Desperate for IBS Help

[Anonymous]

Anonymous wrote:I’ve had IBS since my 20s. I’ve cut out all dairy, alcohol, and sugar. Tried going gluten free but it didn’t make a difference so I added it back. I’ve been on elimination diets on and off for 30 years including low-FODMAP to no avail. But I suspect I haven’t been rigid enough and because my condition is such a part of me, I’m not objective anymore about my symptoms. I’ve never had a solid poop, I’m always bloated and uncomfortable, and I can’t schedule morning activities due to bathroom issues. My Vitamin D levels are dangerously low (11-12) despite supplementation and osteoporosis is looming.

I’ve had colonoscopies, endoscopies, and CTs out the wazoo. I’m on Lexapro for anxiety. I’ve got a referral for a new GI doc specializing in IBS. I think I could use a good dietician and I’m about to start another elimination diet. What else can I do???

If you have managed IBS successfully, what helped you? Any dietician recommendations?

Are by chance not able to burp (Retrograde cricopharyngeus dysfunction)? I ask because it can be misdiagnosed as IBS

[Anonymous]

Anonymous wrote:Get tested for SIBO.

Small Intestinal Bacterial Overgrowth

I’ve not been tested. I’ll ask about it, thanks.

[Anonymous]

It sounds like your IBS could be linked to SIBO. There is some very useful research being done at Cedars Sinai in Los Angeles by Dr. Mark Pimentel and he has developed both advanced SIBO breath and blood tests that are available through a company called TrioSmart. Many of his webinars that are designed for patients are available on his website and there are also some on the Gemineli/TrioSmart website. Locally, Dr. Poorvi Shah DO is a board certified integrative medicine physician who is familiar with and uses Dr. Pimental’s protocol to treat SIBO patients. She is in Falls Church on Park Ave. I had struggled for years and have other autoimmune conditions, so my healing path took about a year, but all of my GI symptoms are 99% improved. I am still not able to eat raw vegetables and salad greens and some other things, but that is minor now that everything else is resolved. Hope this is helpful. Good luck. Don’t give up.

[Anonymous]

Anonymous wrote:It sounds like your IBS could be linked to SIBO. There is some very useful research being done at Cedars Sinai in Los Angeles by Dr. Mark Pimentel and he has developed both advanced SIBO breath and blood tests that are available through a company called TrioSmart. Many of his webinars that are designed for patients are available on his website and there are also some on the Gemineli/TrioSmart website. Locally, Dr. Poorvi Shah DO is a board certified integrative medicine physician who is familiar with and uses Dr. Pimental’s protocol to treat SIBO patients. She is in Falls Church on Park Ave. I had struggled for years and have other autoimmune conditions, so my healing path took about a year, but all of my GI symptoms are 99% improved. I am still not able to eat raw vegetables and salad greens and some other things, but that is minor now that everything else is resolved. Hope this is helpful. Good luck. Don’t give up.

This is so helpful thanks. I’ll ask my doctor to test for SIBO. I just started taking a bile acid binder yesterday and will see if that makes a difference. I’d love to stop this low-FODMAP diet. I’m starving.

[Anonymous]

You need to give diet changes at least a 5 month trial.

It took me 2 years of diet changes and eating the few food regimen to go into remission and have normal bms.

[Anonymous]

Anonymous wrote:You need to give diet changes at least a 5 month trial.

It took me 2 years of diet changes and eating the few food regimen to go into remission and have normal bms.

This is absolutely not recommended. The elimination phase of the low FODMAP diet is nutritionally deficient. It is not advised to stay in the elimination phase for any more than 2-4 weeks.

[Anonymous]

Anonymous wrote:

Anonymous wrote:It sounds like your IBS could be linked to SIBO. There is some very useful research being done at Cedars Sinai in Los Angeles by Dr. Mark Pimentel and he has developed both advanced SIBO breath and blood tests that are available through a company called TrioSmart. Many of his webinars that are designed for patients are available on his website and there are also some on the Gemineli/TrioSmart website. Locally, Dr. Poorvi Shah DO is a board certified integrative medicine physician who is familiar with and uses Dr. Pimental’s protocol to treat SIBO patients. She is in Falls Church on Park Ave. I had struggled for years and have other autoimmune conditions, so my healing path took about a year, but all of my GI symptoms are 99% improved. I am still not able to eat raw vegetables and salad greens and some other things, but that is minor now that everything else is resolved. Hope this is helpful. Good luck. Don’t give up.

