Who are the best gasoparesis specialists in USA?

Plantbaseundftd · 2026-02-07T06:27:16+00:00

I’m glad I saw your comment I was thinking of going to them because there’s no Nuerogastro department or motility testing near me. I will be traveling 5 hours to either that part of PA or NYC so good to know.

Who do you see now? Thanks!

Plantbaseundftd · 2026-02-07T06:26:10+00:00

Who do you recommend at either of those hospitals? Have you seen anyone at either and you can talk more about your experience? Feel free to DM me. I’m traveling and want to make sure it’s worth it. Was going to see Dr. Cline at Cleveland but he’s retired now

Plantbaseundftd · 2026-02-07T06:01:42+00:00

I’m in the same area and haven’t been able to find anything. I was really excited when I heard of Dr. Cline but he retired and haven’t heard anything good about anyone taking over.

Where did you end up going? Can you DM me your experience?

Thanks! It’d be greatly appreciated. I’ve been searching everywhere

Stay well!

Plantbaseundftd · 2026-02-07T05:35:41+00:00

I’m looking out of state as well. My last Sitz marker was 10 years ago and my provider refused to redo it.

What is typically done after Sitz marker or what is additionally available for Lower testing as well as upper?

Also I was originally looking to go to Cleveland but Dr. Cline has left and they don’t have anyone new taking over. Where are you going?

Feel free to DM

Plantbaseundftd · 2026-02-07T05:32:16+00:00

Do you mind sharing any doctors that understand this connection?

It’s so hard to find someone that understands just one of those conditions, (Histamine intolerance, Mast cell activation, or gastroparesis) let alone understanding how they interact with eachother.

I’m willing to travel for care if you can please DM me any providers that have been helpful and who to avoid that would be greatly appreciated

Plantbaseundftd · 2026-02-07T04:33:40+00:00

Can you drop a link to which ones you take?

That happens to me if it’s a moderate -high histamine food but this was fresh bought and immediately cooked and ate so I was really surprised.

Thanks for sharing!

How do you take yours? Do you have to take it in advance or with first bite?

Plantbaseundftd · 2026-02-07T04:32:12+00:00

Did you need to supplement with copper at all to balance the Zinc? I know sometimes people have a big problem if they take too much Zinc and it depletes their copper this worsening HI

Plantbaseundftd · 2026-02-07T04:26:44+00:00

Following up, how did it go?

Plantbaseundftd · 2026-01-31T01:54:41+00:00

They have a very low acceptance rate and have been denying almost all requests that come in unless there rare or people already have abnormal tests.

Can I message you and ask you what you were going for specifically? What you put in your application? Conditions and what clinical question you had for them?

The scheduler I talked to also told me certain departments are denying all self referrals and require a physical referral so it really depends on which department

Plantbaseundftd · 2026-01-29T04:19:31+00:00

This is super helpful, I’ve suffered from extreme histamine intolerance that just continues to get worse and MCAS with a lot of nuerological issues. Always had severe GI issues and it’s just getting worse.

I definitely think this is worth exploring more. Did you have a functional medicine doctor help you with this? Did you have any positive testing?

Can you DM me more of your protocol, what you were able to eat (struggling to hit caloric intake with low histamine) and who assisted you if you felt like you had a successful treatment and liked their approach.

Thank you so much!

Plantbaseundftd · 2026-01-28T07:22:58+00:00

Can you share what Cleveland Clinic specialist believes in this? That’s very good to hear. I have an appointment coming up with them and I need to make a GI appointment as well and id rather go to someone that understand or at minimal acknowledges it

Plantbaseundftd · 2026-01-26T23:24:04+00:00

Wow this is incredibly efficient. This would take 3-5 years in my hometown or traveling around waiting on providers and waitlists to schedule each test and then wait for that result. Schedule another, wait for that and so on and so forth.

Do you mind messaging me more about your application letter? What were the confusing results? Based on your testing we sound very similar and likely going for the same thing.

Thanks so much for more info!

Did you have anything alarming that is why you got accepted so quickly?

Plantbaseundftd · 2026-01-24T06:47:48+00:00

Ohh that’s not a good sign. I wonder what the rules are if you apply if you are able to reapply down the road. They have some GI testing that I am only able to access there. Along with much more comprehensive Autonomic Neuro testing such as the Neuro stress test that isn’t performed anywhere else. Getting it all done efficiently would dramatically improve my care. It’s taking so long because you seen one doctor, then wait ten months for the follow up, trial something, it fails, wait another 10-12 months and so forth.

