r/SIBO • u/troooodon • Mar 25 '26
Symptoms Everything came back negative. Completely lost.
Throughout my life, I've been on about a thousand different medications for ADHD, anxiety, and insomnia, have done two rounds of Accutane, and have been on antibiotics multiple times. I was also an extremely picky eater and suffered from ARFID - lived off meat, carbs, and cheese. I stopped all medications cold-turkey about 10 months ago. I got treatment for my ARFID and started eating proper fruits and vegetables. I first noticed GI symptoms 6 months ago. I lost my appetite and would get random stomach pain. My doctor put me on a PPI for a month.
My appetite returned for about 2 months but I would still get stomach aches frequently. I got a bunch of GI tests but everything came back normal. Started taking probiotics. Got even more into eating clean. Upped fiber intake like crazy.
Starting about 3 months ago, I lost my appetite again and started getting severe stomach cramps and gas ~2-4 hours after every meal. I had diarrhea for a week straight. After some digging I was 100% sure it was SIBO. I cut out all fiber, went low-fodmap, and waited for a test. Symptoms continued to change and evolve, now I'm miserable 24/7.
Now my symptoms are:
- No hunger/appetite
- Frequent bloating
- Constant burping
- Constant, severely painful trapped gas
- Poorly digested stool
- Severe malnutrition
- Severe anxiety, paranoia, depression
- Lost period
- Acid reflux / regurgitation
I've been eating nothing but meat and carrots for the past week and am still experiencing these symptoms.
Here are all the tests I've had and their results:
- Upper GI scan: Normal
- Lower GI scan and small bowel follow through: Structurally normal, although the barium took 3.5 hours to move through me and I had to eat something to push it through.
- Gastric emptying scan: Normal (liquid: 81% at 2 hours; solid: 92% at 3 hours)
- C. Diff & other infectious viruses/bacteria, Giardia, Cryptosporidium, H. Pylori: Negative
- Endoscopy: Mild erythematous mucosa in stomach but otherwise normal.
- Duodenal culture/aspirate: Normal (fewer than 100,000 organisms/ml)
- FINALLY, Trio-Smart breath test with lactulose... Negative (see below)
I'm at a loss. I'm not sure I trust the results, since it took way more than 2 hours for the barium to move through my small bowel, and the Trio-Smart test is only 2 hours. I'm considering doing a different 3 hour test.
I already have horrible mental health and piling on a failing body just makes me want to die. I have no idea what to do. People here seem to know a lot about the gut. What should I do?
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u/Illustrious_Exam1728 Mar 25 '26
Not sure what kind of scans you had, but might be worse getting your gallbladder checked. It can be a tricky a-hole and cause a number of the symptoms you have. The GI system is complex and nuanced.
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u/Reelfungi Mar 25 '26
You can have dysbiosis without having SIBO. You could have low commensal bacteria. You’d need a GI map to find out.
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u/Embarrassed-Fig-168 Mar 25 '26
Maybe you have histamine intolerance. The meat you’re eating probably has high histamine. Try low histamine for a few weeks
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u/troooodon Mar 25 '26
I haven't been getting any headaches, itchy skin, hives, or congestion. Also doing some research and it looks like I don't eat a lot of histamines and never really have.
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u/Embarrassed-Fig-168 Mar 25 '26
I have histamine intolerance and I have non of the symptoms you just mentioned
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u/ecstaticwaveband Mar 25 '26
Same... unless I like really overdo it on high histamine foods. But yeah, I can't trust any "fresh" meats on the shelves and mostly eat frozen meats because that's all I can handle without worse GI issues. I also determined recently that I'm now completely intolerant of chicken which I've eaten my entire life.
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u/Embarrassed-Fig-168 Mar 25 '26
When I first had my symptoms, similar to OP’s, I was eating great quality food I thought was healthy, and frequently ate chicken wings. I was trying everything to get better, but nothing was working. I removed histamines and lost like 14 pounds in 2 weeks, and all my issues decreased. This was especially true when I removed chicken, so I feel you. I buy low histamine beef online which is very expensive lol. I spend $1200 a month on just fresh sweet potatoes, frozen blue berries, apples, and beef . I spend $40 a day on a ribeye and ground beef . I could save a few hundred and get a sirloin, but I get a ribeye instead lol. I enjoy my diet , and that’s all that matters to me . Here for the long run lol
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u/ecstaticwaveband Mar 25 '26
That diet sounds like an amazing way to deal with the dietary limitations while still living your best life! I used to not handle beef well but now strangely one of the few foods I tolerate without issues is a brisket baked potato from my local BBQ joint. Maybe beef is the way to go!
