After giving up on regular doctor's because "your blood tests show no inflammation so you are fine"; a naturopath finally figured out what is going on with me. Thank you for sharing your story as I feel I have been through very similar things.
Thank you for sharing 💖 I feel so alone with mine, people don't realise how hard life is with MCAS. 🥺 But we must not give up and keep raising awareness 👩🏼⚖️💓
Omg, your story resonates with my experience. I am 69 years old and after having dysautonamia diagnosis from my cardiologist after falling and hitting my head, he said I have MCAS. Though the allergist said he doubts I have it yet says he believes something is wrong. He is old and I believe just needs to retire. I had tonsils out as a child, allergic (hives)to bee/wasp/ mosquito stings, asthma that has been severe ( prednisone for 2 years straight, IBS, SIBO, chronic debilitating migraine, vertigo, dysautonamis with low BP 90/60 is high for me, syncope, facial flushing, my body temp is unstable, unexplained muscle pain that comes on fairly quickly and leaves fairly quickly but makes me bedridden sometimes for days. Chronic sinusitis-sometimes severe, all of these symptoms come and go at their own will. I have no control. I also have ADHD. I have hyper mobile joints with ruptures discs, hips pop out of place and have muscle spasms. Drshate patients like us. Sometimes I hide that I am a retired ICU/ oncology/director of education with 35 years of experience just to see how my symptoms list affects the doctor. They hate patients like us, though some are very very good.
So I came across Kiara’s blog and was relating so much. I also have PMDD on top of EDS and mast cell activation syndrome. So it really resonated with me! And the. I have been following Jeannie for some time and voila, a perfect meeting of the minds discussing our relationship with our bodies and it’s challenges. I couldn’t of wished for a better podcast! Thanks you both.
I can relate to you more than you can imagine! I’m in an area where there isn’t an expert in my state for MCA so no formal dx(genetics and other specialists say they believe I have it but can’t get out of state for testing) also symptoms of csf leak but dony have access to chiari/Eds expert to do spinal tap. Dietician just put me in low histamine diet and was researching and found you. It’s amazing how big of a blessing my dog has been for me!!! Training her to be my service dog 🐕🦺 has been saving grace for me! I can’t wait to see your documentary, thank you both for this video! Prayers for all with these illnesses and those who advocate! ❤️🙏✝️
Very interesting Jeannie and Kiara, thank you both for taking to the time to produce this podcast. Lots ring bells, I have some new research to do 😉 xx
That's terrifying for me to even think about my children having my disease! I suffer everyday and I don't know what to do or where to turn anymore. My 10 year relationship with my husband is falling apart and I have 3 children who I hope to never have to struggle like me. I have completely lost hope. My whole life is falling apart.
Can this affect the bladder ?I am very sensitive to histamine ,gut symptoms go wild and nose always stuffy,,low blood pressure ,sweating ,flushing ,now I started having bladder symptoms ,no bacteria found but bladder is inflamed and I urinate all the time
Yes! The bladder lining is full of mast cells. I have Interstitial Cystitis (aka: Painful Bladder Syndrome) which has some similar symptoms to regular Cystitis but is not caused by a bacterial infection so no culture grows on the urine test. The pain is awful and I have to get up around 6 times a night to pee so never get a full nights sleep. Taking antihistamines helps and now my doctor wants to try Botox in my bladder! I had the distension procedure but it didn't help.
@@lisawanderess mine urine culture was clean 3 times ,I found out I had embedded E coli bacteria and taking d mannose in powder form plus some probiotics , especially s boulardi, completely cured me of my issues ,I took 2.5gr of powder of D mannose for 10 days but I would take it more if I have to in the future ,I honestly couldn't believe it that E coli was the cause , but d mannose helps after 3 days ,I suffered for months with all clean urine cultures ,she sticks to bladder wall and doesn't come out with urine
@@JeannieDiBonHypermobility Thank you. Do people with EDS do extensive stool testing? Is seems like EDS sufferers have a lot of gut issues. Since many auto immune diseases originate in the gut it can't be a possibility that EDS sufferers have general gut dysbiosis? Biobiome is often transferred to children from the mother, could it be that this is why it runs in families? Sorry if I'm not understanding this correctly but I hope there's a solution for EDS sufferers.
