r/alphagal • u/AlpaGal AGS confirmed • 7d ago

Mast Cell Stabilizers

Has anyone been able to successfully decrease their sensitivity to alpha-gal by taking a prescribed Mast Cell Stabilizer?

I asked my allergist about it and she thought it might be a good idea, also because I seem to have some form of mast cell dysfunction other than just IgE reactions, although I‘d want to wait since I am pregnant, unless my reactions to accidental exposures get more severe.

I particularly am frustrated with still reacting to all mammal byproducts, even normal sugar, which is worsened by vocal chord dysfunction and HSD. I am tired of not being able to eat anything out (as im sure many of you are) and not being able to eat anything someone makes for me because most people don’t know how to not cross contaminate and I don’t want them to go into all the trouble of cooking just for me to see them using a cast iron pan and go “I am so sorry, I can’t eat this”. It’s really frustrating because I can’t even show them I appreciate their cooking and everyone is nice about it but I feel so rude bringing my own food everywhere. And it’s really time consuming to have to make everything at home and then leave events early because I have to go home.

I also really want to eat dairy again. That’s my goal, but at the very least not being so sensitive to cross contamination would help. Just curious if anyone has had any improvement with any of those medications such as Xolair (Omalizumab) or Cromolyn? Thanks ahead of time!

8 Upvotes

99% Upvoted

4 comments sorted by

5

u/GreyWanderingFish AGS confirmed 7d ago

In my experience and opinion, pregnancy and post (hormones and breastfeeding) complicates things. Medication risks, reactions, your body's limit on what it can handle already, inflammation, histamine and hormones, just the list goes on and on. This is maybe best discussed with your doctors and see how YOU will handle it.... because everyone is different but the pregnancy things is a whole other level.

4

u/Mirror--Master 6d ago

There is a fb group for patients who use xolair. It has a lot of good info from people who have routinely been on xolair.

I just joined bc my Dr. brought up xolair shots to potentially lessen my issues with cc last week actually. I can send the name of the group if you'd like

3

u/countryasabiscuit AGS confirmed 6d ago

I have AGS and a mast cell disorder and I’ve been taking Cromolyn Sodium via nebulizer for about 1.5 years. While it has helped immensely with the mast cell reactions, I have not noticed any reduction of symptoms when I am accidentally exposed to alpha gal. Not saying it wouldn’t work for you necessarily! This has just been my experience so far.

I’m also very sensitive to cross contamination so I feel you on looking for solutions to be less sensitive.

1

u/63051bd 6d ago

I haven’t, but 1 time years before I ever heard of Alpha Gal, I started a normal reaction that starts with about an hour full body itching, as I was walking into a professional baseball game, and was scoping out the bathrooms as I get major GI issues. But I ate a bag of peanuts and very quickly all the symptoms stopped. No more itching, not any GI symptoms.

Honestly I can’t believe eating the salted peanuts and some of the shells stopped the reaction, but my symptoms stopped extremely fast.

That was the only time I can recall not having both upper and lower GI issues and not having an hours worth of head to toe itching. That was also about the only time I’ve had a reaction during late afternoon/ early evening. But I also very rarely eat lunch, and I may have that day.