Thank you for answering my antihistamine questions! I take dye free (generic) Benadryl several nights a week the last several months due to itching and other issues and my PFPT was really upset with me and kept warning me to stop taking it - almost condescendingly so. I asked my doctor about it and he said he knows there have been some articles about the blood/brain barrier, etc, but he also said it could help my MCAS symptoms, so I’ve been feeling guilty but hoping I’m not doing more damage with every dose. I also started using Pepcid with at least one meal a day recently, and am awaiting a consult with an allergist familiar with hypermobility, so hoping to get a lot more help getting my mast cells under control. This was a question I’d been searching for an explanation and answer on for at least a few months now. Thanks again 😅
I get horrible joint pain if I try to eat most foods. Like fruits + veggies. So I keep my hEDS joints good by mainly eating a grass fed meat based diet with a little organic fruit I am ok with. But most foods I react to.. I do have to avoid all grains. Have celiac and the celiac gene.. Went grain free in July 2019. I have a corn allergy as well and react to all derivitives. And that is a bigger problem than the celiac - wheat thing. As corn is hidden in so many things, including nonfood. And I react to cooking smells too (I will often react to that Qdoba place from across the street just from fumes). Cannot tolerate plastic. Had that issue for years. I shiver at 69 F. And I love the heat! 100 F heat index to me feels like a very pleasant 80 F. Unfortunately this is a cold climate I live in. I know what many of my triggers are: grain, hidden corn, manmade scents, people cooking food, stuff like scent from hand sanitizer candles air freshner etc, ink odor, chemicals. Loud sounds will trigger my anxiety bad or loud annoying music or high pitch sounds. And if I am anxious that can make me more likely to react than to the MCAS triggers. I have the skin writing that lasts 20 minutes.. Plus the smells can trigger the Pots. Normally I am not Potsy. The smells - like air freshener - will give me brain fog. Otherwise I have an incredible memory. Eating allergens can do that too but at the moment since my diet is so limited its the smells that mainly trigger it. Cannot take antihistamines from store as all contain corn. Natural flavors. PluscI have to avoid many other "harmless" foods too like bananas. Long list of foods. Try to eat an organic banana and right after the ear ringing starts up and I get joint pain plus just 1 banana will make me horribly constipated! Uggh. I guess its too much "fiber". It seems to give me gastroperisis? I also avoid lectins, nightshades + oxalates. I am a LMHR. Metabolically healthy at 52. My resting heart rate is 55 and at night it goes into the upper 40s. Doing that celiac test where you eat that wheat on purpose really goofed up my vagus nerve. Plus I have C-PTSD. Oddly enough never had that C19.. Dont know why people catch it so much? I do avoid crowds ( due to the overwhealming perfume laundry detergent etc) but I do ride weekly in taxis with all strange drivers so its not like I avoid people. I do feel my mast cells are "trigger happy" always looking for these "bad smells" like that smell in the library ( which I cannot go anymore as my eyes start burning in 2 minutes in the building and then I start itching and if I stay I get breathing issues) or fumes from those restaurants. I dont know if that is in part why I never caught it??? No idea. Of course I didnt take any " inocculation" if you know what I mean. Being able to only tolerate a few foods I dont dare take it. There is like 0 over the counter meds I can take, unless you count ACV as a "med". And yes I react to white vinegar too! Did you ever look at the website of Corn Allergy Girl? She also has hEDS and MCAS. Its very eye opening. Cant use any spices as they too are contaminated with corn. If I try a simple herb mix of green dried leaves I end up reacting. 😐 Been eating more beef liver + eggs lately. I just got eggs back into my diet just before Christmas. Before that I was egg free for 2 years. The eggs + liver stopped my hair from falling out. And the doctors... They really dont help. My previous PCP told me that it was all in my head and that if I would go on a med from a shrink all of my food issues would magically go away. I was trying to tell her I had EDS but of course she couldnt see what that had to do with gut issues. Basically she said I was making it all up and there was no connection between joints and the gut. So she sent me to see her doctor "friend" to find out if I was lying to her. The friend was a more natural type doctor as well as a MD and she knew right away I had EDS + MCAS... And then right after that I was diagnosed with EDS.. But these doctors dont understand this stuff. It really bugs them that you dont eat those veggies even though by eating them you will get blocked for 5 or 6 days plus your knee joints will be so bad you cannot walk! But that is how those doctors are. And they sure dont understand the LMHR either. That saturated fat is the thing fixing my joints so I can walk!! Plus cholesterol is the "mother harmone" i have heard. If you have never heard of the LMHR phenotype go look up Dave Feldman... But I am sure you know all about it. And yes years ago I had mold exposure. For years. From trying to clean the basement. Was trying to do the "right thing" and clean my grandmother's mess. I had no idea about mold or abything. And yes it was very wet down there. Stuff rotted away... Had many moisture issues. But you get clobbered for trying to do the right thing.
