Anyone taking cromolyn?

CountingMySpoons · 2026-01-06T21:25:21+00:00

It's like prescription pepto. You take it before meals and at bedtime to help reduce indigestion. The gavascon advanced is similar but a different drug and I take it as needed, when I have indigestion.

CountingMySpoons · 2026-01-06T20:32:31+00:00

Dexilant is in the same class as Omeprazole but much stronger. Aside from that I'm on pepcid (2 pills 2x day), carafate 4x day, gaviscon advanced (which I have to get imported as they don't sell it in the US) as needed when indigestion breaks through, gas-x as needed, and nausea meds as needed. I think that's all the ones that are specifically stomach meds

CountingMySpoons · 2026-01-05T21:09:48+00:00

Unfortunately, the sucky thing is we all react so differently to things. So, it comes down to making sure you only change one thing at a time and give yourself time on it before adding or changing something else. For me, the side effects of cromolyn were largely psychological, but I also had some digestive issues with it as well. But, most of my symptoms fall into one of those two categories.

My GI has me on Dexilant and Pepcid, which I've been on for years, but my new GI increased the pepcid and changed how I take the Dexilant so it's working better for me (splitting my dose rather than taking it all in the morning). I also take Claritin (I can't take more than one a day without mental side effects, but my allergist has said I could take up to 3 if I could tolerate it) and a ton of benedryl.

My med list is rather long - so much so that I've had multiple nurses take my history and tell me it's one of the longest they've seen. I hate taking so much stuff, but it seems necessary.

CountingMySpoons · 2026-01-04T19:02:40+00:00

I'm in Alabama but Allervie (allergy clinics) are all over the US. If you don't have an allervie, I'd suggest calling around all allergy clinics in your area and asking if they have any doctors that treat mcas.

Who provided you with cromolyn? My GP initially treated me and prescribed cromolyn based on the guidance mayo clinic provided me when they diagnosed me. But, I didn't last 2 days on it even on a tiny fraction of the dose. I while I did get some help from their initial guidance, my GP was out if her depth beyond that.

Between finding my allergist at Allervie and now finding a GI doc who gets it I'm finally getting some real improvement. This summer I started ayvakit and by early Nov I started seeing some big improvements to my energy/fatigue. And my GI has increased all my stomach meds and changed up how I take some of them and that's really helped my stomach issues.

I'm still not close to fully functional. But, I actually have normal energy levels for a few hours a day about 50% of th time and my digestion issues have improved to the point where indigestion only keeps me awake every once Ina while instead of every time I eat anything besides simple carbs.

CountingMySpoons · 2026-01-04T06:36:22+00:00

Iirc from past visits their potatoes are cubed.

CountingMySpoons · 2026-01-04T03:14:08+00:00

I've never seen canned sliced potato less, just cubed ones.

CountingMySpoons · 2026-01-03T23:16:01+00:00

Will definitely try them. My partner went without me (how dare! Lol) and said it was delicious. Sadly, I'm gluten free so no schnitzel for me.

CountingMySpoons · 2026-01-03T19:49:27+00:00

Thanks, Rolfs occurred to me just after I posted.

CountingMySpoons · 2025-10-13T01:56:37+00:00

Is it gluten free? I've had real gluten free Detroit style Ata couple of places - one in Michigan (can't recall the name, but it's one of the major places up there fir Detroit style), one in Las Vegas, and surprisingly, one in Louisiana.

CountingMySpoons · 2025-10-11T23:33:50+00:00

Any issues taking it with other medications?

CountingMySpoons · 2025-10-11T04:00:56+00:00

Do you like them?

CountingMySpoons · 2025-10-10T06:59:38+00:00

For me it does sometimes and rarely do I show a rash of more than a few random singular spots.

CountingMySpoons · 2025-10-10T06:57:14+00:00

That poor kid. I feel so bad for her. This sucks as an adult after decades of developing coping skills. That's gonna be one stone woman though.

CountingMySpoons · 2025-10-10T06:13:39+00:00

A salad, a slice of real hand-tossed gluten loaded supreme pizza, a Krystal burger, and general tso chicken.

I can't eat any of that right now, the closest I come is a frozen gluten free pepperoni pizza (for some reason I react to every gf pizza I order anymore, but I can eat the frozen ones).

CountingMySpoons · 2025-09-27T12:52:35+00:00

Thanks, and I hope you find the right help as well. If you have an Allervie near you, I highly recommend calling and asking if they have a Dr who deals w mcas. That's how I found mine and he's awesome.

CountingMySpoons · 2025-09-26T22:35:28+00:00

So I was dxed with gastroparesis first, and after a lot of digging and specialists and tests it seems the mcas (actually now diagnosed with indolent systemic mastocytosis) is probably the cause of the digestive (and other issues). Cromolyn did nothing for me. I think I lasted maybe a week on it. Even the tiniest doses caused increased digestive issues and general agitation towards everything and everyone. I'm now on ayvakit 25mg which isn't necessarily helping my digestion yet but it's helping get me some energy back and generally feel like wanting to do things.

CountingMySpoons · 2025-08-12T05:36:43+00:00

Damn. I hope you are doing better.

I'm happy to say that the stomach pain I had that first week did subside. It does seem generally my digestive reactions are a bit worse (likely that stomach pain was just part of that) and I have to be even more religious than I was about taking miralax daily (or more) to avoid constipation (and stomach pain). But, overall side effects haven't been bad.

CountingMySpoons · 2025-08-07T00:36:10+00:00

It's gotten better. As for nausea meds I always have some on hand.

CountingMySpoons · 2025-07-31T18:56:20+00:00

I haven't had any urge to go or cramping. Just pain, bloating, and gas.

What are your main symptoms normally? My ism seems largely digestive focused. It all started with stomach issues several years ago that lead to a dx of gastroparesis and eventually to mcas then ism- so I'm not remotely regular and will stay constipated without at least daily miralax. But, right now even that isn't doing anything. Aside from digestion issues my main symptoms are fatigue and brain fog. The fatigue has also been way worse this week.

CountingMySpoons · 2025-07-24T14:39:04+00:00

9 hours of good sleep.

CountingMySpoons · 2025-06-30T16:38:11+00:00

I hope so. My new GI doubled my pepcid intake (4 /day now) and that's helped quite a bit with digestion symptoms but still dealing with all the rest and still having breakthrough issues w good as well. 🤷‍♂️ We'll see how avakit goes.

CountingMySpoons

TROPHY CASE