I'm from Oregon in the US and I have seen over 30drs. Of all kinds and I have had every test that has ever been a option here and I'm still completely suffering and left with very few answers. I was originally diagnosed with cutaneous mastocytosis from a dermatologist with a skin biopsy. Over 5 years ago when I was 28 but I started having severe symptoms what I was 24. No Dr believed me even though you could see it on my skin! Over time my entire body has completely fallen apart! I'm going to be 32 next month and I feel 90. It's so hard to actually be truly diagnosed because it's a matter of ruling everything else out first. There is no divinitive test to "prove" it's mcas at least not in Oregon. I see an oncologist every month along with many other Drs. As of now my insurance doesn't cover the meds I should be taking to help my symptoms so I'm just stuck in hell.
After giving up on regular doctor's because "your blood tests show no inflammation so you are fine"; a naturopath finally figured out what is going on with me. Thank you for sharing your story as I feel I have been through very similar things.
Glad this was helpful.
Thank you for sharing 💖 I feel so alone with mine, people don't realise how hard life is with MCAS. 🥺 But we must not give up and keep raising awareness 👩🏼⚖️💓
Thank you. Yes I totally understand. I’m glad this helped a little.
I'm crying right now. 😭 The online supports are so helpful.
🙏🏻
Omg, your story resonates with my experience. I am 69 years old and after having dysautonamia diagnosis from my cardiologist after falling and hitting my head, he said I have MCAS. Though the allergist said he doubts I have it yet says he believes something is wrong. He is old and I believe just needs to retire. I had tonsils out as a child, allergic (hives)to bee/wasp/ mosquito stings, asthma that has been severe ( prednisone for 2 years straight, IBS, SIBO, chronic debilitating migraine, vertigo, dysautonamis with low BP 90/60 is high for me, syncope, facial flushing, my body temp is unstable, unexplained muscle pain that comes on fairly quickly and leaves fairly quickly but makes me bedridden sometimes for days. Chronic sinusitis-sometimes severe, all of these symptoms come and go at their own will. I have no control. I also have ADHD. I have hyper mobile joints with ruptures discs, hips pop out of place and have muscle spasms. Drshate patients like us. Sometimes I hide that I am a retired ICU/ oncology/director of education with 35 years of experience just to see how my symptoms list affects the doctor. They hate patients like us, though some are very very good.
Glad this resonated with you
So I came across Kiara’s blog and was relating so much. I also have PMDD on top of EDS and mast cell activation syndrome. So it really resonated with me! And the. I have been following Jeannie for some time and voila, a perfect meeting of the minds discussing our relationship with our bodies and it’s challenges. I couldn’t of wished for a better podcast! Thanks you both.
Thank you. So happy you loved this.
I can relate to you more than you can imagine! I’m in an area where there isn’t an expert in my state for MCA so no formal dx(genetics and other specialists say they believe I have it but can’t get out of state for testing) also symptoms of csf leak but dony have access to chiari/Eds expert to do spinal tap. Dietician just put me in low histamine diet and was researching and found you.
It’s amazing how big of a blessing my dog has been for me!!! Training her to be my service dog 🐕🦺 has been saving grace for me! I can’t wait to see your documentary, thank you both for this video! Prayers for all with these illnesses and those who advocate! ❤️🙏✝️
Thank you - glad it was useful. Please watch her recent interview on remission too.
Thank you for putting a face and giving an eloquent description of mast cell disorders! Struggling with fragrances right now. 😔
Glad this was helpful.
Great and courageous! MAY GOD HELP YOU and all the Drs who research this disorder. Keep strong 💪. Thank you for sharing your experience!
Thank you 🙏🏻
Very interesting Jeannie and Kiara, thank you both for taking to the time to produce this podcast. Lots ring bells, I have some new research to do 😉 xx
I’m so glad it was useful.
Love this interview! I have three daughter's with EDS and Mast Cell Activation Syndrome and this was interesting and so encouraging.
