The insect sting 🐝 connection is very interesting. I’ve only ever been allergic to bee stings and now later in life dealing with some form of MCAS. Fully body pins and needles, gi burning and neurological impairment during inflammation flares. Luckily I respond well to Pepcid, ketotifin and Sodium Cromolyn.
I have been having dermatographia my whole life. My mom just told me “you have sensitive skin”. Later in life I would still breakout in red raised welts and my entire body would itch but there weren’t any rash to itch just my body itched. I found out I was severely gluten intolerant. I’ve had chronic constipation my whole life and gluten makes me disabled (can’t walk, can’t speak. Neurological symptoms are my main symptoms but my gluten intolerance causes many symptoms. I know when my histamine is high by how my skin turns red and flushes or welting. If I take anti-histamine my symptoms eases up - huge relief. I ran out of quercertin and I am feeling it. Now I’m thinking I can’t run out of it and I’m going to get me some nettle. I cut gluten out this year and my most severe symptoms are gone but this histamine intolerance and MCAS is active. I had some high histamine foods a week ago and I really am coming out of denial of the fact that I can eat it, I can’t eat high histamine foods otherwise I feel like crap, weird
This is all so incredibly confusing. Thr vast majority of medical practices in the US would have no clue where to begin. And insurers would balk at most of the suggested tests.
I wish I could hear more insight on HaT. My tryptase is between 14-17 but I am negative for the c-kit gene. I have a lot of head/neck/face pain, GI problems, food allergies and intolerances and I think I'm reacting to my own estrogen.
Does dysautonomic symptoms correlate MCAS? My son has had Kounis type anaphylaxis and has multiple dysautonomic episodes. He reacts to sunlight. These have improved with mast cell blockade.
Thank you so much. I can’t find. A doctor who can help me. I live in the tri state area. I tried to see you. I can’t get an appointment. I’m suffering. Can you suggest where I can get help???
Currently have extremely swollen lips, like comically bad lip injections...... again. For no apparent reason.. again. My eyes swell shut, get hives for months on end, random rashes. Developed a mango allergy or of nowhere. Only figured it out after months of severe blisters on my lips. Saw a derm, they didn't have any clue what was happening, thought it was an infection. I once got a SEVERE reaction to iodine post-op, but have NEVER had a reaction to it since. Sometimes get itchy from pressure from things like my underwear. The list goes on and sometimes I can tell a cause, but not usually. Gets worse when I'm stressed or my immune system is down. Had allergy testing when I was little thanks to numerous symptoms. 0 allergies found. None. But that doctor didn't try to look further. Well, it's gotten worse and now I need one to look further. Tried to tell a doctor all this and he laughed and said stress doesn't cause rashes, there has never been a case of that and that was the end of my weird allergy symptoms discussion😒 so frustrating. I suggested EDS to my rheumatologist 3 years before finally getting diagnosed thanks to a bad fall. He just laughed when I suggested and said that was highly unlikely. "Highly unlikely" is something I'm getting real sick of hearing. Heard it in relation to my endometriosis too. Have some horror stories there. Don't be put off by doctors who think inside the box. If you're a zebra, own it. Don't let them push you around. Fight for yourself. I've had to fight with my insurance many times. Don't be afraid to find a new doctor either, one that gets excited by zebras rather than refusing to believe you are one because that would be highly unlikely. Get one that will help fight for you. Tell them the trouble you are having. You might think it's brazen to ask a doctor to help fight for you, but sometimes other doctors or insurance companies will only listen to a doctor. I hope you find the right doctor. In the meantime I did find a nutritionist working out of freehold nj that specializes in EDS and MCAS. She is registered with some kind of eds foundation, forget which one. Maybe she can help. Looking into going myself. She only does online appointments. Have to find her name again, but it's at least one resource.
The insect sting 🐝 connection is very interesting. I’ve only ever been allergic to bee stings and now later in life dealing with some form of MCAS. Fully body pins and needles, gi burning and neurological impairment during inflammation flares. Luckily I respond well to Pepcid, ketotifin and Sodium Cromolyn.