Oh no! I am so sorry you are dealing with all of that! Thank you for sharing about Corn Allergy Girl as her website looks very interesting. Do you know her name? I don't see it on the site anywhere.
What about a treatment of high dose NAC that is discussed on other channels? Is this a general good overall 'therapy' that would be good in general (like LDN)....but because NAC is OTC until someone finds a prescribing dr.
I personally take NAC and prescribe it to selected patients. I rarely discuss specific supplements or dosing on the podcast because there are so many variables to consider. Make sure you are signed up for the newsletter though as this is something I am thinking of offering classes for in the future.
@bendybodiespodcast the validation & the education. I'm putting more puzzle pieces together. I have histamine intolerance & may have MCAS...& the evil triad (EDS, MCAS & POTS...maybe even Lyme?) It made me think of my own histamine triggers. The point that you have to figure out the root cause. It's the chicken or the egg scenario. What's triggering what. It's a bit discouraging & and overwhelming, but it makes sense. I know I can't just hope it's a virus or mold and assume all my issues will disappear. I also chewing on the carnivore diet. (Pun intended...lol) I'm not a big fan of meat but eat it. I'm trying to eat more protein (meat, nuts & seeds), then good fats, & smaller amount of carbs but you have to be careful not to eat high histamine foods at the same time. Its a hard thing to juggle. It's really nice to know my symptoms aren't in my head and there are doctors who can help you figure it out ❤️
@@louiseyoung1231 thank you so much for sharing all of that. You may notice that Dr Dempsey is a fan of the carnivore diet, whereas Dr Ruhoy is a fan of vegan diets. It is really important for each person to do what works for them. Have you watched the episode about our triad documentary?
@bendybodiespodcast thank you. I tried vegan & it made me worse in some ways. I have the MTHFR gene that's turned on, and veganism made me really deficit. Some of the foods triggered histamine reaction & my food sensitivities. I agree. It's not a one size fits all. I did hear the triad one and again got overwhelmed about the mold protocol. It's a lot! I'll listen again though because I know it will help ❤️
Linda, I don't see the diagnosis paper linked in the description. I know you linked your other episodes ...where you might have linked it....but since the 'bandwidth' of ppl with mcas..gives them a certain attention span...being able to see the paper's direct link would be really helpful. If others are like me who go off on other tangents or down rabbit holes....not knowing how or why I got where I ended up....ensures they miss the answer to their main question...like diagnosis criteria paper by Bluestein and Demsey. I also didnt see the Moulderings and Dempsey paper link about learned perceptions that she recommended that ppl read. You mentioned you would link in description. I could have missed them. Is there another place you are putting the references? Someone on another channel used the community tab in YT for the research article references, contact info of guests, etc...instead of leading ppl to fb or a different webpage. Just a thought.
Thank you so much for that feedback and I will add them now. The RUclips caption has limited characters and sometimes I run out of room. I am honestly not sure what you mean by the community page. Can you elaborate?
Thank you for answering my antihistamine questions! I take dye free (generic) Benadryl several nights a week the last several months due to itching and other issues and my PFPT was really upset with me and kept warning me to stop taking it - almost condescendingly so. I asked my doctor about it and he said he knows there have been some articles about the blood/brain barrier, etc, but he also said it could help my MCAS symptoms, so I’ve been feeling guilty but hoping I’m not doing more damage with every dose. I also started using Pepcid with at least one meal a day recently, and am awaiting a consult with an allergist familiar with hypermobility, so hoping to get a lot more help getting my mast cells under control. This was a question I’d been searching for an explanation and answer on for at least a few months now. Thanks again 😅
You are most welcome and please keep me posted!