I’m so happy to hear it was helpful. Thank you.
That's terrifying for me to even think about my children having my disease! I suffer everyday and I don't know what to do or where to turn anymore. My 10 year relationship with my husband is falling apart and I have 3 children who I hope to never have to struggle like me. I have completely lost hope. My whole life is falling apart.
Another great one, Jeannie - Thank You!
Thank you. Glad you enjoyed it.
Can this affect the bladder ?I am very sensitive to histamine ,gut symptoms go wild and nose always stuffy,,low blood pressure ,sweating ,flushing ,now I started having bladder symptoms ,no bacteria found but bladder is inflamed and I urinate all the time
Yes it can. That’s how I got diagnosed with mast cell.
Yes absolutely does, it happened to me, it comes and goes.
Yes! The bladder lining is full of mast cells. I have Interstitial Cystitis (aka: Painful Bladder Syndrome) which has some similar symptoms to regular Cystitis but is not caused by a bacterial infection so no culture grows on the urine test. The pain is awful and I have to get up around 6 times a night to pee so never get a full nights sleep. Taking antihistamines helps and now my doctor wants to try Botox in my bladder! I had the distension procedure but it didn't help.
@@lisawanderess mine urine culture was clean 3 times ,I found out I had embedded E coli bacteria and taking d mannose in powder form plus some probiotics , especially s boulardi, completely cured me of my issues ,I took 2.5gr of powder of D mannose for 10 days but I would take it more if I have to in the future ,I honestly couldn't believe it that E coli was the cause , but d mannose helps after 3 days ,I suffered for months with all clean urine cultures ,she sticks to bladder wall and doesn't come out with urine
Yes and this can throw your electrolytes off. I actually had to get pedalyte to keep from massive dehydration.
I was curious how to find the documentary when I looked it up I couldn’t find it. And the IG link on their account says the website is not found.
Maybe she removed it as she’s in remission now.
Hypermobility is also related to zinc deficiency.
What usually comes first, mast cell activation syndrome or EDS?
Can it be healed or at least halted?
EDS is a heritable condition. You would be born with it but may not have symptoms. There is no cure but you can manage both MCAS and EDS.
@@JeannieDiBonHypermobility Thank you. Do people with EDS do extensive stool testing? Is seems like EDS sufferers have a lot of gut issues. Since many auto immune diseases originate in the gut it can't be a possibility that EDS sufferers have general gut dysbiosis? Biobiome is often transferred to children from the mother, could it be that this is why it runs in families? Sorry if I'm not understanding this correctly but I hope there's a solution for EDS sufferers.
What tests help confirm this diagnosis?
You need to see an immunologist
@@JeannieDiBonHypermobility I’ve seen 2 but in New Zealand we are clueless
I'm from Oregon in the US and I have seen over 30drs. Of all kinds and I have had every test that has ever been a option here and I'm still completely suffering and left with very few answers. I was originally diagnosed with cutaneous mastocytosis from a dermatologist with a skin biopsy. Over 5 years ago when I was 28 but I started having severe symptoms what I was 24. No Dr believed me even though you could see it on my skin! Over time my entire body has completely fallen apart! I'm going to be 32 next month and I feel 90. It's so hard to actually be truly diagnosed because it's a matter of ruling everything else out first. There is no divinitive test to "prove" it's mcas at least not in Oregon. I see an oncologist every month along with many other Drs. As of now my insurance doesn't cover the meds I should be taking to help my symptoms so I'm just stuck in hell.
@@chelseakrahel2281 Try to get appt with Dr Sandeev Jain Columbia asthma and Allergy. He does television and has offices in WA OR and 1 in CA I think
I'm sitting here with hives, and realizing I need to take my meds.. lol 😆
😉 a good reminder
What did you end up taking to get your mast cells to calm down?
I took Ketofiten.
Hang in there! Isolation is so hard.
My mouth will not stop burning. It only stops if I fast for a number of days. My tastebuds are super inflamed.
Do you take any medication? Particularly psychiatric or blood pressure medication such as an ace inhibitor?
Do your lymph nodes in the neck swell up and hurt when your mouth burns?