1. < Autoimmune Diseases

Histamine Intolerance the same as MCAS?

Posted by dixzeland @dixzeland, Nov 15, 2023

Hello all. I am wondering if histamine intolerance and Mast Cell disease is the same? I have my raw DNA that indicates I have a deficiency in rs1050891, rs2052129, rs10156191 and rs1049742. This involves brain histamine and gut histamine. I’ve been searching for a diagnosis for 14 years. 25+ doctors who can’t figure me out. I have so many debilitating symptoms including hives from time to time. Any help would be greatly appreciated.

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moylandavis | @moylandavis | Nov 18, 2023

Have you read the MCAS primer for gastroenterologist?
Have you compared the blood tests results you have vs the lab tests recommended in the guide? If there are missing test, consider asking your doctor to run the tests…
Sharing the guide with your doctor and working through the suggested steps really helped me get diagnosed. At this stage, you can work through this with a doctor who is willing to help, regardless of their knowledge of MCAS. Most MCAS specialists require you have started the process and have results that point to Mast Cell issues…

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2 replies
dixzeland | @dixzeland | Nov 18, 2023
In reply to @moylandavis "Have you read the MCAS primer for gastroenterologist? Have you compared the blood tests results you..." + (show)
@moylandavis

Have you read the MCAS primer for gastroenterologist?
Have you compared the blood tests results you have vs the lab tests recommended in the guide? If there are missing test, consider asking your doctor to run the tests…
Sharing the guide with your doctor and working through the suggested steps really helped me get diagnosed. At this stage, you can work through this with a doctor who is willing to help, regardless of their knowledge of MCAS. Most MCAS specialists require you have started the process and have results that point to Mast Cell issues…

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Hi. No I have not compared test as I didn’t know about them. I have seen 5 gastroenterologist and 3 allergist/immunologist over 14 years. Can you please tell me if Histamine intolerance and mCAS is the same? Every time I get blood work or 24 hour urine test I am not in a flare up. Shouldn’t the bloodwork or the 24 hour urine test be done when I’m in a huge flareup to get elevated numbers results?

REPLY
1 reply
dixzeland | @dixzeland | Nov 18, 2023
In reply to @moylandavis "Have you read the MCAS primer for gastroenterologist? Have you compared the blood tests results you..." + (show)
@moylandavis

Have you read the MCAS primer for gastroenterologist?
Have you compared the blood tests results you have vs the lab tests recommended in the guide? If there are missing test, consider asking your doctor to run the tests…
Sharing the guide with your doctor and working through the suggested steps really helped me get diagnosed. At this stage, you can work through this with a doctor who is willing to help, regardless of their knowledge of MCAS. Most MCAS specialists require you have started the process and have results that point to Mast Cell issues…

Jump to this post

Can you please send me the link for these labs as I’m not able to locate them. Thank you!

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2 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | Nov 18, 2023
In reply to @dixzeland "You are exactly right! I’m been told I’m a very complicated case indeed. I don’t have..." + (show)
@dixzeland

You are exactly right! I’m been told I’m a very complicated case indeed. I don’t have the money to go out of network nor the money to fly anywhere. Sad situation Becky. Ty for your reply.

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@dixzeland yes, you are in a tough situation. I’m so sorry. Have you spoken with the insurance company and explained why you have to go out-of-network? Ask one of the many doctors to help you by talking with insurance. And some of the other members may have ideas. But, please don’t lose hope

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1 reply
dixzeland | @dixzeland | Nov 18, 2023
In reply to @becsbuddy "@dixzeland yes, you are in a tough situation. I’m so sorry. Have you spoken with the..." + (show)
@becsbuddy

@dixzeland yes, you are in a tough situation. I’m so sorry. Have you spoken with the insurance company and explained why you have to go out-of-network? Ask one of the many doctors to help you by talking with insurance. And some of the other members may have ideas. But, please don’t lose hope

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I haven’t spoke with my insurance companies because I really don’t have the funds to travel. Ty for your kind words.

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moylandavis | @moylandavis | Nov 18, 2023
In reply to @dixzeland "Can you please send me the link for these labs as I’m not able to locate..." + (show)
@dixzeland

Can you please send me the link for these labs as I’m not able to locate them. Thank you!

Jump to this post

@dixzeland Google the Document "MCAS primer for gastroenterologist" and read it...it will answer a lot of your questions and give you a way forward...
Most People with Mast Cell Issues can have Histamine issues. Food intolerance is very common vs food allergies. Personally, I have issues with small amounts of bacteria in food.
Here is the link:
https://www.researchgate.net/publication/340872730_Mast_Cell_Activation_Syndrome_A_Primer_for_the_Gastroenterologist

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jeanette0 | @jeanette0 | Feb 17 5:26pm
In reply to @dixzeland "Hi. No I have not compared test as I didn’t know about them. I have seen..." + (show)
@dixzeland

Hi. No I have not compared test as I didn’t know about them. I have seen 5 gastroenterologist and 3 allergist/immunologist over 14 years. Can you please tell me if Histamine intolerance and mCAS is the same? Every time I get blood work or 24 hour urine test I am not in a flare up. Shouldn’t the bloodwork or the 24 hour urine test be done when I’m in a huge flareup to get elevated numbers results?

Jump to this post

Histamine Intolerance is a subset of MCAS. I have histamine intolerance and I am learning and researching a lot.

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Feb 17 6:20pm
In reply to @jeanette0 "Histamine Intolerance is a subset of MCAS. I have histamine intolerance and I am learning and..." + (show)
@jeanette0

Histamine Intolerance is a subset of MCAS. I have histamine intolerance and I am learning and researching a lot.

Jump to this post

@jeanette0 Thank you for joining Mayo Clinic Connect and answering a question so quickly! We’re really glad you’re here!

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