I get horrible joint pain if I try to eat most foods. Like fruits + veggies. So I keep my hEDS joints good by mainly eating a grass fed meat based diet with a little organic fruit I am ok with. But most foods I react to.. I do have to avoid all grains. Have celiac and the celiac gene.. Went grain free in July 2019.
I have a corn allergy as well and react to all derivitives. And that is a bigger problem than the celiac - wheat thing. As corn is hidden in so many things, including nonfood. And I react to cooking smells too (I will often react to that Qdoba place from across the street just from fumes).
Cannot tolerate plastic. Had that issue for years.
I shiver at 69 F. And I love the heat! 100 F heat index to me feels like a very pleasant 80 F. Unfortunately this is a cold climate I live in.
I know what many of my triggers are: grain, hidden corn, manmade scents, people cooking food, stuff like scent from hand sanitizer candles air freshner etc, ink odor, chemicals. Loud sounds will trigger my anxiety bad or loud annoying music or high pitch sounds. And if I am anxious that can make me more likely to react than to the MCAS triggers.
I have the skin writing that lasts 20 minutes.. Plus the smells can trigger the Pots. Normally I am not Potsy.
The smells - like air freshener - will give me brain fog. Otherwise I have an incredible memory. Eating allergens can do that too but at the moment since my diet is so limited its the smells that mainly trigger it.
Cannot take antihistamines from store as all contain corn. Natural flavors. PluscI have to avoid many other "harmless" foods too like bananas. Long list of foods. Try to eat an organic banana and right after the ear ringing starts up and I get joint pain plus just 1 banana will make me horribly constipated! Uggh. I guess its too much "fiber". It seems to give me gastroperisis? I also avoid lectins, nightshades + oxalates.
I am a LMHR.
Metabolically healthy at 52. My resting heart rate is 55 and at night it goes into the upper 40s.
Doing that celiac test where you eat that wheat on purpose really goofed up my vagus nerve. Plus I have C-PTSD.
Oddly enough never had that C19.. Dont know why people catch it so much? I do avoid crowds ( due to the overwhealming perfume laundry detergent etc) but I do ride weekly in taxis with all strange drivers so its not like I avoid people. I do feel my mast cells are "trigger happy" always looking for these "bad smells" like that smell in the library ( which I cannot go anymore as my eyes start burning in 2 minutes in the building and then I start itching and if I stay I get breathing issues) or fumes from those restaurants. I dont know if that is in part why I never caught it??? No idea. Of course I didnt take any " inocculation" if you know what I mean. Being able to only tolerate a few foods I dont dare take it. There is like 0 over the counter meds I can take, unless you count ACV as a "med". And yes I react to white vinegar too!
Did you ever look at the website of Corn Allergy Girl? She also has hEDS and MCAS. Its very eye opening.
Cant use any spices as they too are contaminated with corn. If I try a simple herb mix of green dried leaves I end up reacting. 😐
Been eating more beef liver + eggs lately. I just got eggs back into my diet just before Christmas. Before that I was egg free for 2 years. The eggs + liver stopped my hair from falling out.
And the doctors... They really dont help. My previous PCP told me that it was all in my head and that if I would go on a med from a shrink all of my food issues would magically go away. I was trying to tell her I had EDS but of course she couldnt see what that had to do with gut issues. Basically she said I was making it all up and there was no connection between joints and the gut. So she sent me to see her doctor "friend" to find out if I was lying to her. The friend was a more natural type doctor as well as a MD and she knew right away I had EDS + MCAS... And then right after that I was diagnosed with EDS.. But these doctors dont understand this stuff. It really bugs them that you dont eat those veggies even though by eating them you will get blocked for 5 or 6 days plus your knee joints will be so bad you cannot walk! But that is how those doctors are.
