Anyone With Mcas Try Gastrocrom?

[Christy_D]

My son is starting Gastrocrom tomorrow for his MCAS. Has anyone else tried it? Did you experience any side effects...negatives or positives?

So far nothing for the MCAS has helped. We first tried the aspirin therapy, then additional dose of doxepin, then quercetin. Now we are moving on to the Gastrocrom. Dr Afrin said there was a very long list of medications to try and this could take a long time to find the right one.

[jpjd59]

Christy:

My daughter tried Gastrocrom because they suspect she has a mast cell issue. Unfortunately, she was unable to tolerate it (she threw it up within a few hours of taking it). And she took 1/2 of the dose that the doctor wanted her to because she has been so sensitive to meds (maybe she should have started with even less than that). I have heard that it helps a lot of people though. Hopefully your son will be one of the ones that it helps!!!

I know you have been a "warrior mom" trying to find help for your son. He is truly lucky to have such a great mom!!!

Pam

[anaphylaxing]

I'm on it but started when I was having such frequent anaphylaxis and constant symptoms would be hard for me to know if I had any negative side effects. I started a bunch of new meds at once. I started to improve after about 4 weeks of being on it. Had also started ketotifen and was tapering steroids. SO who knows what's what.

sorry but still taking it. Been on it for over a year and do fairly well with food tolerances.good luck

[DoozlyGirl]

Christy,

I recall reading a bunch of Joan's posts on the MCD forum on a really slow tapering protocol for gastrocrom. I know of several who have tried it and abut to give up until they tried Joan's tricks.

Good Luck,

Lyn

[Dizzysillyak]

I haven't tried Gastrocom but I noticed you tried aspirin. Aspirin is an nsaids that damages the gut

lining. It may take some time for his gut to heal from this and may require a bland diet, bone broths, probiotics, etc.

I'm having success with Wal-zyr. But .. I can already tell that I can't over eat my known trigger foods

without some break thru symptoms. It took several days for me to react to all the chocolate I was eating

tho.

So do you know what his trigger foods are ? Common intolerances are gluten, dairy, corn, soy, eggs, chemicals

, etc. Or whatever he craves. I stopped craving chocolate until I had it again. Then I acted

like a junkie needing a fix .. Lol ..

It makes sense to me if you think about feeding peanuts to someone with an anaphylactic reaction

to peanuts. Even an epi pen doesn't always work.

Tc .. D

[MightyMouse]

Also, keep in mind that some stomach remedies also contain asprin, especially the ones that fizz in water like Alka Seltzer.

I'm actually seeing a subspecialist soon for my gi issues--persistent break through reflux despite multiple medications (nexium 2x day, pepcid at night with the nexium, plus benedryl 50mg, singulair, and zyrtec daily; and i have a long list of medication reactions too. I will be asking the new guy about the possibility that this is histamine problem.

[Christy_D]

Thanks for the replies. We are tapering up very slowly, 100 mg every 7 days until he is on 800 mg(200 mg 4x day).

We haven't figured what his triggers are, he is just in a perpetual state of sickness. When this ordeal started we did the food diary, eliminations, introducing of foods,etc..Dr Afrin said some people never can figure out what their triggers are. His mast cells dump too much heparin and PGD2. His histamine was on the high end, but they test was also done while he was taking doxepin(which has anti histamine).

[Dizzysillyak]

Sorry to hear you can't find his triggers. Good luck with gastrocrom.

I'm beginning to understand this concept better myself.

I found and avoided multiple triggers for 7 years but I just developed new intolerances to some of the new foods

I added. I'm even allergic to some of my probiotics now too. Including an expensive Metagenics one.

So much for taking probiotics to heal the gut.

As much as I hate to admit it, I still feel much better avoiding my known triggers tho. It was fun experimenting with these and antihistamines while it lasted.

I made the mistake of drinking Kombucha tea

over the weekend thinking I was giving myself a treat. My prize was a swollen bottom lip. Lol ..

At the risk of being a pest have you tried steroids or other immune suppressants ? I found some mcas people

on the web trying these but didn't look into yet.

I was thinking we may

need to take these in the beginning and at regular intervals if things get out of hand. I started with 10 mg

Dhea and 10 mg pregnenolone last week but it hasn't helped. I'll be increasing those today.

I'm completely clueless about steroids tho. I know my dds docs used to give them to her after she

needed her epi pen tho. I guess it helped. It still took her a few days to feel normal again.

Tc .. D

[LindaJoy]

I was on gastrocrom for six months, several years ago. I experienced no side effects with it, but it did nothing for me, either. I did show kidney failure on my blood tests while on it, but I honestly don't think it was true failure; I think the gastrocrom affected the results somehow.

I wish your son the best on his illness and gastrocrom trial.

Linda

[issie]

Interesting, I was going back through some of the post on GastroCrom - cause my kidney function is going back down again. The Diamox really affected it badly .Anyone else having some side effects ---possibly related to Gastro Crom?

Issie

I was on gastrocrom for six months, several years ago. I experienced no side effects with it, but it did nothing for me, either. I did show kidney failure on my blood tests while on it, but I honestly don't think it was true failure; I think the gastrocrom affected the results somehow.


Linda

[Angela]

I'm not on Gastrocrom but my friend who is hyperpots and was rx'd it recently said it is nasty stuff and gives her horrible mood swings like being on steriods would.

[issie]

Didn't have the mood swings - but, started having heart pains and all the color draining from my face - just generally not feeling well the last week or so. I just talked to Janie (Dr. G's nurse) she will run it past him. I do however, have a Kidney doctors appt. next week. (I've been waiting on that for 2 months now.) So will discuss this with him and also will be bringing up my low aldosterone and renin levels. So, will see (since he is a researcher too) if he can come up with a reason and solution with that and the connection with POTS.


Issie

[issie]

I've been off GastroCrom for three days now ---having major MCAS symptoms --- numb face, hot flashes, edema is coming back ---more POTS symptoms with swings in blood pressure and terrible tachy. I'm still taking the H1 and H2's ---but, I KNOW that GastroCrom was helping with things. I just broke down and took a dose - cause I feel so uck! I will see what happens. There has to be a way to help MCAS and not have the meds affect your liver and kidneys. I had it suggested to me that it may be that the liver and kidneys will respond better when I get the MCAS more under control. But, do I want to take that chance of them getting worse?

I think that it was either the H1 or H2 I was taking that was causing the heart pain. Cause I took them without the GastroCrom and had the same feelings. So, have to sort out which one was causing that. It's all trial and error -----with soooooo much error.

Issie

[Christy_D]

Issie,

Can you take a lower dose that you tolerated? Perhaps a little or some is better than none.

Christy

[issie]

Christy, That's what I'm hoping - cause the dose I took a few hours ago is helping already. My nervous system calmed down with it. I KNOW it is helping.

It could have been either the H1 or H2 or the aspirin - that caused the problem with my liver/kidneys too - So, I will be asking a whole lot of questions.

Issie