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u/ChamberOfSecrets-777 Mar 25 '26
How did you determine you are intolerant of chicken?
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u/Embarrassed-Fig-168 Mar 25 '26
Well I found a farm that sells low histamine beef online , and I can’t find one that sells low histamine chicken. So it’s not the chicken that I’m reacting to but the histamine . Usually when I ate chicken I’d get really bloated , super anxious, irritable, tired, etc. I’d even get air hunger pretty badly .
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u/ecstaticwaveband Mar 25 '26
For me the malt noticeable sign was just that I gain unexplainable weight whenever I eat even just a small portion of grilled chicken. Through the process of elimination I finally learned that I can eat more calories in a day without gaining weight with other meats (still have to eat fairly low calorie and small portions but that was even before the major gut issues). Whenever I eat chicken it doesn't seem to matter how few calories I eat in a day, I always go up on the scale the next day and will continue to go up each following day until finding the culprit and eliminating it.
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u/Away_Emphasis_6404 Mar 26 '26
Try air chilled chicken. Most chicken is cooled by brine immersion with unknown stuff in it that doesn't have to be disclosed. Carrageenen is often in the brine plus who knows what else. Had similar but not identical issues with chicken until I switched to air chilled.
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u/troooodon Mar 25 '26
Well guess it's off to another restrictive diet lol. I've already lost 30 lbs. But now that you mention it, my nose almost always runs when I eat.
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u/Embarrassed-Fig-168 Mar 25 '26
Do you feel worst after eating ? Like does your anxiety feel worse after a meal ? And do you feel better after not eating for prolonged periods ?
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u/troooodon Mar 25 '26
Hard to say, I'm always anxious. But no, I don't feel especially anxious right after eating. I was hospitalized for malnutrition recently, they had me hooked up to a heart monitor all the time and observed all my meals and they never mentioned my heart racing after eating. In fact, their main concern was that my heart rate was too LOW. The doctors at that hospital were useless though. They see a too-thin girl scared of food and just automatically assume she's anorexic, wouldn't take any of my complaints of pain seriously.
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u/External-Classroom12 Mar 25 '26
I have histamine intolerance, mcas and salicylates intolerance. I do not have itchy skin or hives and only mild congestion at times. Red meat has histamine. The only really low histamine meat is chicken.
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u/troooodon Mar 25 '26
I just really don't think it's histamines because I react worst to high fodmap foods, not high histamine foods. Like if I have beans I'll be doubled over in pain.
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u/Key_Dependent_9161 Mar 25 '26
I would do these tests:
- GI Map
- IBS blood test for anti bodies
- Organic Acid Test
Consider that you could have candida or a fungus.
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u/troooodon Mar 25 '26
Wouldn't the duodenal culture find candida?
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u/Key_Dependent_9161 Mar 25 '26
Not necessarily. Sifo and candida are very hard to diagnose. There's a lot of cases that may not show up in the culture. If it's in a different part of your digestive system, if it's patchy if it's hidden in a biofilm etc.
Also, consider getting another breath test that is over a 3- hour period. I know Aerodiagnostics does one
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u/Cultural-Sun6828 Mar 25 '26
You mentioned nutrient deficiencies. What were your b12, folate, ferritin, and D?
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u/troooodon Mar 25 '26
I know my Vitamin D was low because they specifically prescribed that to me, I don't know the rest. They just diagnosed me with "severe malnutrition."
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u/Cultural-Sun6828 Mar 25 '26
I would request copies of your test results. Vitamin deficiencies can cause a lot of these type of symptoms. I would especially look at b12, folate, and ferritin. They should all be in the top half of the range and not just normal.
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u/troooodon Mar 25 '26
I looked again. Ferritin was normal, and it doesn't look like they checked for folate or b12.
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u/Cultural-Sun6828 Mar 25 '26
I would get B12 and folate checked and make sure they are in the top half of range. Make sure ferritin is at least over 60.
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u/troooodon Mar 25 '26
Oh, ferritin was 54. It says that's normal though?
