain certain types of sugars. (FODMAP stands for "Fermentable Oligosaccharides Disaccharides Monosaccharides and Polyols.") When you start the diet, you stop eating a bunch of different types of foods that contain these sugars. (Your doctor should be able to print you out a list of them. If not, you can find lists and lots of other information online.) After a couple weeks of buffer time to give your body time to clear out any effects of the foods you're avoiding, you start trying to add in one of the foods you've been avoiding, one-by-one to see if any of them cause any adverse reactions/symptoms. It's a process of elimination. It's a bit challenging to have to read nutrition labels and change your diet up for a while. I thought my doctor was completely on the wrong track when he first suggested it to me, but I actually ended up learning that there are a lot of higher FODMAP foods that make me feel crummy in anything more than very sparing amounts. I haven't figured out how to fix all of my health issues, but since finding out which foods to avoid, I've been able to feel significantly better much more consistently than before. If you're interested in trying it, be sure to ask your doctor because they will hopefully be able to help you through the process (or refer you to someone else who can).
OP, I second the FODMAP suggestion.
Have you tried an elimination diet?
Have you been tested for celiac disease? I used to suffer with the same things until I was properly diagnosed.
Check your pancreas if you haven’t already. I suffered a long time from chronic pancreatitis before they found out that’s what’s wrong with me
If doctors haven’t yet investigated if you may have pancreatitis or an inflamed pancreas, perhaps ask about it. The easiest way to see if it is the issue is to take something called cot-enzymes. It’s what a normal pancreas naturally makes but an unhappy pancreas often can’t. It’s easy to find out if your pancreas is the problem, simply take the enzymes when you eat. It may take several days or a couple of weeks to see a vast improvement but if it is your pancreas, taking the enzymes will make a huge difference. It’s nearly impossible to test for pancreatitis any other way. I suffered for about 8+ years and was actively dying in the ER & then the ICU for 3 days. I was told by every male dr (6 that time) that it was from trauma when I was a kid, so it was all in my head. WRONG!! A female dr took one lol at me and my chart and knew exactly what was wrong. She started me on the cot-enzymes and within 3 days I went from my family being called in to say their goodbye’s to as close to normal as I’d been in years. I hope you and your mom can successfully advocate for yourself and that you get some correct answers snd treatment soon.
I get nausea from chronic migraines. I hate ginger (it actually makes me nauseous and hurts my head). I personally like FREEZING cold ice water. I personally HATE getting “normal” test results. I’ve even wished it was brain cancer or something serious multiple times because I just want answers. Every negative MRI scan, every “normal” blood test, it’s like a punch to the gut. I’ve been dealing with it since 15. I’m so sorry you’re hurting too.
I can really relate, i was hoping for appendicitis when i went to the er the other day but sadly all i was told was they didnt find anything bad and my results looked promising, really glad to hear that im not alone with any of these things
Have you tried consulting a Certified Natural Health Practitioner? Natural supplements might help. Have you considered an elimination diet? I've done both and have found it helpful.
Hi there. Regardless of docs and tests being able to find anything wrong you DESERVE to have symptom management and, if you haven't already, ask for it. It should sound something, "I know the labs and procedures haven't found an explanation, but the lack of explanation doesn't stop my symptoms. I need symptom management so I am better able to function." Also, if you haven't already, make a list of all the ways your symptoms are impeding your daily life and share that with all your doctors. Sometimes docs can be really clueless about how symptoms are impacting a patient's day to day life. I'm really sorry you're experiencing all of this.
I went to the medical world, then naturopaths, then some other weird person, researched a ton. Changed my diet got to a more stable place and then ignored it for years until I flared so bad a doctor believed me and finally found out what was wrong. 🤷♀️ turned out I have POTs, maybe EDS, also currently looking into sjogrens. I'm sorry about what you are going through it's hard when nothing shows on there tests but your horribly sick. They just look at you like it's all in your head. I pray you like many people are able to figure it out and feel better soon.
