For those of you on Gastrocrom, would you share benefits/side effects that you've experienced and timing from start of treatment?  Following identification of mast cells in my GI tract, my doctor started me out on one ampule, 3 times a day before meals for the first week, then doubled to 2 ampules beginning week 2.  I did o.k. in the first week, but had horrible gastritis last night following the increased dosage.  With Gastrocrom, I have been able to eat a little dairy and wheat, which amongst a number of others are trigger foods.  Some mild abdominal pain has also popped up again after many pain free months of avoidance.   Anywho - I don't think it is blocking triggers as much as I'd hoped, but perhaps starting over the holidays is a bit too much of a stress test!

Thanks so much, Joan.  More issues with new years eve dinner - The holidays were definitely a bit much for the start up period!

Hi Hope,

  Sometimes people do have a hard time starting Gastrocrom and getting up to a therapeutic dose. Each person has a different level that works for him/her.  I take only 4 vials on most days, where others need 8 vials.  What other meds are you taking daily and/or periodically?  You may need more H1 and/or H2 antihistamines.

  I still occasionally have a little nausea after taking gastrocrom, and sometimes it has triggered lower GI symptoms.  I don't know why.

  There are a number of things to try.  Keep experimenting until you find one or more that help:  

--Drink the gastrocrom solution over 1 or more hours, instead of 1/2 hour.  

--Mix it with more water, e.g., 1 vial in 3-4 cups water.

--Take it with food or after eating.  

--Sip it in very small amounts throughout the day.  

--Go back to 1/8, 1/4, or 1/2 vial in 2 cups of water and build up from there as tolerated.  Adding a little more every day or every other day might work, or build up slower, if necessary.

You might want to talk with Dr. Miner about trying ketotifen instead of gastrocrom if you think it's too hard to build on the gastrocrom.  It's available from a compounding pharmacy in Colorado, so probably one of your local compounding pharmacies might be able to get it.  Otherwise, it can be mail ordered.  If you need it, I can give you the Colorado Springs pharmacy info.

Have you kept a food and symptom diary?  Some people have trouble digesting milk products.  If you're using broth, histamine could be a problem if it's sitting in the refrigerator overnight.  Histamine begins building in foods, especially meat products, in a short time due to bacteria in the food that produce it.  If you make a batch of broth and then portion it and freeze it, you can thaw it out as needed.  Freezing keeps the bacteria from producing histamine, but refrigeration doesn't.

If you haven't already, look at the low histamine diet and see if there are any foods on it that you think you might tolerate.  A teaspoon or less at a time would give you an idea if you can eat it.  Someone had a good recommendation the other day, and that is to put a bit between your lip and gums and see if you feel a reaction or tingling.  If so, don't eat that food.

Commercial broths often have additives (even natural ones) and ingredients that can be irritating to the stomach, so those wouldn't be recommended.  They also can have high histamine and/or high levels of mold.

Your fatigue could possibly be caused because you're not getting enough food or might be dehydrated.   With as little as you're eating, dehydration could cause some serious problems due to mineral imbalances.  There are hydration solutions at pharmacies that might help.  You might have to ask them to order one without artificial colors or flavors.

You might want to ask Dr. Miner about other supplements that could help your GI system, like probiotics and l-glutamine.

Hi Hope,

  Sometimes you can do everything right and it still takes a long time to become stable.  Glad to hear you're having a better day!  Be sure to stay on your current diet until you're further along on the Gastrocrom.  I meant to mention that it doesn't happen often to me anymore, but if I start to feel cramping, nausea, or other symptoms after taking my gastrocrom, I just drink an additional glass of water and that seems to make it go away.  

  When you try a new food, as soon as you're a bit more stable on Gastrocrom, be sure to do it very slowly, starting with just a dab inside your lip or cheek, if that's what it takes.  If it tingles or you feel any type of reaction, rinse your mouth and don't try that food again.  If it's okay, then later that day, try swallowing 1/2 tsp or less if you don't feel comfortable with 1/2 tsp.  Work up by taking more every couple of hours, or even wait until the next day.  This kind of very slow addition can slip food in "under the radar," and sometimes your body will adjust over time.

  I've had luck re-introducing foods as you would give a baby, e.g., start with pureed foods, such as rice cereal.  Next would be sweet potatoes, winter squash, or carrots, also pureed.  And so on.  Pureed foods take some of the stress of digestion off the GI.  I don't know what's in baby formula, but that might be something that would have high nutrition and be easily digestible, unless there are intolerable additives.

  Sorry if I've already asked this, but are you on any H1 or H2 antihistamines?  They can play an important part in healing your GI that's over-reacting to almost everything.