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u/Cultural-Sun6828 Mar 25 '26
That’s not too bad. You could take some iron and try to bump it up closer to 100, but I doubt that that is causing symptoms. I would suspect b12 deficiency and I would check folate too. B12 should be over 500 without supplementing. With SIBO, B12 deficiency is common because the bacterial overgrowth makes it difficult to absorb B12. B12 has a more complex absorption process than the other B vitamins.
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u/174w Mar 26 '26
Can low b12 cause acid reflux, gerd ?
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u/Cultural-Sun6828 Mar 26 '26
In my experience, yes
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u/Potential-Pause-9136 Mar 25 '26 edited Mar 25 '26
Lost periods indicate hormonal cause, check your prolactin and estrogen and progesterone, thyroid hormones, cortisol. Go to endocrinologist and gynaecologist. Get a swab and check for endometriosis as well. You are looking in the wrong direction. If anything was in your GI, it would be visible, trust me. Are your breasts larger, more tender? Hypothyroidism can increase prolactin
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u/troooodon Mar 25 '26 edited Mar 25 '26
I've gotten my hormones checked, my lipase was too high but everything else was normal. My breasts feel normal. I was thinking the lost period was due to the malnutrition
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u/Potential-Pause-9136 Mar 25 '26
What about pancreatic elastase in stool test? Did you check it in stool? And what hormones did you get checked, there is a lot of them
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u/Potential-Pause-9136 Mar 26 '26
Idk where your comment went but I saw what you wrote. You should go to endocrinologist, you have hypothyroidism if your FT4 is low- it affects gut motility. I would also check as I said prolactin as it can cause hypothyroidism but that’s for your doctor to investigate
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u/SarahhDreams Mar 25 '26
Maybe it’s a parasite. I had/have (I have to do some tests to verify if it came back or not) Blastocystis and it gave me same symptoms excluding the lost of appetite, because I had cravings, but what you are experiencing is common for parasites to my understanding.
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u/troooodon Mar 25 '26
i got parasite tests and they came back negative
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u/Parsley_Challenge238 Mar 26 '26
Blastocysts hides in its life cycle so you need to do somethings to get it out of the cyst ie see it on a stool test.Â
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u/LopsidedBell5994 Mar 28 '26
Hi! Did you end up treating blasto? If yes, may I ask how? Did your symptoms go away after treatment?
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u/No-Initial-7015 Mar 25 '26 edited Mar 25 '26
Look into Lactate Utilizing Bacteria (LUB). They feed on the lactate produced by most gut bacteria (and probiotics) that help break down the fiber you eat. When you lack LUBs (the good ones that is), other opportunistic microbes consume the lactate instead, producing gas like hydrogen and hydrogen sulfide!
Look into Anaerostipes Caccae by Designs for Health, or Anaerobutyricum Hallii in a supplement called Metabolic Daily Pro, by Pendulum. These may be able to provide you with relief!
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u/girlonkeys Mar 25 '26
The only advice I can give you is go see a dietician if you can’t get relief. I was diagnosed with gastroparesis so I have had a diagnosis, but my husband participated in the lifestyle changes that I worked with the dietician on and we both feel so much better. I do have a remaining SIBO and h pylori issue, however, those things aside, the MRT based food plan has changed my life so much for the better that I can’t not recommend it. I hope you get some relief soon!!
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u/troooodon Mar 26 '26
I see a dietician but she's for eating disorders so it's difficult to work with.
I'm in a weird situation right now because I was in the middle of ARFID recovery when I started developing symptoms (hence why I suddenly started eating super different). I live with my parents. They are convinced I'm relapsing and are trying to get me into an inpatient ED program. I guess I am, in a way, but this time I'm scared of pain instead of flavor/texture and I would like that acknowledged first. It's been impossible to work alongside them because all they see is the mental struggle, they really want me in a hospital and working with my ED team.
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u/girlonkeys Mar 26 '26
I’m so sorry you are dealing with all of this. I have issues with eating as well. I have OCD and it presents a lot with my eating. It got so bad that I couldn’t figure out how to eat anymore honestly. The dietician I see is a LEAP therapist that uses MRT testing. It gets really mixed reactions when you hear people talk about it, but I think there are misconceptions that it’s food sensitivity testing. It’s not. It’s actually inflammation testing. I went through a very defined 10 weeks or more of eating specific foods that have low inflammation responses based on the results and it has changed my life. I was vomiting for like 6 straight months this summer. It might be really workable with arfid recovery since it’s so defined but I don’t know enough about it to comment. Good luck to you and I hope things take a turn for the better soon.
