Still not diagnosed with bad digestive problems

Posted by ladydi22 @ladydi22, Jul 5, 2023

Years ago I started gastro problems and had a colonoscopy where I wasn't fully empty. My diagbosis was IBS. For years I have long bouts of diarrhea cramping a vomitting where nothing comes out but liquid, sometimes this can go on and off for hours. Then I can go long periods of time I will be ok and eat anything I want. I am so tired of not knowing what to eat. Current dr is having me do 2 stool panel tests, an ultrasound, and then a colonoscopy. I am starting to feel depressed. Right now my doc said go on a Lactose free diet. First dr it was FODMAP (forget that!) Before that it was Gluten free.... Why isnt there a way to disgnose this?!!!! Help

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Hi Ladydi22,
Just some thoughts that might help you. From my journey to digestive health I have found that I can not totally rely on Doctors and have had to do a lot of research myself. The Medical profession has just realized in the past few years the importance of digestion on health. They have not yet developed tests to diagnose the cause of every digestive complaint.

This article references a study which showed that 67% of IBS patients have SIBO. Have you been tested for SIBO? Your vomiting could very well result from gluten intolerance, have you been tested for that? There is a blood test for gluten intolerance and you need to be eating gluten for it to be accurate so ask for the test if you haven't had it already.
https://www.verywellhealth.com/facts-about-sibo-5649647
The FODMAP elimination diet can be done by eliminating one food group at a time for 2-4wks and then reintroducing it to see if you react. It is well worth the effort and the only way to determine if a food product is one of the sources of your digestive problems. From my digestive detective work I found I am sensitive to gluten, lactose, and fructose. I probably have non-celiac gluten sensitivity which makes me sensitive to oats and corn too.
As an example of the detective work you need to do: I recently found sorbitol, and artificial sweetener, in packaged tortillas. Sorbitol can cause digestive gas and may also be found in supplements. I find Magnesium Oxide gives me bad gas too and have found it is used in a lot of vitamins.

So you potentially could have a series of food sensitivities as the source of your problems.

It is depressing to have a digestive condition that isolates you and makes social interactions not so fun anymore. The good news is with some detective work you can help yourself and get to a better place and better health.

Best of luck!

REPLY
@beebe

Hi Ladydi22,
Just some thoughts that might help you. From my journey to digestive health I have found that I can not totally rely on Doctors and have had to do a lot of research myself. The Medical profession has just realized in the past few years the importance of digestion on health. They have not yet developed tests to diagnose the cause of every digestive complaint.

This article references a study which showed that 67% of IBS patients have SIBO. Have you been tested for SIBO? Your vomiting could very well result from gluten intolerance, have you been tested for that? There is a blood test for gluten intolerance and you need to be eating gluten for it to be accurate so ask for the test if you haven't had it already.
https://www.verywellhealth.com/facts-about-sibo-5649647
The FODMAP elimination diet can be done by eliminating one food group at a time for 2-4wks and then reintroducing it to see if you react. It is well worth the effort and the only way to determine if a food product is one of the sources of your digestive problems. From my digestive detective work I found I am sensitive to gluten, lactose, and fructose. I probably have non-celiac gluten sensitivity which makes me sensitive to oats and corn too.
As an example of the detective work you need to do: I recently found sorbitol, and artificial sweetener, in packaged tortillas. Sorbitol can cause digestive gas and may also be found in supplements. I find Magnesium Oxide gives me bad gas too and have found it is used in a lot of vitamins.

So you potentially could have a series of food sensitivities as the source of your problems.

It is depressing to have a digestive condition that isolates you and makes social interactions not so fun anymore. The good news is with some detective work you can help yourself and get to a better place and better health.

Best of luck!

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Hi Beebe, Thank you so much for your very informative post. I have been wondering if a Dietician would work with me - of course my insurance probably wouldn't cover that. I started a food diary this morning along with any symptoms I get. Also, just today I am starting to drink lots of water. One more question for you... Where do I start? There are so many tests and so many diets to pick from. FODMAPS I read doesnt work. What a puzzling health problem this is.
Once again, thank you so much. It is so nice to talk to people who understand💖

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@ladydi22

Hi Beebe, Thank you so much for your very informative post. I have been wondering if a Dietician would work with me - of course my insurance probably wouldn't cover that. I started a food diary this morning along with any symptoms I get. Also, just today I am starting to drink lots of water. One more question for you... Where do I start? There are so many tests and so many diets to pick from. FODMAPS I read doesnt work. What a puzzling health problem this is.
Once again, thank you so much. It is so nice to talk to people who understand💖

Jump to this post

Hi ladydi,
Great news you have started a food diary, remember to include your supplements in the diary too. I have found that Magnesium Oxide gives me horrible gas. Check the ingredients in your supplements and see if they contain any artificial sugars, I recently found sorbitol listed as an ingredient in gluten free tortillas! Some of the fibers they add to supplements and foods can be irritating while your gut is inflamed. (See #4 below for checklist).

