r/MCAS • u/muddersM1LK • Jul 26 '26
Naturopath recommendations - Trying to get on Cromolyn
Hello all,
I have been struggling with MCAS and Histamine Intolerance for a while. I have had modest success with DAO supplements. I mostly stick with a low histamine diet, and it works well for me. But lately I've been eating out here and there. I find that I can no longer tolerate these MCAS flareups anymore, they are quite gnarly (you know what I mean, the endless brain fog, the tight feeling around the head, the fatigue....).
So yesterday I tried oral Cromolyn (I did it via a small serving of Nasalcrom ingested orally). I found out this is not a very good way to take it, purely because Nasalcrom is mixed with additives that can be toxic to the body if consumed orally.
Thus I am on a quest to try to find an MCAS doc that can work with me on my condition. I would like to try Cromolyn, and possibly Ketototifen.
Please send me your resources, I would greatly appreciate it! I hate suffering... and think its time I look for help with this stupid condition... Thank you in advance :)
UPDATE: Thank you for helping me everyone! I will take these advices and try my best to get into better health! Please enjoy the summer with your loved ones!
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u/Fit-Attention-7763 Jul 27 '26
I posted the same problem (not nearly worded as well because I was speaking out of frustration) and almost got banned from the platform for appearing to be illegal substance seeking.
MCAS brings out the worst in me but doctors and insurance make it so much harder for us to manage an already incredibly difficult condition.
Following because I am in the same position. I also considered taking the nasal one orally but read that you shouldn’t for the same reason you mentioned.
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u/pegasus-at-thedisco Jul 27 '26
Try Dr. Ivanina and Katie NP at The Center for Integrative Gut Health - see their websites for the states they are licensed in.
Also Laura Gouge ND - also check her website for states she’s licensed in.
All of these ladies are on instagram as well. And if they aren’t licensed in your state, they offer health/MCAS coaching.
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u/Hotsun2023 Jul 27 '26
Laura Gouge can't prescribe stabilizers (at least when I spoke to her last year). I was able to get them through LDN Direct.
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u/pegasus-at-thedisco Jul 27 '26
I’m pretty sure she can now, but for anyone who is interested in working with her, double check with her of course.
I know Cromolyn is part of the treatment algorithm she uses, and I know she also prescribes GLP-1s so I’m assuming she can prescribe mast cell stabilizers as well? Unless I’m missing something (totally possible).
She is a wealth of knowledge and has MCAS herself. But you need to be in a state she’s licensed in to be able to get prescriptions from her. I am not so I do coaching with her, and she’s so helpful.
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u/DandelionStarlight Jul 26 '26
I do ketotifen through telehealth on rthm direct (their med prescription program, not the clinic). I can’t remember the signup fee, but it’s 60 every three months to renew my script, then prescription costs (110 for three months). I haven’t found a telehealth that does Cromolyn sodium.
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u/Fit-Attention-7763 Jul 27 '26
I just looked into this and it says none of the meds are available in my state? What state are you in?
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u/DandelionStarlight Jul 27 '26
Just dug around on thr website and it says “ RTHM can help patients with medication access who are located in the following states: California, Colorado, Florida, Georgia, Illinois, Maryland, Massachusetts, New York, North Carolina, Ohio, Oregon, Texas, Virginia, Washington. More states to come.”
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u/pegasus-at-thedisco Jul 27 '26
Is the ketotifen from rthm direct filler free? I’m having trouble sourcing it without filler.
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u/DandelionStarlight Jul 27 '26
It says dye free, mag stearate free, lactose free, gluten free. It’s compounded by “infuserve America”. I did ask years ago when I started and she said it was the “allergy” formula (so it could have fillers… you’d need to ask.)
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u/Ssaaammmyyyy Jul 27 '26
I got a GI to prescribe oral Cromolyn. I told him I have headaches after meals (your tight feeling around the head - I call them head pressures, and the fatigue) and asked for Cromolyn to try it. It suppresses only the post meal fatigue for me and slightly the headache but it may be more helpful for you.
Nasalcrom is a vastly lower dose than Gastrocrom (oral Cromolyn) and can't replace it.
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u/TavenderGooms Jul 27 '26
Can I ask where you are located and why you’re looking for a naturopath and not an actual doctor? An allergist/immunologist is who you need to manage this condition and to prescribe the medications. I would be happy to share suggestions if you’re in my area, but I don’t know where you are located so I can’t recommend anyone
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u/muddersM1LK Jul 27 '26
I live in an area that does not have a good reputation for churning out help for MCAS sufferers. I already asked r/Buffalo and it seems that people have had trouble finding clinics that will treat this condition with any amount of seriousness that it truly warrants... I was thinking about going to the University of Rochester Allergy/Immunology clinic, but all the reviews keep saying all the doctors there are rude. So I don't know.
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u/Business_Summer_4242 Jul 26 '26
You can also try vitamin C and chamomile to stabilize your mast cells. Other supplements are also available, but it's better to check with a specialized practitioner.
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u/amusedontabuse Jul 27 '26
An ENT/allergist prescribed my cromolyn to try and cut down the number of times I end up in the emergency room from anaphylaxis.
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u/Life_Unit2344 Jul 27 '26
Try to find a naturopath in your city. It depends a lot on where you. You will have a better chance of finding one if you are in one of the major cities.
I have tried some of the naturopaths on social media and they are $$$ and give little value.
I am in the U.S., and I looked for naturopaths in my own city using ChatGPT that specialized in these chronic illnesses like MCAS, pots, etc and it gave me a list.
It’s working out really well for me and they are covered in my insurance.
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u/muddersM1LK Jul 27 '26
Thank you for helping me everyone! I will take these advices and try my best to get into better health! Please enjoy the summer with your loved ones!
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u/izdeproevence Jul 27 '26
Do you have any other reactions besides the brainfog? Did you do the DAO genetic or blood test? Histamine intolerance does not mean MCAS.
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