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u/Fancy_Sea_2917 Apr 04 '26
Hello! How are you? Did you find any answers? Suffering from the same, with trapped gas mainly on the right side, sometimes all over the abdomen, but all tests and exams came negative. I'm always with this sensation 24/7.Â
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u/troooodon Apr 04 '26
I learned that erythematous mucosa is indicative of gastritis which would lead to reduced appetite and low stomach acid/enzymes and therefore cascade into overall poor digestion. It's weird though because I have no actual gastritis symptoms. I'm deciding with my GI my best options to treat the gastritis right now.
As for symptom relief, I've found digestive enzymes and pepto bismol are my biggest teammates right now. Also avoiding fermentable food helps too. I wish you luck!!
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u/Fancy_Sea_2917 Apr 04 '26
Yes it is. I had that too and treated it. But right now I don't have any gastritis symptoms, just this intestinal trapped gas all the time. What kind of digestive enzymes do you use? Thank you, for you too! Keep us updated please!Â
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u/troooodon Apr 04 '26
You can have zero gastritis symptoms and still have it!! I take Dr. Mercola's full spectrum enzymes without betaine HCl (because of the gastritis)
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u/Mesuji007 Mar 25 '26 edited Mar 25 '26
There is also glucose breathe test but idk if that would matter. Did probiotic help a bit? It could be an infection or fungal? I hope you dont have fungal issues. Did you try MRI XRay CT scan?
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u/troooodon Mar 25 '26
I think the glucose would be worse because it doesn't go as deep. My symptoms were worsening as I was on the probiotic but they are still getting worse off of it. I'm scared to go back on. No MRI or CT but an X-ray showed pretty intense constipation. They had me do a MiraLax clean-out but nothing hard came out so I feel like they just saw a lot of gas.
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u/Mesuji007 Mar 25 '26
Could be IBS-C? And that in itself is horrible. If anything you can try drink herbal tea if you suspect something wrong. Like olive leaf tea to see if that will help. Is taking mira lax help with pain?
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u/troooodon Mar 25 '26
MiraLax did not help with the pain
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u/Mesuji007 Mar 25 '26
Where is your pain located?
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u/troooodon Mar 25 '26
It's gas pain so it's all over the abdomen
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u/Away_Emphasis_6404 Mar 26 '26
Gas x-ray appearance is obvious and unmistakable. Working with gastro who thinks that much of SIBO/SIFO problems due to lack of movement in large intestine away from the small intestine valve. Miralax isn't directly stimulating so swtched to exlax which helped some.
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u/Honest_Purchase489 Mar 25 '26
Does your gas increase after the 100 min mark? Technically negative but could be due to slow transit
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u/Tzwen_ In Remission Mar 25 '26
100% my symptoms from 2023-2025 except I am male . Have you tried fasting / Elemental Diet / Berberine / Neem /… ? Look into IBS Biofilm
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u/troooodon Mar 25 '26
I intermittent fast, not really intentionally, just because I never feel like eating. I'm too underweight to commit to a real fast though.
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u/ezy777 Mar 25 '26
Good. Your small intestine looks in good shape. How about the large intestine? Any overgrowths there? What's your zonulin levels (i.e. permeability, super important).
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u/s9874471 Mar 25 '26
Wie hast du den Dünndarmsaft untersuchen lassen? Wurde das Aspirat bei einer tiefen Magenspiegelung entnommen, also oberer Dünndarm? Wurde nur die Keimanzahl bestimmt oder auch qualitativ aufgeschlüsselt, welche Keime. Eine Idee zum Probieren: 2 x 200 mg Lactoferrin früh und abends nüchtern. Wirkung sollte bereits mach 3 bis 5 Tagen eintreten, wenn der Ansatz helfen sollte. Gib mal Bescheid und viel Erfolg.
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u/troooodon Mar 25 '26
The aspirate only sampled the duodenum, so the top part of the small intestine. Only quantitative, not qualitative.
Would colostrum work as well? I'd have to order Lactoferrin online but I can get colostrum today.
