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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I don’t understand your breakdown the medical terminology. I know I have the jak2 gene and monoclonal protein spike. I suffer from hives actual welts and angioedema. It was finally under control with xolair injections to stop the histamine attacks..now I have them again after having my thyroid removed which was benign. So I’m on prednisone which sucks. Hopefully the xolair injection I received today will help.
Maybe ask your doctor about xolair it’s a biological.

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Google “mast cell activation primer for gastroenterologist”
It is a guide on MCAS written by some of the top doctors in the US…it is a step by step guide to testing and symptoms as well as treatments…share it with your doctors…

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I also have high histamine in my body. Had 18” of my colon removed in April of 2022 for severe diverticulitis and since then have been diagnosed with Hashimoto’s/Hypothyroidism in November of 2022. Taking 112 of Synthroid and 5 of Cytomel. I also break out in itchy hives and had an allergist do a food sensitivity test on me and to my surprise, I am allergic to many foods. I’ve been staying away from these foods and do feel better. The first 3 foods you can eliminate are gluten, dairy and soy. I would try doing that and see if you notice a difference in your hives and the way you feel. I’m sorry you’ve suffered for so long, but I’m hoping those 3 food eliminations will help you. I would also have my Thyroid checked. You can have a blood test done and have your TSH, T3 Free, T4 Free and your thyroid antibodies tested for hypo or hyperthyroidism. I hope this helps and you feel better soon!

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Not sure about the conditions you mentioned but my daughter suffered from food allergies for 24 years. We found out she had Chronic Spontaneous Urticaria which was controlled by antihistamines. Xolair was also mentioned as a treatment but not needed.

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Try Google Scholar. There is a wellspring of information on there. Also, have you tried the Integrative Medicine Doctor route? Hugs & Prayers to you.

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I have all that you have and went down for 7 months w lesion like boils? All over my face every time I ate the wrong thing. I gave up on all the protocols and went on the Carnivore Diet…..within 12 hrs my face began the healing process and within 48 hrs I was feeling better…..not so flu like……I am 5 months out now and I have no lesions at all and am living a normal life unless I go off of it. Eggs Beef most meats, poultry, salt, butter, super sharp cheese ,Quaker rice cakes. water w monk fruit, SyFo seltzer …..anything past that is a test I don’t want to take. Mine was caused by the covid shots esp the last booster. Blew me away. There is an huge army of people who have healed on Carnivore……what have you got to lose?…..oh yeah and I lost about 25 lbs!

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@lkirnbauer

I also have high histamine in my body. Had 18” of my colon removed in April of 2022 for severe diverticulitis and since then have been diagnosed with Hashimoto’s/Hypothyroidism in November of 2022. Taking 112 of Synthroid and 5 of Cytomel. I also break out in itchy hives and had an allergist do a food sensitivity test on me and to my surprise, I am allergic to many foods. I’ve been staying away from these foods and do feel better. The first 3 foods you can eliminate are gluten, dairy and soy. I would try doing that and see if you notice a difference in your hives and the way you feel. I’m sorry you’ve suffered for so long, but I’m hoping those 3 food eliminations will help you. I would also have my Thyroid checked. You can have a blood test done and have your TSH, T3 Free, T4 Free and your thyroid antibodies tested for hypo or hyperthyroidism. I hope this helps and you feel better soon!

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Hi and ty for your response. I don’t have allergies to foods and chemicals but I do have intolerances to so many. All my blood work comes back normal.

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@nialab

Not sure about the conditions you mentioned but my daughter suffered from food allergies for 24 years. We found out she had Chronic Spontaneous Urticaria which was controlled by antihistamines. Xolair was also mentioned as a treatment but not needed.

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Hi. I don’t suffer from food allergies but intolerances and intolerances to chemicals. They all make me very sick.

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@dixzeland everything sounds so confusing for you! Have you tried any of the comprehensive medical centers or university hospitals? They might be your best bet. Just google ‘comprehensive medical center in……’. The doctors there do quite a bit of research and might be more knowledgeable.
Or have you thought about going to Mayo Clinic? Here is the specific link: https://mayocl.in/1mtmR63
Keep me posted!

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@becsbuddy

@dixzeland everything sounds so confusing for you! Have you tried any of the comprehensive medical centers or university hospitals? They might be your best bet. Just google ‘comprehensive medical center in……’. The doctors there do quite a bit of research and might be more knowledgeable.
Or have you thought about going to Mayo Clinic? Here is the specific link: https://mayocl.in/1mtmR63
Keep me posted!

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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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