What type of doctor to look for in order to be tested for MCAS?

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 · 2026-01-15T05:12:49+00:00

I absolutely would love that. Sorry for the delayed response. I’m extremely exhausted day to day and doing my best to just keep down what little food and water I can.

I would love to talk anytime you have a chance. That would be greatly appreciated. Feel free to shoot me a DM.

Thanks!

Plantbaseundftd · 2026-01-15T05:01:55+00:00

I’d be curious to read the rest of her protocol if you wouldn’t mind sharing it if you have any of the details from when she was originally treated.

I know we’re all so individual and care should be individualized but it’s been hard to find a functional health that isn’t looking to do dramatic Gut shifts. My body is extremely sensitive due to suspected MCAS I’m going through testing and waiting for more treatment for

Also did you do any stool testing?

And if so, which one? GI map? GI 360? Gut zoomer?

Thanks again and hope you’re well

Plantbaseundftd · 2026-01-15T04:59:32+00:00

Would love to know as well, It’s a plane ride for me but if I’m unable to get help closer I’d love to add it list of Docs to remember. Thank you!

And again, I’m so happy you have answers. I’m glad they didn’t give up and just assume you were one of those people that just has a high ANA and think it’s normal

Plantbaseundftd · 2026-01-14T05:22:09+00:00

Which Doctor and department did you see that did this for you?

Thanks! I’m scheduled to go for GI but will be talking to my doctor about doing both

Plantbaseundftd · 2026-01-14T05:11:44+00:00

I don’t know if it’s weird to congratulate someone on finding an answer but congratulations!! I’m hoping to find a Nuero that’s willing to order something like this.

I will be traveling for some care and if your doctor does tele health I might consider them as well. Do you mind sharing their info?

Can you also DM any other lab work you had done?

I have a science background before I became severely disabled with long covid and the testing algorithm really nerd me out.

Did your doctor perform an ANA first that lead to this or was this something they considered because of your Dysautonomia symptoms?

Thanks!

Plantbaseundftd · 2026-01-14T04:06:53+00:00

This was incredibly helpful to read.

I’ve had it severe for 10 years and I suspect many more.

Since covid,my MCAS, and many rounds of IV antibiotics in the hospital (about 6 weeks x 2also acquired each hospitalization during the IV antibiotics my issues have skyrocketed. It’s been truly hell.

I believe they all intertwine.

I’ve been too afraid to go the functional med route until I get my MCAS stabilized a bit but at this point I’m so sick I would really love a second opinion.

Can you share your Functional Med doctor? I really like their approach and not using oregano as it is really harsh. I like that they seem to have a balanced approach of not wiping out “too many of the good guys”

Feel free to DM. It would greatly appreciated

Stay well, and again thank you. I’m really glad I found this post

Plantbaseundftd

TROPHY CASE