MCAS & Gastrocrom: Why I Can’t Live Without It

I started on cromolyn sodium oral just about a year ago now so I thought I’d check in here with a post updating how this medicine is affecting my mast cell disease.

Obviously since I’m still on it a year later that means that I am getting some benefit from it, otherwise why would I bother, right? It’s true, I am definitely benefiting from it, which I’ll explain in a bit, and I’m also not reacting to it, which is a blessing. Otherwise it would have went by the wayside along with quercetin, aspirin, Naproxen and Singulair which I’ve reacted badly to so far this last year.

So first of all, what is Gastrocrom?

From WebMD:

This medication is used to treat mastocytosis, a disease that occurs when the body has too many mast cells (**edited to add: it is also used for mast cell activation syndrome, which I have). These normal body cells release substances (e.g., histamines) that are needed for normal body defense and healing, but when too many mast cells are present, they release too much of these substances. This can lead to symptoms such as diarrhea, stomach/abdominal pain, itching, rash, and flushing. Cromolyn belongs to a class of medications called mast cell stabilizers. It works by preventing mast cells from releasing the substances that can cause these skin and gut problems.

I use the generic form of Gastrocrom — cromolyn sodium — and it comes in a box full of aluminum foil wrapped doses with 8 vials per day (2 vials 4x daily) with 100ml of liquid medicine in each vial.

It is almost completely flavorless and I use a full glass of plain water with two vials each mixed in and drink it at least 30 minutes before I eat, so that’s 200ml per dose, which I can do up to four times a day. Some people are on much less and some people are on much more, I find this is the amount that helps me the most.

What exactly does it help me with?

  • abdominal cramping/pain
  • inflammation in my intestinal tract
  • mucus production in my intestinal tract
  • malabsorption/malnutrition (because of the mucus)
  • nausea
  • anxiety
  • constipation/diarrhea
  • skin flushing/itching

Those are the things I notice it affecting the most. I feel like the ranitidine (generic Zantac) I also take daily helps more with the acid production in my stomach and the other all-over allergic symptoms (it’s an antihistamine, too) but the cromolyn sodium gets really deep into my intestines and helps so much with the symptoms I have there. It’s where so much of my disease seems to concentrate so it’s important to me to do whatever I can to keep my gut mast cells under control.

I did go off the cromolyn sodium for three days recently because I wondered if it was causing some side effects but it doesn’t seem to be the culprit. I am glad I did it because I was immediately able to see how much it is helping me. In just those three days all of the symptoms I mentioned that it helps with came right back. Especially the mucus. I get a LOT of intestinal mucus when I’m not using the cromolyn, which means inflammation, so for that alone I will stay on it.

As for the malabsorption issue, that’s my own theory based on the fact that when my intestines swell up and get inflamed they produce all this mucus and I can’t imagine that having my intestinal tract coated in it would allow for the proper nutrients to get where they need to go. I haven’t seen it in the medical literature so it’s just a hunch, but I’m pretty sure that’s what’s going on because as soon as my son got on Gastrocrom (he has MCAS, too) he began putting on healthy weight for the first time in his life. I, too, have gained healthy weight after being underweight most of my life.

I do find that drinking so much water has it’s pluses and negatives. I am only dosing my cromolyn oral before meals, so my last dose at night is well before bed time and that helps me not have to get up and down to pee all night.

I also learned to drink plenty of water with it, despite what others were saying (someone said they just drank the vials alone sometimes!). By not using enough water it doesn’t get all the way through my intestinal tract and doesn’t do a good job. If I drink a full, tall glass with it, it works really well and my intestines work smoothly afterward.

I haven’t been able to add back foods though, even though I’ve read some people can eat foods that normally trigger them after being on this for a while. It seems that my food triggers are stubborn and aren’t going away, but at least the medicine is helping in so many other ways. I am beyond thankful to have found it and its cousin, NasalCrom, which I use almost daily to battle the same inflammation/mucus problem in my sinuses. NasalCrom also helps when my throat tries to close off, too, so they are definitely keepers.

Of course these are just my own personal experiences and this is not medical advice, but if you’re having a lot of abdominal issues you may want to consider Gastrocrom (if you haven’t already, that may be why you’re here!_) and if it’s not working right away, don’t give up! It can take a few weeks for some people to see a difference. For me it was almost immediate. After a year now I can honestly say that it’s one medicine I won’t be doing without again!

 

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