This is so helpful thanks. I’ll ask my doctor to test for SIBO. I just started taking a bile acid binder yesterday and will see if that makes a difference. I’d love to stop this low-FODMAP diet. I’m starving.

Keep us posted!

[Anonymous]

SIBO. Get tested now. And in case it is, good luck. It is a pain to deal with it.

[Anonymous]

Try Florastor with each meal. Generic is ok.

[Anonymous]

To the OP I have no suggestions but hope you find the issue and solution. I'm sorry you are going through this..

[Anonymous]

OP here with an update. My NP agreed to start me on Cholestryamine until I can be seen by an IBS specialist in two months. Voila! After three days on the medication, I had my first formed poop in my life, which has continued for the last three days! I can’t believe it! Thanks so much for the PP who suggested BAM.

I still have lots of questions. Why did it take so long to figure this out when I’ve been evaluated for Chrohn’s off and on for nearly 40 years and just about everything else? Why did no one suggest this when I had my gallbladder removed? Why do doctors continue to recommend a low-FODMAP diet when I’ve tried it repeatedly with no relief?

Over the past two years I’ve tracked my diet on and off and just now in light of the BAM suggestion I’m discovering a constant: High overall fat 70-80 g and 45-50% of daily calories ) from what I thought were healthy sources of fat - salmon, trout, mackerel, nuts, avocado, olive oil. The recommendation for someone with BAM is less than 40 g or 20-25% of total calories.

So for now I’m ditching the low-FODMAP diet, taking my Cholestryramine, and trying to modify my diet without giving up everything I love. I just bought a cookbook for low-fat Mediterranean meals.

I’ll update again once I’ve seen the IBS specialist but for now, I’m just so happy to have a plan that finally makes sense. And I owe it all to this thread. Thank you!!!

[Anonymous]

Thanks for the great update OP! DCUM came through!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:GLP 1

NO.

Lots of people with IBS are finding relief.

Very true for me. I've had IBS since I can remember and it's been much more manageable with GLP1.

[Anonymous]

Anonymous wrote:

Anonymous wrote:You need to give diet changes at least a 5 month trial.

It took me 2 years of diet changes and eating the few food regimen to go into remission and have normal bms.

This is absolutely not recommended. The elimination phase of the low FODMAP diet is nutritionally deficient. It is not advised to stay in the elimination phase for any more than 2-4 weeks.

If you have explosive loose stool for years that is also nutritionally deficient. In my case it took many months to reduce the inflammation in my gut. Someone with loose stool will by definition be nutritionally deficient. I have normal bm's and normal digestion but it really took 2 years of the few foods regimen to get there. It takes a long time for the gut to heal. It is quicker for young people, longer for older people.

[Anonymous]

Anonymous wrote:OP here with an update. My NP agreed to start me on Cholestryamine until I can be seen by an IBS specialist in two months. Voila! After three days on the medication, I had my first formed poop in my life, which has continued for the last three days! I can’t believe it! Thanks so much for the PP who suggested BAM.

I still have lots of questions. Why did it take so long to figure this out when I’ve been evaluated for Chrohn’s off and on for nearly 40 years and just about everything else? Why did no one suggest this when I had my gallbladder removed? Why do doctors continue to recommend a low-FODMAP diet when I’ve tried it repeatedly with no relief?

Over the past two years I’ve tracked my diet on and off and just now in light of the BAM suggestion I’m discovering a constant: High overall fat 70-80 g and 45-50% of daily calories ) from what I thought were healthy sources of fat - salmon, trout, mackerel, nuts, avocado, olive oil. The recommendation for someone with BAM is less than 40 g or 20-25% of total calories.

So for now I’m ditching the low-FODMAP diet, taking my Cholestryramine, and trying to modify my diet without giving up everything I love. I just bought a cookbook for low-fat Mediterranean meals.

I’ll update again once I’ve seen the IBS specialist but for now, I’m just so happy to have a plan that finally makes sense. And I owe it all to this thread. Thank you!!!

Great update! Glad you are feeling better!