1. < Autoimmune Diseases

What testing should I look forward to be properly tested for MCAS

Posted by lidiana @lidiana, Nov 4, 2022

Hello 👋🏻

I’m still here by the grace and mercy of my God 🙏🏻 I’m trying to understand and to target possible commodity with my current diagnosis (POTS and HSD). I have this symptoms related to MCAS but I haven’t been able to get properly tested. What was your experience getting tested and diagnosed? What specialist test this?

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frenchie333 | @frenchie333 | Nov 22, 2022
In reply to @frenchie333 "O. M. G.!!!!! Did the fried rice have the usual soy sauce and eggs? I could..." + (show)
@frenchie333

O. M. G.!!!!! Did the fried rice have the usual soy sauce and eggs? I could be wrong but I thought soy sauce was high histamine. And, indeed, some spices are high histamine, too. And your chart showed eggs as an allergen.

Many websites will list high versus low histamine foods. You may already know this but, if not, you may want to check out the highly regarded SIGHI list. I've forgotten what that acronym stands for but it's Swiss something-or-other.

Me? I think you know me well enough to discern I'm not smug, not bragging. Soooooo deeply grateful for DAO enzyme, my diet being expanded to include everything and anything without mast cell reactions, gaining back the weight I lost. Yep, all due to DAO Enzyme. When I share with friends, family and strangers I help them remember by pointing upwards and saying Divine Authority Overhead. DAO! For me, a lifesaver! Perhaps literally.

You have got a serious problem. Alarming!

If you seek out DAO enzyme, it might not even be mentioned on the label. It's desiccated beef or pork kidney. There are many brands on Amazon.com. I opted for the Beef Kidney and take two capsules three times per day. I take them with meals but it wouldn't be a bad idea to take those capsules half an hour before each meal.

I am seriously concerned for you! Oh, have yet to check your allergen chart. Will do that next.

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Just checked your chart to the best of my ability. Even enlarged the print was small but I thought I saw eggs as a problematic food. And, being part Chinese, I know many versions of fried rice include egg.

I tried the very restricted, low histamine diet but it was not 100% effective for me. Yes, I improved but had to keep seeing what new, supposedly-low-histamine item I was reacting to. Case in point? Chicken broth. Well, everyone knows bone broth is super healthy, a source of collagen. But... bone broth is high histamine. So, I had to switch to regular chicken broth when making my borrrrring chicken soup.

It's like walking a tight rope.

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sommerreign | @sommerreign | Nov 23, 2022
In reply to @colleenyoung "Good question, @lidiana. I'm tagging fellow members who have experience with diagnostic testing for Mast Cell..." + (show)
@colleenyoung

Good question, @lidiana. I'm tagging fellow members who have experience with diagnostic testing for Mast Cell Activation Syndrome (MCAS) like @rhawk314 @hsminc @frenchie333 @juy77 @kurtg @sommerreign @bluecow @teedlum to join this conversation and share the diagnostic testing they had.

Here are further related discussions:
– Mast Cell Activation Syndrome: What treatments help you? https://connect.mayoclinic.org/discussion/mast-cell-activation-syndrome/
– Mast Cell Activation: https://connect.mayoclinic.org/discussion/mast-cell-activation/

What diagnostic testing have you had, Lidiana?

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What can I do to help my daughter? Just soy fines from a restaurant causes red cheeks & chest, is this typical?

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1 reply
moylandavis | @moylandavis | Nov 24, 2022
In reply to @sommerreign "What can I do to help my daughter? Just soy fines from a restaurant causes red..." + (show)
@sommerreign

What can I do to help my daughter? Just soy fines from a restaurant causes red cheeks & chest, is this typical?

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Eating at restaurants is problematic due to poor food handling in many restaurants. Bacteria in food is a major trigger for me. If the food is not cooked and then stored properly, it can cause a MCAS flare.

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TSB | @terrirussell | Nov 24, 2022

I have MCAS and there is no test available sadly. I learned to follow Naturopaths Esp Dr Beth OHara and Dr Becky Campbell. I learned, and continue to learn, so much from them. I did see medical doctors but they are ill informed on this as it is principally diet driven. Each person has a different end result but the process these sites can help you establish your diet. I used Becky Campbells Optimal Reset supplement as the necessary ones are overwhelming and she provides a set to take that work for me. Oddly, the only foods that healed me were the Carnivore program as I’m O+ blood, meat eaters! BBBE. Beef Bacon Butter Eggs. 24/7. Totally healed me and then I slowly introduced one item at a time. This is a constant process. Absolutely nothing processed! It’s a new world!!!

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1 reply
lidiana | @lidiana | Jan 16, 2023

@colleenyoung please help if this is not the place for this post please help cuz I already tried to post it under Lung Health. Thanks again.

Pulmonary Hypertension and Pectus Excavatum:

I’m seeing a thoracic surgeon about the resent issue with my lungs and hear. Here’s what’s going on in the picture of the reports. 😞 I dunno what to do I just hope it’s not linked with malignancy since my laparoscopy study came with some unexpected results of the pathology. More in the pics.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 17, 2023

Lidiana, I removed the images to protect your privacy and security since the reports contained personal information including your patient ID number.

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kjridenhour | @kjridenhour | Sep 3, 2023
In reply to @terrirussell "I have MCAS and there is no test available sadly. I learned to follow Naturopaths Esp..." + (show)
@terrirussell

I have MCAS and there is no test available sadly. I learned to follow Naturopaths Esp Dr Beth OHara and Dr Becky Campbell. I learned, and continue to learn, so much from them. I did see medical doctors but they are ill informed on this as it is principally diet driven. Each person has a different end result but the process these sites can help you establish your diet. I used Becky Campbells Optimal Reset supplement as the necessary ones are overwhelming and she provides a set to take that work for me. Oddly, the only foods that healed me were the Carnivore program as I’m O+ blood, meat eaters! BBBE. Beef Bacon Butter Eggs. 24/7. Totally healed me and then I slowly introduced one item at a time. This is a constant process. Absolutely nothing processed! It’s a new world!!!

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I’m interested in your experience. Reading O’Hara and Campbell now. Also thinking about carnivore to get things started but a little worried about oxalate dumping. Tried carnivore once before, and I think I had that issue. How long did you do Carnivore before reintroducing things? Did you do the Optimal Reset supplements with the carnivore? Thanks for anything you share.

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