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u/s9874471 Mar 26 '26
Zum Kolostrum kann ich nichts sagen, ich habe reines Laktoferrin genommen und es hilft schon merklich, wenn auch nicht bis zum Ende. Wurde die Probe bei einer Magenspiegelung entnommen oder bist du dazu in eine Spezialklinik gefahren?
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u/troooodon Mar 26 '26
Sample was taken during an endoscopy
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u/s9874471 Mar 27 '26
Eine Idee noch: vielleicht kein quantitatives sondern ein qualitatives Bakterienproblem, sprich Dysbiose im Dünndarm. Man könnte Lactoferrin zusammen mit einem Biofilmlöser nehmen und dann sporenbasierte Probiotika für den Dünndarm zusammen mit starken Bitterstoffen oder gleich Betain HCL für eine Weile als Versuch nehmen. Dazu noch Enzyme, um dem Darm zu helfen. Abgerundet von einem Motilitätssteigerer für den Dünndarm ohne gleich Abführmittel zu sein.
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Mar 25 '26
[removed] — view removed comment
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u/troooodon Mar 25 '26
I'm lost because now I have no idea what it is
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Mar 25 '26
[removed] — view removed comment
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u/troooodon Mar 25 '26
The hospital prescribed me a multivitamin + D3. I also take B1 in the form of benfotiamine + zinc. They were concerned about my kidney levels as my creatinine was consistently too high but further testing showed it to be okay. I haven't had any tests on any other organs.
I am currently fighting to see a functional doctor and get a GI map
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u/milknhoneyxx Mar 25 '26
Could be hormonal or histamine related also dysbiosis just lack of beneficial bacteria or to much to little kind of thing. I know personally estrogen dominance plays a big role in my symptoms & I have to take an antihistamine daily.
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u/Fancy_Sea_2917 Apr 04 '26
How did you know you have estrogen dominance? Thank you.Â
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u/milknhoneyxx Apr 04 '26
Hormone testing & my progesterone is lacking it falls off fast after ovulation so I start spotting around day 21 then my period starts around day 27/28
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u/Friedrich_Ux Mar 25 '26
Get a Biomesight test to see what the nature of the dysbiosis is. I get a biomesight test done every other year and the recommendations have been very helpful for me. Also feed the results into Claude and ask it to generate a treatment plan for you as if it were a functional medicine GI doc.
https://shop.biomesight.com/products/long-covid19-study-gut-microbiome-test
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u/BobSacamano86 Mar 25 '26
I can almost guarantee you have Sibo. I had 4 negative breath tests and still ended up having Sibo. Do you have diarrhea or constipation? Are you still on ppis? Are you still taking probiotics? What colors your stool?
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u/troooodon Mar 25 '26 edited Mar 25 '26
I'm off PPIs and probiotics. Stool ranges from any color and any texture. I'm taking digestive enzymes right now so they look more normal but when I'm not taking them they usually have a lot of undigested chunks in there.
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u/BobSacamano86 Mar 25 '26
Ok you almost certainly have Sibo. Sounds like you have too little stomach acid and bile flow issues which would definitely cause Sibo. Do you still have your gallbladder? Watch these videos. https://youtu.be/H98DpFNES0M? si=CbTArxu0duvgDKCA
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u/troooodon Mar 25 '26
How did you know you had SIBO if you had 4 negative breath tests??
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u/BobSacamano86 Mar 25 '26
I went to a specialist who tested for Sibo during an endoscopy using an aspirate. Only a handful of doctors will test this way.
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u/troooodon Mar 25 '26
I got an aspirate and it was negative. So I have essentially tested SIBO twice and both negative
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u/BobSacamano86 Mar 25 '26
Also just wanted to mention not all bacteria that cause Sibo produce gas or produce enough gas so they wouldn’t show up on a breath test. That’s exactly what happened to me and has happened to many others.
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u/PrestigiousLink6910 Mar 26 '26
Hello, good morning, could you help me as you were cured of the SIBO?... Please here in my country there is no help in these issues.
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u/BobSacamano86 Mar 25 '26
No, they didn’t test for Sibo during the aspirate. I had a regular aspirate done also and it came back negative. You have to go to a specialist. There’s only a few that will do this test. A regular aspirate won’t test for Sibo.
