Cromolyn oral suspension

I know a lot of us with MCAS have tried cromolyn but has anyone taken the oral suspension? My doc prescribed 10ml 4x a day (half hour before each meal). I was wondering if anyone had success with this one as opposed to the pills or nasal spray. I believe 10ml = 200mg so it seems like quite a bit.

Also, does anyone know if cromolyn can calm down a histamine attack a couple hours after it starts?

Lol jb -liking that acronym?

jb1994 said...
I know a lot of us with MCAS have tried cromolyn but has anyone taken the oral suspension? My doc prescribed 10ml 4x a day (half hour before each meal). I was wondering if anyone had success with this one as opposed to the pills or nasal spray. I believe 10ml = 200mg so it seems like quite a bit.

Also, does anyone know if cromolyn can calm down a histamine attack a couple hours after it starts?

We used the compounded powder. Did you mean the over the counter nasal spray?

Cromolyn powder worked well for us in the beginning and stopped mast cell reaction within a half hour. But after year or so it had a back lash effect and caused a mast cell reaction. I finally quit using it. Now that her gut is healing, she has many less mast cell attacks.

jb1994 said...
No it's in little tubes and you squeeze it in your mouth and swallow it. What did you do to heal the gut?

She ate only whole foods, nothing processed, for the last year. We did an IGG food test to determine which foods were causing issues. Took those foods out for about 4 months and later added many back in. Many foods not listed as reactive were giving her mast cell attacks, like nuts. So I took those out too for a while. No gluten, dairy, soy, grains. I am still rotating foods but am optimistic that I'll be able to stop rotating soon. Just three weeks ago she was reacting to almost all fruits. So I decided to try SBI Protect (immunoglubulins) again; which the integrative doctor prescribed. I had tried it several times in the last year but she reacted to it. Anyhow it seems to be working and she is tolerating a full dose. Most food mast cell reactions have stopped. She even tolerates a couple supplements.

This is a long answer to your question but basically I think the SBI Protect has stopped leaky gut symptoms and some of her mast cell attacks.

jb1994 said...
Oh, wow. I eat well during the week but not the weekend, I'm sure if I cut that out I'd be doing better but geez it sure is a trade-off between sacrificing all pleasure and just enjoying what life there is to live. SBI Protect, I'm going to have to look into that and mention it to my doctor.

Her leaky gut and mast cell reactions were so severe that we didn't really have a choice. We had no life outside of coping with constant food and mast cell reactions. SBI Protect really turned things around for us. I just hope it continues to work...

please talk to your doctor to stop cromolyn and give quercetin a try

chromolyn is an inferior MAST stabilizer compared to quercetin and it is also ridiculously more difficult to procure than quercetin.

you can give your dr this paper to read
https://www.ncbi.nlm.nih.gov/pubmed/22470478

jb1994 said...
Well this was a failure. I've gained weight every day that I've taken it, in spite of eating less and less to get rid of said weight. Can't believe it. This didn't happen last time I took it. Definitely going to ask about that SBI protect, have to make a note of it.

Are your mast cell issues from leaky gut?

Cakegirl, I realize this is an older post, but I am also dealing with MCAD and wondered how your daughter is doing now. Do you think the SBI protect really turned things around for your daughter or was it the IGG food test? I haven't been able to treat Lyme or detox mold due to severe MCAD reactions so any info is appreciated. Thanks

I take it and it has been a lifesaver.

It helps stabilize mast cells in the GI tract and beyond so I am sure it will help. Start with a very low dose though, literally a drop or two. I started with more and had a horrible mast cell reaction.

I had to stop, wait a few months, and restart at the tiniest of doses.

Also best to start it when you are at a good baseline with minimal reactions. That was part of the problem for me, I started when I was very reactive.

I hope it is helpful!