I have been having dermatographia my whole life. My mom just told me “you have sensitive skin”. Later in life I would still breakout in red raised welts and my entire body would itch but there weren’t any rash to itch just my body itched. I found out I was severely gluten intolerant. I’ve had chronic constipation my whole life and gluten makes me disabled (can’t walk, can’t speak. Neurological symptoms are my main symptoms but my gluten intolerance causes many symptoms. I know when my histamine is high by how my skin turns red and flushes or welting. If I take anti-histamine my symptoms eases up - huge relief. I ran out of quercertin and I am feeling it. Now I’m thinking I can’t run out of it and I’m going to get me some nettle. I cut gluten out this year and my most severe symptoms are gone but this histamine intolerance and MCAS is active. I had some high histamine foods a week ago and I really am coming out of denial of the fact that I can eat it, I can’t eat high histamine foods otherwise I feel like crap, weird
How do I join a study?
Absolutely brilliant- thank you so much EDS
Chymase is the missing link for me, thanks Dr Anne!
Please consider high oxalate foods as an activator! Sally K Norton has an amazing book called "Toxic Superfoods" !
This is all so incredibly confusing. Thr vast majority of medical practices in the US would have no clue where to begin. And insurers would balk at most of the suggested tests.
The UK nhs just doesnt treat you unless you have elevated ige and wont even entertain mcas being a thing
I wish I could hear more insight on HaT. My tryptase is between 14-17 but I am negative for the c-kit gene. I have a lot of head/neck/face pain, GI problems, food allergies and intolerances and I think I'm reacting to my own estrogen.
Does dysautonomic symptoms correlate MCAS? My son has had Kounis type anaphylaxis and has multiple dysautonomic episodes. He reacts to sunlight. These have improved with mast cell blockade.
Thank you so much. I can’t find. A doctor who can help me. I live in the tri state area. I tried to see you. I can’t get an appointment. I’m suffering. Can you suggest where I can get help???
Currently have extremely swollen lips, like comically bad lip injections...... again. For no apparent reason.. again. My eyes swell shut, get hives for months on end, random rashes. Developed a mango allergy or of nowhere. Only figured it out after months of severe blisters on my lips. Saw a derm, they didn't have any clue what was happening, thought it was an infection. I once got a SEVERE reaction to iodine post-op, but have NEVER had a reaction to it since. Sometimes get itchy from pressure from things like my underwear. The list goes on and sometimes I can tell a cause, but not usually. Gets worse when I'm stressed or my immune system is down. Had allergy testing when I was little thanks to numerous symptoms. 0 allergies found. None. But that doctor didn't try to look further. Well, it's gotten worse and now I need one to look further. Tried to tell a doctor all this and he laughed and said stress doesn't cause rashes, there has never been a case of that and that was the end of my weird allergy symptoms discussion😒 so frustrating. I suggested EDS to my rheumatologist 3 years before finally getting diagnosed thanks to a bad fall. He just laughed when I suggested and said that was highly unlikely. "Highly unlikely" is something I'm getting real sick of hearing. Heard it in relation to my endometriosis too. Have some horror stories there.
Don't be put off by doctors who think inside the box. If you're a zebra, own it. Don't let them push you around. Fight for yourself. I've had to fight with my insurance many times. Don't be afraid to find a new doctor either, one that gets excited by zebras rather than refusing to believe you are one because that would be highly unlikely. Get one that will help fight for you. Tell them the trouble you are having. You might think it's brazen to ask a doctor to help fight for you, but sometimes other doctors or insurance companies will only listen to a doctor.
I hope you find the right doctor. In the meantime I did find a nutritionist working out of freehold nj that specializes in EDS and MCAS. She is registered with some kind of eds foundation, forget which one. Maybe she can help. Looking into going myself. She only does online appointments. Have to find her name again, but it's at least one resource.
Debra, if you wish I can help you through modulating your food and identifying the triggers.
Contact me via email idantas at gmx.de
Where does Histamine intolerance fall into this?
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