I have found beef gelatin to be helpful in healing my gut. You can add it to water and drink it or make Jello, which is what I do. I make lemon jello sweetened with Monk fruit, it ends up a little sour since I try to limit my sugar exposure but tastes great to me. Be aware that store bought bone broth contains cartilage which can feed harmful gut bacteria so it is best to make your own at home. Home made chicken broth is great for healing too. I am retired so all of this detective work and extra food prep has been doable for me. Hope you can find the time to help yourself.
https://sibocenter.com/bone-broth-faqs/
1. Monash University, FODMAP diet. This Australian University has been a leader in FODMAP research. The FODMAP diet they developed is not meant to be permanent, it is a diagnostic tool. Their app is wonderful; if you find a category of food that bothers you the app has "safe" amounts of those foods that you can eat so you do not totally eliminate them from your diet. As you heal you may be able to add foods back in that originally tested as problems.
https://www.monashfodmap.com/
https://www.monashfodmap.com/ibs-central/i-have-ibs/starting-the-low-fodmap-diet/
2. Heather's IBS website. She sells acacia fiber and some other supplements which can be a turn off but I think her way of altering your diet is good for some people. Not all IBS has the same source that causes they symptoms.
https://www.helpforibs.com/diet/cheatsheet.asp
https://www.helpforibs.com/diet/fiber2.asp
3. Dr Nirala Jacobi SIBO doctor website. Dr Jacobi lives in Australia and has been a leader in working with SIBO patients and had SIBO herself. :

Podcasts:
https://www.thesibodoctor.com/2022/11/11/new-bi-phasic-diet-dr-nirala-jacobi/
4. Dr.Alison Siedbecker
https://www.siboinfo.com/about-dr-siebecker.html
SIBO SUPPLEMENT CHECKLIST
https://www.siboinfo.com/uploads/5/4/8/4/5484269/sibo_supplement_checklist.pdf
5. Top indicators of SIBO
https://nunm.edu/2019/05/sibo-indications/
Before you seek out the help of a Dietician get your blood tested for gluten intolerance and the SIBO test. Look for a Dietician that specializes in IBS. I went to a general Dietician who probably knew how to help Diabetics, Overweight folks, and kidney disease patients, but was no help to me.

Best of luck and happy hunting!

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I am a researcher by nature but then I get overloaded. I want to find one dctor and one support person I trust. I trust you!
Thanks again
Diane (LadyDi)

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@ladydi22

I am a researcher by nature but then I get overloaded. I want to find one dctor and one support person I trust. I trust you!
Thanks again
Diane (LadyDi)

Jump to this post

Hello Diana. I don't have an advice for you as I am in the same boat as you. I have bothersome digestive symptoms and after so many tests and scopes, no cause has been found. I am trying low FODMAP diet now along with empirical treatment for SIBO (as the test is not available where I live). I just want yo tell you you are not alone.

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I’ve done all the tests over 20 in 9 years , tried all the elimination diets , supplements, food dairy , Food allergy testing , Many SIBO and H- Plyori extended. Breath tests , ultrasounds , mri , you name it .
Been to Mayo Clinic for 3 major tests . 6 Gastro Drs in 2 states .
6-7 diagnoses.. still I suffer day and night .
I hate eating anything , because I have so many horrible symptoms.
My gut never stops churning , I deep wet belch over 1000 x a day and night . It kicks up my pvcs in heart ♥️. The belches all taste like gut lining but not acid , like sewer water .
I’m just as bad on empty stomach. I eat small and healthy for years .
Get IBS- D here and there .
Can’t eat out , can’t take out or order in . No fast food , no caffeine, low dairy , went gluten free didn’t work , did the No/ sugar / to low carb Keri diet . Didn’t work .
Just live on Ultra Pepto for years . And Heart Calm for my pvcs ( triple magnesium, 3 diff ) w/ Q-10 and potassium. Google it if you get pvcs or PAC’s w/ your digestive stuff .
It’s a living nightmare for almost a decade .
Like you , I’m usually at my wits end .
Plus sleep 💤 bad so daytime fatigue.
Going to yet another Gastro at new place in Orlando in Oct .
Don’t know what else to do .
You can hear my gut and intestines in next room. I wish you good luck 🍀 in your journey.

REPLY
@rozy288

I’ve done all the tests over 20 in 9 years , tried all the elimination diets , supplements, food dairy , Food allergy testing , Many SIBO and H- Plyori extended. Breath tests , ultrasounds , mri , you name it .
Been to Mayo Clinic for 3 major tests . 6 Gastro Drs in 2 states .
6-7 diagnoses.. still I suffer day and night .
I hate eating anything , because I have so many horrible symptoms.
My gut never stops churning , I deep wet belch over 1000 x a day and night . It kicks up my pvcs in heart ♥️. The belches all taste like gut lining but not acid , like sewer water .
I’m just as bad on empty stomach. I eat small and healthy for years .
Get IBS- D here and there .
Can’t eat out , can’t take out or order in . No fast food , no caffeine, low dairy , went gluten free didn’t work , did the No/ sugar / to low carb Keri diet . Didn’t work .
Just live on Ultra Pepto for years . And Heart Calm for my pvcs ( triple magnesium, 3 diff ) w/ Q-10 and potassium. Google it if you get pvcs or PAC’s w/ your digestive stuff .
It’s a living nightmare for almost a decade .
Like you , I’m usually at my wits end .
Plus sleep 💤 bad so daytime fatigue.
Going to yet another Gastro at new place in Orlando in Oct .
Don’t know what else to do .
You can hear my gut and intestines in next room. I wish you good luck 🍀 in your journey.

Jump to this post

Oh Rozy, I am so sorry to hear how long you have endured so much💖 This has
got to be the most misunderstood and hard to diagnose medical issue. People
used to think I was making it up and now they finally understand. God give
us the strength to keep trying (i am getting weary and depressed)🌷☀️

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Click on that . It’s kinda funny and so true !

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@rozy288

For sure ….. 😱🤔🥹🙃

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🤣😂🤣😂

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