  Keep in touch with Dr. Miner.  If you have any questions or concerns, don't be shy about calling his office.  Often a nurse or P.A. can answer you, and if not, ask her/him to check with Dr. Miner.

  I know you feel miserable a lot of the time, but starting to re-build your body might have other benefits, too.  I started out walking from my bed to the front door.  Then I went out the door and down to the sidewalk.  It took a while, but now I'm walking and hiking and not having any rebound from it (unless it's too hot outside, but that's another story....  ).

  Hope the Gastrocrom keeps working for you!  Remember, recovery isn't a straight line.  Don't let a bad day discourage you.  If you have symptoms from the meds again, simply back off to the point where you didn't have any, and try again the next day to increase.

If it were me, I'd ask my doctor about H2 antihistamines, like Pepcid or Zantac.  Most mast cell patients get a lot of relief from taking those morning and night.  He might not want you to start 2 new meds at once, and might prefer you wait until you're at a therapeutic dose of gastrocrom before adding anything else.  I started with H1 and H2 antihistamines and added Gastrocrom much later.  Every doc has his or her own way to do things, and either way would be okay.

You have a good doctor now, and you're getting up on your meds.  If you're patient and stick with it all, you should feel better soon!

Hi Hope,

I take Gastrocrom.  When I started it, Joan was my mentor as well.  It was one of the few meds I had left that I had not already reacted to so I knew I had to work really hard at trying to take it successfully.  Joan had me start with ONE TEASPOON in 16 oz. of water....needless to say, it took a long time to work up to the four vials I was first on!!

I remember Joan always saying to me, "If you are really reacting, go back to the last day you felt good and follow the regiment you used on that day".  It helped a lot!  Granted, some days you have other "triggers" such as lack of sleep, stress, eating something that you accidentally didn't know was a trigger for you, etc.

It took me 4 or 5 months to work up to 4 vials.  One thing I still can NOT do is take my (gastrocrom) cromolyn in the morning.  It makes me really nauseated and I get super dizzy.  I have no idea why, but I start taking it with my "second" breakfast late morning and continue from there.  I sometimes think (this is just my opinion) that because we go without meds while we sleep, we are more vulnerable in the mornings (histamine is at it's highest in the early morning hours, etc). But, I find as the day progresses, I sometimes can take two vials at a time.  Some mast cell experts say to take it 30 minutes before you eat....some say it actually works better if you take it with meals....my doctor told me to "take it whenever and however I can, just get it into me)      Besides, I eat a lot of small meals throughout the day (which is easier on our systems) so it would be hard to gauge when I am actually going to eat something and when I am not!!

Because we are all so different, what one of us does may not work for another one of us.  So, I drink mine slowly in a 16 oz. bottle of water through out the day.  It has a short shelf life (about 2 hours) so it seems to be more stabilizing for me that way.  My body just can't handle two vials at a time most of the time.  IMO, try to experiment and see how you feel spreading it out more.  What you are explaining when you talk about a tickle or burning sensation in your throat IMO could be your body letting you know it's too much all at once.  Of course if you continue to have those symptoms, you need to call your doctor immediately!

I am not sure if this is a good way to look at it or not, but I always think that if my mast cells are so hypersensitive, why would they NOT be sensitive to new meds as well???  It's like adding new foods (which I still can not do after 14 months!) we have to sneak them "under the radar" as Joan said.  

I now take 7 vials a day.  My dose was doubled (from 4 vials, to 8 vials) 9 months after I started on the Gastrocorm.  On some days I only get 6 or 7 in.  In that time, I have had to scale back several times when I was super reactive or really sick.  And then I would work my way back up to the dose I needed to take.

I hope this isn't too "wordy".....I guess I am saying that for me, the benefit of the medication (I couldn't eat anything without it!!) has been worth the "trial and error" of getting the best benefit from it.  In the last 2 or 3 months it has also increased my energy level!! YEA!!

I hope this somehow helps!  But PLEASE call your doctor if you continue to have any burning or coughing, especially if you scale back and it still is happening.  Then you need to stop taking it and call right away.  OK?

I wish you the best.  Please keep us posted.  Hugs, Lynda

Thank you Lynda!

I skipped the evening dose last night and am just taking one vial this morning-still working on it and going very slowly. I may or may not take a single vial PM dose tonight-it will depend on how this morning dose goes.

I'll definitely call the doctor's office tomorrow if the burning/coughing happens again today.

Glad you're better, Hope.

I recently started having trouble sometimes with my Gastrocrom, so I switched from 2 vials twice a day, to 1 vial 4 times a day (1 before each meal and one at bedtime.)  It helped, and now I can do it either way.  

Weather fronts are rough for me, too.