Mast Cell Activation Disease - The Modern Epidemics of Chronic illness - Afrin

[Who Me?]

I haven't noticed any gut changes one way or another.

Then did I misunderstand why to take 30-60 minutes before meals to keep gut calm?

@Lissa Just bought some low phenol Neuroprotek. I'll be cured!

 

[Remy]

Then did I misunderstand why to take 30-60 minutes before meals to keep gut calm?

@Lissa Just bought some low phenol Neuroprotek. I'll be cured!

Leaky gut is small intestine; constipation is large intestine. I think!

Ketotifen is supposed to help with leaky gut by mast cells activated by food but I haven't noticed that translate to bowel habits. Although they do say it can take 6-12 months.

 

[Who Me?]

Leaky gut is small intestine; constipation is large intestine. I think!

Ketotifen is supposed to help with leaky gut by mast cells activated by food but I haven't noticed that translate to bowel habits. Although they do say it can take 6-12 months.

Well I could have both plus a bunch of other crap so who knows? I'm sure I'll be cured.

The stuff was cheap enough I got 3-4 month for $35 I think? So I'll keep at it.

 

[Issie]

Well I could have both plus a bunch of other crap so who knows? I'm sure I'll be cured.

The stuff was cheap enough I got 3-4 month for $35 I think? So I'll keep at it.

Would you post or PM me where you ordered from. GastroCrom is so expensive and I wonder if Ketotifen would work as well. GastroCrom helps my gut and bowel function tremendously. Also helps with a lot of my POTS symptoms.
Issie

 

[Lissa]

My apt yesterday went well -- my naturopath is on board with experimenting with H1/H2 blockers. This is all new to him, but thankfully he is open to new ideas.

I've been feeling better taking Claritin for seasonal allergies in the past couple weeks. We'll see if adding Zantac helps even more in the next month. Then if that seems to work, we'll look at adding (or replacing with??) Quercitin, flavinoids, etc.

@Who Me? that Neuroprotek sounded like a good blend -- let me know how that goes for you!

I'm interested in Ketotifen since I have so many problems with all kinds of foods now, but it wasn't one that he mentioned. Hard to find in the US maybe? Or am I thinking of the wrong one?

Do flavinoids and Quercitin do the same thing as Ketotifen? just curious...

 

[Who Me?]

@Lissa. Ketotefin is an antihistamine. Quercitin I think is an anti inflammatory. But don't quote me.

@Issie. When I'm on my conputer I'll pm you some links

 

[Issie]

I just learned of an herb that GastroCrom is based from called Khellin or amniotic visnaga. It appears to also help with vitiligo (that I have). Used as a mast cell stabilizer. Appears there is a warning that it could cause liver damage. It's not recommended to use long term. But if it works like GastroCrom, could be an option.

Issie

 

[Who Me?]

I found this blog today.

http://www.thepatientceliac.com/2014/01/04/mast-cell-activation-syndrome-madness/

 

[Remy]

I found this blog today.

http://www.thepatientceliac.com/2014/01/04/mast-cell-activation-syndrome-madness/

I think you should talk to the new dr about Gastrochrom for sure since you have so many gut symptoms. Remember you have to ramp up the dose because it can temporarily flare up issues before they settle down again.

 

[Who Me?]

I'll see which way she wants to go. I think she knows about histamine. I'll put it in my notes.

Thanks @Remy

 

[Who Me?]

@Issie

@Issie

sodium originally derived from a healing herb called ammi visnaga. Among its other uses, ammi visnaga traditionally controlled kidney stone pain. Its ability to open the airways intrigued early researchers. They eventually identified the plant’s active ingredient: cromolyn sodium. Cromolyn sodium is known to prevent mast cells from triggering the immune response. This response causes unpleasant allergy symptoms. However, it’s uncertain exactly how this activity helps prevent asthma attacks.

From a different site. Looks interesting

http://www.herbs2000.com/herbs/herbs_visnaga.htm

 

[Remy]

@Issie



From a different site. Looks interesting

http://www.herbs2000.com/herbs/herbs_visnaga.htm

The Low Histamine Chef site talks about khellin (another name for ammi visnaga). But it doesn't say anything about the awful side effects like the first site. I think I might be tempted to skip that one myself.

 

[Who Me?]

@Remy. I found it on amazon. Very good . People say it really helps with lung stuff which we know is an issue for me.

And one place said it was used to treat kidney stones. It's still widely used elsewhere. Worth looking into more.

 

[Who Me?]

"KHELLA Side Effects & Safety. Khella is POSSIBLY UNSAFE when taken in high doses or used for a long time. It can cause side effects including liver problems, nausea, dizziness, constipation, lack of appetite, headache, itching, trouble sleeping, and skin sensitivity to sunlight (photosensitization)."

 

[Who Me?]

Can some one tell me the dosage of Gastrocrom? I'm looking at the cost on my insurance site and I can't figure it out.

It does seem expensive. Can someone clarify for me?

 

[Remy]

Can some one tell me the dosage of Gastrocrom? I'm looking at the cost on my insurance site and I can't figure it out.

It does seem expensive. Can someone clarify for me?

Over 8 weeks ramp up from 1 vial a day to 8 vials a day (2 vials four times daily).

 

[Who Me?]

It's weird because on my insurance site one place says $200/month. Another says $35. Goodrx says $100.

This is where khella comes in

 

[Issie]

GastroCrom is now being doubled by my doc at Mayo to some patients. It is really expensive. The herb looks interesting, but I'm afraid of the side effects too. I've been on GastroCrom several years now. At my pharmacy without insurance it is $1,700 a month. Thank goodness for insurance.
Issie

 

[Who Me?]

I'm going to ask my Np about the other stuff. If you look at Goodrx they show prices at pharmacies. There is a generic gastrocrom.

The warnings were if you take too much for too long. Might be worth it.

 

[Issie]

Mine is generic. Problem is, few companies make it and there isn't a huge need for it. So they charge an unreal amount for it.

I may try the herb . But I already have liver issues, so will have to be careful. It's supposed to help vitiligo too. So that would be nice.
Issie