And they sure dont understand the LMHR either. That saturated fat is the thing fixing my joints so I can walk!! Plus cholesterol is the "mother harmone" i have heard. If you have never heard of the LMHR phenotype go look up Dave Feldman... But I am sure you know all about it.
And yes years ago I had mold exposure. For years. From trying to clean the basement. Was trying to do the "right thing" and clean my grandmother's mess. I had no idea about mold or abything. And yes it was very wet down there. Stuff rotted away... Had many moisture issues. But you get clobbered for trying to do the right thing.
Oh no! I am so sorry you are dealing with all of that! Thank you for sharing about Corn Allergy Girl as her website looks very interesting. Do you know her name? I don't see it on the site anywhere.
What about a treatment of high dose NAC that is discussed on other channels? Is this a general good overall 'therapy' that would be good in general (like LDN)....but because NAC is OTC until someone finds a prescribing dr.
It was a great privilege to know Dr Abiola on RUclips, he cure me permanently from Herpes with his herbal medicine #drabiola ☺️❤…😊😊
I personally take NAC and prescribe it to selected patients. I rarely discuss specific supplements or dosing on the podcast because there are so many variables to consider. Make sure you are signed up for the newsletter though as this is something I am thinking of offering classes for in the future.
Thank you 💜
This was helpful and informative
I am so glad. What did you find most helpful?
@bendybodiespodcast the validation & the education. I'm putting more puzzle pieces together.
I have histamine intolerance & may have MCAS...& the evil triad (EDS, MCAS & POTS...maybe even Lyme?)
It made me think of my own histamine triggers. The point that you have to figure out the root cause. It's the chicken or the egg scenario. What's triggering what. It's a bit discouraging & and overwhelming, but it makes sense. I know I can't just hope it's a virus or mold and assume all my issues will disappear.
I also chewing on the carnivore diet. (Pun intended...lol) I'm not a big fan of meat but eat it.
I'm trying to eat more protein (meat, nuts & seeds), then good fats, & smaller amount of carbs but you have to be careful not to eat high histamine foods at the same time. Its a hard thing to juggle. It's really nice to know my symptoms aren't in my head and there are doctors who can help you figure it out ❤️
@@louiseyoung1231 thank you so much for sharing all of that. You may notice that Dr Dempsey is a fan of the carnivore diet, whereas Dr Ruhoy is a fan of vegan diets. It is really important for each person to do what works for them. Have you watched the episode about our triad documentary?
@bendybodiespodcast thank you. I tried vegan & it made me worse in some ways. I have the MTHFR gene that's turned on, and veganism made me really deficit. Some of the foods triggered histamine reaction & my food sensitivities. I agree. It's not a one size fits all. I did hear the triad one and again got overwhelmed about the mold protocol. It's a lot! I'll listen again though because I know it will help ❤️
@@louiseyoung1231 it is very hard to juggle so you are not alone!🧠👀🧬
Linda, I don't see the diagnosis paper linked in the description. I know you linked your other episodes ...where you might have linked it....but since the 'bandwidth' of ppl with mcas..gives them a certain attention span...being able to see the paper's direct link would be really helpful. If others are like me who go off on other tangents or down rabbit holes....not knowing how or why I got where I ended up....ensures they miss the answer to their main question...like diagnosis criteria paper by Bluestein and Demsey. I also didnt see the Moulderings and Dempsey paper link about learned perceptions that she recommended that ppl read. You mentioned you would link in description. I could have missed them. Is there another place you are putting the references? Someone on another channel used the community tab in YT for the research article references, contact info of guests, etc...instead of leading ppl to fb or a different webpage. Just a thought.
Thank you so much for that feedback and I will add them now. The RUclips caption has limited characters and sometimes I run out of room.
I am honestly not sure what you mean by the community page. Can you elaborate?
I just added them. As I suspected, I had to remove some other text. Eager to see how the community tab works.
cci from car accidents and a fall 17 feet. Atlas orthogonol DC.
It feels weird to "like"this. What a horrible accident and I am glad you are doing better!
@@bendybodiespodcast Love atlas orthgonogol dc for cervical. regular adjustments dc and friends. very very well maintained.