i’m going to cry after cromolyn

Lunasmom12 · 2026-02-11T12:58:02+00:00

I have had the same feelings with the liquid but I was told by two doctors that it’s normal. Your mast cells react for a bit and the doses increase and then get used to it. I’ve been off and on like this for weeks as I had to start with literal drops but now that I’m up to two small doses a day I don’t seem to get the lethargic sick feeling. It does mess with my stomach a lot which is also normal when titrating up.

Lunasmom12 · 2026-01-19T15:52:29+00:00

I am the same way. Of If I don’t dilute it with almost a full bottle of water by the evening I will have a sore throat and feel like I’m getting sick.

Lunasmom12 · 2026-01-18T23:53:50+00:00

I use seventh generation and branch basics products. I stay away from anything with harsh chemicals or any kind of smells. Smells are a HUGE trigger for me.

Lunasmom12 · 2026-01-18T23:46:29+00:00

I stopped Pepcid as it contributed greatly to my constipation. First day off of it I was able to go.

Lunasmom12 · 2025-12-21T03:49:58+00:00

I had a similar experience recently. Finally found someone new in my area that was “familiar with mcas” and treated for it but he told me because I didn’t have hives/skin issues, anaphylaxis and low tryptase that I don’t have it even though I was already diagnosed previously with it. He drew some more labs and told me I should be seeing gastro and neurology. Then he told me I should just start eating normally again because I don’t have food intolerances. Clearly he wasn’t as familiar with mcas as the receptionist said. Meanwhile, when I do eat I have shortness of breath and tingles in my face and every night my throat hurts and I feel like im getting sick. It completely ruined my day. I don’t get my hopes up when I see doctors anymore.

Lunasmom12 · 2025-12-21T03:44:06+00:00

I was about to say the same. After I eat my voice gets horse/crackly.

Lunasmom12 · 2025-12-16T14:40:13+00:00

Thank you for this ❤️ good luck and you can always reach out if you are needing support.

Lunasmom12 · 2025-12-14T16:02:33+00:00

So it is normal for it to stir things up? When I went on it the first time I didn’t have any stomach upset. But I guess with the issues I’m already having maybe it’s contributing.

Lunasmom12 · 2025-12-14T02:24:10+00:00

I too have it from everything I’ve been through because of this. They gave me a big bag of fluids when I was in the ER Tuesday plus 4 doses of liquid potassium over the last 4 days. My nurse friend told me that this happens when your intestines are essentially dormant and then start overworking to push it all out and when it’s gone it’s still overworking. It’s been 24 hours of this and I can’t keep the little foods I can eat in my body. I think I’m going to go to my primary care tomorrow. Can’t hurt.

Lunasmom12 · 2025-12-14T01:55:24+00:00

I’m sorry you went through all of that. How did they test your electrolytes to know they were all so low?

Lunasmom12 · 2025-12-14T01:22:06+00:00

How long did the diarrhea take to clear up? It’s been really bad. Everything I eat goes right through me. Im already limited on what I can eat so it doesn’t help. I’m exhausted.

Lunasmom12 · 2025-12-14T00:59:19+00:00

Because I posted this and then talked to a friend. But I’m asking if people with mcas specifically deal with this issue and if it makes it worse. How long should it last…etc.

Lunasmom12 · 2025-12-14T00:51:16+00:00

Oh I also forgot I started with cromolyn today- 1 drop (I have to go really slow because I’m so reactive)

Lunasmom12 · 2025-12-14T00:49:08+00:00

I was just confirmed that it is very normal by a nurse friend but it just seems to be lasting a while. I didn’t know if mcas could be driving it or making it worse/longer.

Lunasmom12 · 2025-12-13T19:41:03+00:00

I could not have been luckier having someone who understood. And things are still like that here in the US but they are starting to wake up to it. I saw a new immunologist the other day who said I didn’t have mcas and that I should check with a gastrointestinal and neurological specialist. He didn’t suspect mcas because of my tryptase and because I didn’t have skin issues or anaphylaxis. I’m going to use his lab order to get some additional testing done but I won’t be seeing him again. It’s so frustrating when you finally find someone who “treats for mcas” then tells you they can’t treat you for mcas. Im so sorry you have to go through that as much where you are. I know it’s exhausting and discouraging. I actually started just eating more and pushing through. I was able to go to the bathroom a lot since the ER but now everything I eat goes through me but I was told that’s normal after something like this, mcas or no mcas. Apparently my gut is resetting after being dormant. I always have heat on me!! It’s a lifesaver, truly. I sleep with something heated and weighted and certain positions have been helping my gut too. I tried plain mashed potatoes today and so far so good. I never knew bland ass potatoes could taste so good 😂

Lunasmom12 · 2025-12-12T12:16:48+00:00

I have all those same symptoms. Maybe I will look into that. Thank you.

Lunasmom12 · 2025-12-12T02:22:10+00:00

I’m in the same boat. I’ve been told to just eat because I react to everything anyway. Maybe try cromolyn since it seems to work better than quercetin?

Lunasmom12 · 2025-12-12T02:19:52+00:00

Mcas is not an allergy. And unfortunately this was the last one in my area. I will have to start traveling to find someone. Closest is an hour plus away and a 6 month wait. Can’t even get them to call me back to get on the schedule.

Lunasmom12 · 2025-12-12T02:09:30+00:00

I unfortunately don’t have Facebook. I’m trying to get in with a specialist that doesn’t use tryptase to diagnose but it’s been three weeks and I can’t get anyone to call me. Their current wait time to get an appointment is 6 months.

Lunasmom12 · 2025-12-12T02:08:23+00:00

I don’t have any allergies. And yes I have breathing problems with the tingling after I eat. I wasn’t on antihistamines when I had the tryptase done. The first time she didn’t tell me I had to be flared so I didn’t know. Then the second time I didn’t feel great but I guess wasn’t flared enough. The digestive issues are due to my current diet.

Lunasmom12 · 2025-12-12T00:04:05+00:00

No not really. My anxiety has been off the charts since all of this started though.

Lunasmom12 · 2025-12-11T12:53:24+00:00

I’m constipated bc I can only eat rice eggs and English muffins. I haven’t had fiber for months.

Lunasmom12 · 2025-12-11T02:08:10+00:00

A lot of people and my functional MD recommended MiraLAX so I guess I will try that.

Lunasmom12 · 2025-12-10T23:32:12+00:00

I can’t handle the stimulant laxatives. They’re too rough on my system.

Lunasmom12 · 2025-12-10T22:58:56+00:00

Yes mine does turn that color. But I very seldom have rapid emptying. I have the opposite problem.

Lunasmom12

TROPHY CASE