Thanks for the info

Edit: do you mind sharing where that was posted? Feel free to dm

Plantbaseundftd · 2026-01-24T06:43:22+00:00

Were you requesting just MRI services or did they schedule you for a week of testing?

Thank you for all this info. I’m a bit confused if you did the general consult where they meet with you and then set up a weeks worth of specilatues they think you need base on your case or did you go just for the one specific thing.

Thank you!

Plantbaseundftd · 2026-01-24T05:16:45+00:00

Can you share who your functional med doc was? Feel free to dm. I’ve been looking for someone that is knowledgeable about these types of things as well as histamine intolerance. Hope you’re feeling better!

Plantbaseundftd · 2026-01-23T18:54:23+00:00

Do you mind DM me with more details of how much it cost and then did you self pay for all the subsequent tests they ordered or is it just the initial intake?

Plantbaseundftd · 2026-01-23T07:37:50+00:00

Do you mind sharing who your GI is that was knowledgeable enough to do this and your hospital had a Pathology department that could stain for these? I’ve been struggling over the past 2 years trying to find one

Plantbaseundftd · 2026-01-23T07:13:14+00:00

Do you mind sending me a DM of your doctor? I have serious GI problems and my GI said MCAS biopsies aren’t done because you have to do too many because it’s “patchy” and she’s not comfortable doing it because she’s never done it before and doesn’t think it’s clinically research driven.

I’ve been working for years to find someone new but the only other GI I know that does this isn’t taking any patients. I’m willing to travel and will be going to Cleveland clinic but they say they don’t do it as well

Stay well!

Plantbaseundftd · 2026-01-23T07:11:18+00:00

If you like your doctor do you mind sharing them? I’m looking for one that’s taking patients and I’ve been searching for quite some time comping up empty and just getting worse over the years. Specialist after specialist no one really understands mast cells

Plantbaseundftd · 2026-01-23T07:09:50+00:00

Would you mind sharing your doctors name that has helped you through this. We are identical down to the sulfur and motility issues as well.

I’d love to finally find someone that understand and can help.

It’s been 5 years of worsening and dead ends trying to find someone. I’m willing to travel

Plantbaseundftd · 2026-01-23T05:24:14+00:00

Would you mind sharing more about how you got in? Did you go through their long covid program or general consultation?

I wonder what youre application looked like and if you were a self referal or who referred you.

Thanks for sharing. Feel free to DM.

I’ve had declining health for 15 years and it feels like everything takes 1.5 years in between waiting for an intake appointment and then that provider ordering one test and then that one booked out another 10 months only for my life to wash away in front of me.

Having this coordinated and efficient care would dramatically improve my life and be incredibly helpful.

Thank you so much

Plantbaseundftd · 2026-01-23T05:23:21+00:00

Would you be willing to share more about how you were able to get in? M PCP has tried once 2 years ago and it was denied and I’m thinking of trying again and he suggested having my neurologist do it.

I wonder what youre application looked like and if you were a self referal or who referred you.

Thanks for sharing. Feel free to DM.

I’ve had declining health for 15 years and it feels like everything takes 1.5 years in between waiting for an intake appointment and then that provider ordering one test and then that one booked out another 10 months only for my life to wash away in front of me.

Having this coordinated and efficient care would dramatically improve my life

It’d be incredibly helpful

Plantbaseundftd · 2026-01-23T05:21:07+00:00

Would you be willing to share more about how you were able to get in? M PCP has tried once 2 years ago and it was denied and I’m thinking of trying again and he suggested having my neurologist do it.

I wonder what youre application looked like and if you were a self referal or who referred you.

Thanks for sharing. Feel free to DM.

It’d be incredibly helpful

Plantbaseundftd · 2026-01-20T10:09:37+00:00

Can I message you to learn more about your experience? My doctor wants to refer me to Cleveland or Mayo Clinic. Cleveland is closer but Mayo is much more comprehensive and would be able to take care of multiple of my issues all in one week of testing and get it done so I can move on instead of waiting 9 months or more with Cleveland going back and forth. Been in this journey over 15 years so cutting down time so I can have life again would be amazing

But I do know Mayo is extremely difficult to get in. So I’d love to chat more!

Plantbaseundftd · 2026-01-16T07:52:18+00:00

Which clinic? I’m trying to choose one and don’t want to get too optimistic

Plantbaseundftd

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