It would seem if you know what triggers it, and stop eating/drinking those things, and it should go away, but that's not always the case.  Sometimes any food can start uncomfortable symptoms.  Stress can make it worse, too.  

Yes, it can be a masto symptom, and it might come and go.  Do you take H1 and H2 antihistamines?  Those can help, too.  I find liquid Benadryl can help a gassy stomach.  Gastrocrom helps to stabilize the mast cells in the stomach and lower GI, and that might reduce symptoms.

Simethicone caplets are available over-the-counter and can help with bloating issues.  Directions and dosages are on the packages.  There's extra strength, too, if needed.

Even before my symptoms got bad and everything became a trigger, I had an excessive amount of gas.  Nowadays, if I have any GI symptoms they generally come along with lots of gas, bloating/swelling, pain, burning, you name it.   My husband can hear it when he's in the same room and feel it lurching around my gut when he hugs me! I also find the gas is far more uncomfortable, presumably because my belly is so swollen when this happens that it constricts the gas from moving easily through the system.  The key is to avoid your triggers as much as possible and get on good treatment.  I'm not there yet myself, even with a highly restricted diet and loads of antihistamines, but I'm hoping I'll find something to help eventually.  

I will say, anti-gas meds (simethicone) have NEVER helped me at all with this, nor has Beano or Lactaid, so don't feel bad if they don't help you.  (My husband is always pushing the Gas-x and just doesn't understand that it doesn't help me in the least.)

Thanks. It's just a new symptom and so it surprised me, but seems to be happening a lot lately. I'm on H-1 and H-2 but I am obviously eating trigger foods. I am new to the meds and keep experimenting with trying things to see how far I can go now that I am on meds. I keep trying to have a glass of wine etc.   I guess I now am realizing that the meds make you better but you still have to watch triggers. But I wonder why the Gas now when I have a glass of wine?  Pre Meds I would only itch and feel tired after a glass of wine. It's a bit frightening how this disease seems to be progressing. Maybe I should try the Gastrocrom.  I hadn't been experiencing much Gastro problems so I didn't think I needed it.

Deborah: I know you're right. I just have given up so many things already. And I really do miss being able to have wine with dinner or a cocktail at a party. Luckily I have not gone into full blown life threatening anaphylaxis yet, so I have the "luxury" of being able to experiment when I probably shouldn't.

You're right. I didn't know that. Is there a way to reverse a fatty liver once you get it?  My mother has fatty liver and doesn't drink. I am starting to wonder if she has Masto. She has the following symptoms.

1) Lung fibrosis (on Oxygen at night)
2) Osteoporosis
3) IBS (Diarrhea, Constipation, Belching)
4) Fatty liver
5) Mild itching
6) Psoriasis
7) High red blood cells
8) Had white stool a few times
9) Passed out a few times and was ambulanced to hospital where they said her blood pressure and blood sugar were low.

The doctors don't really explain any of it other to say she has idiopathic lung fibrosis and IBS.  One doctor actually put her on really strong tranquilizers for her non-extistent "anxiety" that was supposed to be causing her IBS. Of course all it did was make her fall down a few times. Since then I have been taking her to all her doctor appointments. I can't believe he would even give a woman in a walker such a drug.

Hi Lisa

Just recently I also found out I have an enlarged liver and have been experiencing the same kind of pain as you. My specialist is thinking this is being caused by the corticosteroid Florinef I am taking for POTS.....I have also gained major weight with little appetite....since starting my taper though the pain seems to be getting worse....I am wondering if it may not be related but more because of mast cell issues? my stomach is my enemy no matter what I eat or drink    did your gastro doc mention anything that you could do to help with the pain etc?

Thanks

Bren

Gosh, I didn't even see Bren's post  - this thread got buried somewhere!!!  


Peg, if your doctor didn't ask to do the right immunohistochemical staining for mastocytosis then your biopsies were not dealt with properly.   You can't see mast cells without the proper staining - PERIOD!   Unless the doctors know what to look for and ask for this then the pathologist won't know cause he can't see the elevated number of mast cell or whether those that are there are normal or malformed, etc.    So this right there is a MAJOR QUESTION regarding your biopsies.  Please confirm with your doctor that this was indeed done properly.  

With MCAS, the vast majority of us have incompletely fulfilled the criteria for SM.  That doesn't mean we don't have SM it could merely mean that we are just too early in the progression of our illness to fulfill the very tight criteria for that diagnosis.  In this case it means that the search for masto must be very thorough and every single tissue removed be run through the proper testing for masto and then the overall picture evaluated.   The diagnosis of Idiopathic Anaphylaxis, which is still competing with MCAS does not produce any kind of pathological changes in the patient, according to Dr. Metcalfe of the NIH.   Supposedly the diagnosis of non-clonal MCAS also does not, but it's still way too early to say that for certain.   However, MMAS and a pre-SM form of MCAS would indeed create this and this reinforces that this may be a pre-SM form of masto.  

So, if you already have this much activity going on in your case I would recommend that your doctor speak with Dr. Greenberger in Boston and have him confer with Dr. Greenberger about your case and what it all may indicate and how to treat it properly.

I hope this helps.


Lisa