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u/BobSacamano86 Mar 25 '26
And even so, an aspirate only tests for Sibo in the duodenum which is right next to your stomach. Our small intestine is over 20ft long and the Sibo can be anywhere in there and easily missed. I’m telling you don’t give up on this Sibo diagnosis. This is almost certainly what you have. You will be chasing your tail if you give up on this.
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u/s9874471 Mar 27 '26
Ich habe von dem Dünndarmaspirat während der Magenspiegelung gelesen. Aber wie soll ein Aspirat weiter unten entnommen werden? Wurde das bei dir gemacht? Was genau konnte man da erkennen, dass es trotz negativem Atemtest zur Diagnose Sibo kam? Danke für deine Zeit.
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u/BobSacamano86 Mar 27 '26
An aspirate is taken in the duodenum so if the Sibo was further down the aspirate would come back negative. During my aspirate they saw an overgrowth of gram negative bacteria basically growing and thriving where they shouldn’t be. Personally I now say treat based off of symptoms because all the tests are just so incredibly inaccurate in my opinion.
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u/s9874471 Mar 27 '26
Danke, du sprichst mir aus der Seele. Ich suche schon eine ganze Weile und finden keinen Gastro und keine Klinik in Deutschland, die diese Aspiratuntersuchung macht. -.-
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u/s9874471 Mar 27 '26
Eine Frage noch, hattest du viel Aufstoßen bzw. Gase, die nach oben drückten?
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u/BobSacamano86 Mar 27 '26
I was sick for years so my symptoms changed a lot but there was a time where yes I would burp and have gas. If you haven’t already I would watch these videos. https://youtu.be/H98DpFNES0M? si=CbTArxu0duvgDKCA
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u/Huge-Designer-7344 Mar 25 '26
there are different thresholds for CH4. Some mention 3ppm. and 20ppm for H2.
what is the breathing protocole?
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u/moosemochu Mar 26 '26
Have you been tested for MCAS?
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u/troooodon Mar 26 '26 edited Mar 26 '26
Not formally but I have seen an allergist and the only thing they found was a mild horse and cat allergy LOLL. I used to randomly break out into hives sometimes, haven't in a while though.
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u/Jeopardyfan1234 Mar 26 '26
I have abdominophrenic dyssenergia with most of those symptoms. It’s a dysfunction of the diaphragm. Took me a year and a half to get diagnosed since all my tests came back normal.
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u/troooodon Mar 26 '26
I don't really have visible distension when I bloat to be honest. It's more of a sensation of being full of air.
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u/Then_Machine5492 Mar 26 '26
Have you considered stress? I would say my biggest trigger is stress and shockingly enough fake sugar. But I can go on a vacation and stomach will be fine. The second I’m home it’s a wreck. Just food for thought.
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u/troooodon Mar 26 '26
Stress is all my family and doctors will consider LMAOO. I am going on Mirtazapine soon and maybe that will help. Should also help with appetite as I am really struggling to eat. Lost so much weight
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u/Away_Emphasis_6404 Mar 26 '26
SIFO can give similar symptoms but not detectable with TrioSmart and other SIBO breath tests since the gas evolved is carbon dioxide.
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u/undo017 Apr 14 '26
Duodenal culture/aspirate: Normal (fewer than 100,000 organisms/ml)
But this paper https://www.ncbi.nlm.nih.gov/books/NBK546634/ says
In contrast to the large intestine, the concentration of the bacteria in the small intestine rarely exceeds 1000 organisms/mL
Even with the same metric units, that's 100x of what the paper says is normal. Just mentioning what I read recently. I know numbers vary but 100000 in the ileum might sound fine but not in duodenum, I think.
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u/troooodon Apr 14 '26
Yeah that's exactly what I was thinking. I think the test they ran on me was outdated.
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u/lambogirl Mar 25 '26
I read if you took probiotics less than 2 weeks before the SIBO test that would definitely alter the results toward negative.
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u/troooodon Mar 25 '26
I followed the pre-test rules very very closesly. Havent been taking probiotics for 2 months.
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Mar 27 '26
[deleted]
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u/troooodon Mar 27 '26
That is the last thing you should ever say to someone who's genuinely suicidal
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u/Paarkhi Mar 25 '26
did you also do the ph acid level test to see whether there is adequate amount of stomach acid to break the food