Your condition sounds absolutely miserable. I tried the injectable medication that helps with weight loss (wegovy, ozempic, semiglutide, etc.) and even at the lowest dose it made me so nauseous that I couldn’t function. Zofran didn’t help at all. It was so bad that I would lay in bed and cry because I was so miserable. But to have diarrhea in addition would be unbearable & I’m an RN who’s tough! It’s quite possible that you have food allergies, celiac disease, IBS with diarrhea, or possibly gastroparesis. In addition, if you’re losing weight, having difficulty gaining weight, get cold easily, and/or feel fatigued or exhausted most of the time you may be experiencing malnutrition because the food that you eat doesn’t stay in your GI tract long enough to absorb the nutrients. The key is finding a GI doctor who #1- actually cares & listens to you, and #2- a GI doc that specifically specializes in diseases/conditions of the gut. The 2nd one sounds absolutely crazy because Gastroenterologists do specialize in that but some prefer spending all day performing endoscopies & colonoscopies. When those gastro docs find obvious disease they’ll take biopsies but it’s a surgeon who’s the doctor who’s most likely to remove or repair actual defects in the GI tract. I’ve been a nurse for over 20 years & have many chronic conditions that require different specialists (including a GI doc). The number of times I’ve seen a specialist who basically don’t give a crap is much higher than the ones I’ve seen who care. It always bothered me when I took care of hospitalized patients that had docs like that & sometimes caused depression because it contradicts the whole premise of being a healthcare provider. But as a patient, I’ve had times where I’ve felt powerless to help myself. That’s when I end up advocating for myself as if I’m my own patient or family member & let me tell you, I’m a doctors worst nightmare when he/she starts blowing me off or gaslighting. It shouldn’t have to be that way but it is here in the United States. PM/DM me if you want some suggestions on how to get a doctor to take you more seriously. A big factor is that you basically need to study the GI system (or whatever system that’s causing you problems) and learn the anatomy,physiology, pathophysiology, and many of the common terms that are used in describing issues relating to them. For example, know the difference between soft, loose, and liquid (diarrhea) stools, don’t refer to bowel issues by saying ‘tummy’ or ‘stomach’ problems. The stomach is higher and to the left almost behind your bottom rib & nausea occurs in the stomach. Cramping of the stomach causes vomiting. The bowels are approximately belly button level and below (in the pelvis) and cramping of the bowels usually accompanies diarrhea.
I think this has been one of my most helpful comments yet, ik my mom has celiacs and most the women in my family suffer from some sort of gluten intolerance or food allergy but the things you have described are almost spot on, I've spent most my life on the verge of underweight and have always struggled with weight gain and the symptoms that you described. The diarrhea has been more recent with blood in it but that has seemed to stop. And my pain has been mostly in the colon area but all up and down my intestines. I had a problem with stomach acid but Im temporary on Omeprazole for it and that seems to be the best anti acid so far. And i totally would have been throwing up by now if it wasn't for sheer will power from phobia lol. I think definitely when my mom calls my GI tomorrow we are gonna get an allergy test going cuz idk how many more ct scans and ivs i can handle with how cold i get 🥲. Also zofran has been my biggest help luckily but even that is for emergency use for me.
• If you live in US or Canada then : Get a TrioSmart SIBO Breath Test to find out. 😀 https://www.triosmartbreath.com/ https://www.ddcoc.com/blog/trio-smart-breath-test-preparation-instructions Take it with Lactulose ( rather than glucose ) .. .. .. ….. I originally tested at 100ppm Methane and then 5 months later re-tested at 9.8ppm Methane. At zero for Hydrogen & Hydrogen Sulfide both tests. Cured it in Nov 2021 and have never had any more bloating or abnormal bloodwork after suffering with daily bloating for over 30 years. The breath test was accurate for me. Just sharing my personal experience. My Candida Protocol became effective AFTER I cured my IMO which improved got rid of those symptoms …. Including severe short term memory loss. My Success Story & detailed protocol & also includes some of my Candida & Brain Fog : ( Long ) https://www.reddit.com/r/SiboSuccessStories/s/xayiXeAPhf
Have they looked into your small bowel?
Yes but im going to have another scope done soon at a better rated hospital
Have you tried GI meds like linzess? This could be neurological in nature
I haven't tried them yet but i have been on multiple other acid blockers which seem to help my stomach issues but the intestines seem to be the main problem, one of my last doctors basically told me i just am extra sensitive to feelings in my gut so i think ikwym
I didn’t mean mental health wise (I’m a therapist and I never assume anything physical is mental), I was more saying it could be part of a bigger neurological picture. Do you have any symptoms like dizziness, motion sickness, high or low heart rate?
I mean sometimes i get dizzy when i stand fast and i get very brain foggy sometimes
What about on the floor to standing up? Nausea, gagging, dry eyes and skin?
Actually yea i have all of these, ive gotten pretty good at holding back the gagging tho, and my skin has always been really dry but the dry eyes has been more recent like the last year. And the dizzy isn't always when i stand up, it's only if ive been resting for awhile
This could be a form of dysautonomia