Mast Cell Disorders Forum

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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> Allergic to Gastrocom/Cromolyn Sodium http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1318466695 Message started by GodIsLove on 10/12/11 at 13:44:54

Title: Allergic to Gastrocom/Cromolyn Sodium
Post by GodIsLove on 10/12/11 at 13:44:54

Hi Everyone
I was taking the Gastrocom 3 (6 vials) daily and I developed a severe allergic reaction and had to stop taking it. I also take Nexium twice daily, Singulair, Zyrtec twice daily, Zantac twice daily. I have severe reflux disease even though I have had the Nissan Fundolipcation surgery done twice, last time was 2/11, and after this was when the Mastocytic Enterocolitis showed up, was officially diagnosed 6/11. The meds help some but I am homebound. Was wondering if anyone knew something else to help the pain and diarrhea. Already take loperamide for diarrhea. Gastro doc says can't take other meds that slow down motility in stomach. No aspirin or Advil just Tylenol. Anyone have any news on this front.
Thanks
Rosemary :)

Title: Re: Allergic to Gastrocom/Cromolyn Sodium
Post by Joan on 10/12/11 at 19:32:10

Hi Rosemary,

Sorry you've developed this allergic reaction, and M.E. is no fun at all! I wonder if you might want to ask your doctor about ketotifen, a different type of mast cell stabilizer. My gi doc likes it better than gastrocrom for his patients. I haven't used it, but perhaps someone on this forum will respond who has. I know it's available in Canada, and I believe people in the U.S. can order it through pharmacies in the northwest. You might want to search this site to find out how, if you want to try it. Benadryl is said to have mast cell stabilizing properties, so that could be an option if you can take it.

In addition, I wonder if you have been tested for parasites. Those are a known cause of M.E.

I have found that several supplements have helped me with gi symptoms. Of course, run any meds or supplements by your doctor before trying something new. I like l-glutamine, which helps to normalize the mucosa in the intestines. I also find that probiotics keep everything pretty normal in my digestive system. I switch among different brands, but my favorites right now are PB-8, available at health food stores and Whole Foods and online, and also Align, available online and at many pharmacies. I take 2 PB-8/day for a day or two and then cut back to one/day. I don't take it every day anymore. Align is only one/day, and now I only take it a few times/week.

I'm wondering if you can tolerate or have tried any other anti-inflammatories. I use bromelain as a digestive aid, but it's not for people who have a pineapple intolerance or allergy.

There are two doctors I know about who treat a lot of M.E. patients, in case you want another opinion on your case. They are Dr. Scot Lewey in Colorado Springs, CO, and Dr. Phillip Miner, in Oklahoma City, OK. I'm sure there are others, and your doc may be an expert in this area, too.

The last thing I want to mention, in case you haven't tried it, is the low histamine diet. This is the link to it:

http://www.urticaria.thunderworksinc.com/pages/lowhistamine.htm

If you stick religiously to it for a few weeks, you may be able to figure out if certain foods are aggravating your condition.

Hope you get some relief!

Title: Re: Allergic to Gastrocom/Cromolyn Sodium
Post by mikev on 10/13/11 at 09:03:53

Joan:
On the ketotifen, I live in US & got my via mail from a Canadian pharamcy, all you have to do is get your doc to prescibe it. If you go that route a couple of things. First If you try the pills,I didn't go the capsule way as wanted to be able to cut them to start slowly. Don't get the generic, they are made in India, get the real zaditen from England. One concern with it, it's inactive ingrediant is cornstarch, which is high in sulfites, a concern for some of us. The liquid version also has a concern that I didn't know until I got it. It has a high level of alcohol. & alcohol is usually bad if you have mast cell issues. So both caused me issues. But I'm lucky so far going on a couple years no problem with gastrocrom, I was just looking for more help in my leaking bad skin mast cells.
MikeV

Title: Re: Allergic to Gastrocom/Cromolyn Sodium
Post by Susan on 10/26/11 at 08:12:41

I get my ketotifen from Clark's Pharmacy in Belleview Washington. 1-800-480-3432.

The pharmacist there is very kind, and can answer your questions about the drug. As it is compounded, they can make the capsules any size you want. When I started, I opened the capsule to take just a small amount, but found I didn't have any negative reactions. It has been very good for helping my GI issues and terrible joint pain.

I don't know if it has corn starch, but I am sure you can ask the pharmacist if that is an issue. He has celiac, takes the ketotifen himself, and is very willing to help you get started.

Title: Re: Allergic to Gastrocom/Cromolyn Sodium
Post by DeborahW, Founder on 10/26/11 at 15:12:56

This Topic was moved here from Using this forum: Tips and answers by DeborahW, Founder.