Brige...I agree with Larken, I am not starving on the cromolyn (gastcrom). The Ketotifen made me think about food constantly! I never had a full feeling.  I told my husband there was no shut off valve!  I could eat and eat and just never get the feeling of being full, very strange.  I am also very salicylate sensitve so "healthy" snacking is hard me. That cuts out a lot of the fruits and veggies.  I love to bake and this has been an issue in gaining weight.  Baking things from scratch with butter and sugar...all those no no's!
Larken, I'm glad the weight came off for you!  I have some hope!
I need to stop being Betty Crocker!
Pam

Ahhhhhh, weight gain and medications!!!! Gotta love it! I am on so many darn psychiatric meds (which I probably don't need to be one since they've been treating my "panic attacks" and "pit of doom" in my belly which I believe are from mast cell activation) that I have put so much weight on. I just hate the idea of adding yet another med to add to my already growing body. But if it makes me feel better, so be it. Is that the general  consensus, the ketoitifen makes people hungry and cromolyn not so much so? I am really anxious to get on a stabilizer as intuition tells me that because most often I am stuck in that "fight or flight" state (which is awful!) that my mast cells are going bonkers!

I absolutely agree with Pam (and Pam, I think we are very similar in our "shade" of mast cell disorder).  I was on meds for depression and anxiety for years and none helped much, but several of them made me a lot worse.  I thought it was my depression progressing (which led to its own cycle of hopelessness), when in fact it was my reaction to the meds.  

The turning point for me was finally piecing together all the mast cell symptoms and getting on the right MC stabilizers, H1 and H2 meds and avoiding my triggers (chocolate, salicylates, caffeine in any form, exercise, dairy are terrible for my mood).  If I cheat, I feel symptoms for a day or two.   I no longer need psych meds. I just need to manage my mast cells as best I can and I feel much better and more stable mentally.  

You mentioned GI issues.  Have you had the chance to do an elimination diet to find out if you have food triggers?

As Pam suggests, it is best to find someone who is a true expert in mast cell disorders and explain your symptoms to get on the right path.  I wouldn't change your current routine without this guidance.  (And my experience is that most doctors, even good psychiatrists, have no clue about mast cell disorders and the link with psychiatric symptoms.)  

Have you looked under the thread of best mast cell doctors here on the forum?  You could see who is closest to your area.  Really unless the doctor has any knowledge of mast cells it is a waste of time and money.
I was having anaphilaxas at work and my co worker looked at my thoat she is a nurse, and told me to leave and go to immediate care center. I get there and the doctor tells me that I was just stressed out and needed to take meds to calm down.  He was a jerk.  He wouldn't listen to me at all...then in the middle of the visit we got a call that they had found mold in out house...which was one of the causes of my triggering. He had no clue.  Interesting enough the week before I was in the same immediate care center and a nice woman nurse practitioner was taking care of me...she started asking good questions, before I left she told me to go home and look really really well, to find what was causing me to have these allergic reactions.  On the way out of the jerk Dr visit I saw the nurse practitioner and and walked up and thanked her and told them that they had found mold in the house and I would have never looked for it, if it wasn't for her!  (I said it right in front of jerk doctor!) Hehe that felt good!
Anyway you need a doctor that has a clue!
Good luck,
Pam

Thanks Pam and Larken! YES! I can relate to that article! So the good news is that UC Davis is in network for me and because I have a PPO plan I am able to self refer!!! Yeah!!!! So I already got the ball rolling with Dr. Rosemary Hallett. I saw that Ramona had seen her. I hoping that she takes me and that she is well versed in mast cell disorders. She is under the "allergy" department at Davis. Has anyone else heard of her??? I am so excited!

So I got an appointment with Dr. Rosemary  with UC Davis! On one hand I'm very excited, on the other I'm a little apprehensive as she does not have mast cell disorder as one of her specialties. But she does list urticaria and angioedema. I just hope she knows enough to possibly test me further, just from my symptoms, I feel Luke I must have MSAS or masto, unless autoimmune urticaria can have similar symptoms (does anyone know the answer to that?) All I know is that I feel very sick most of the time and I need to feel better for both me and my family. I just hope Dr. Hallett is the answer!

Yes, autoimmune urticaria can have similar symptoms because it can trigger secondary mast cell activation (different from chronic, primary mast cell disorders), so it is important to find someone who can think systematically to determine which it is.  

I was actually diagnosed with this at one point because my most prominent symptoms were urticaria and angioedema.  It was so easy for the doctors to SEE, unlike my GI issues, cognitive and mood problems, aching body, headaches, dizziness, near-fainting, exercise anaphylaxis and a million food triggers.  All of those were invisible and tests came back negative early on, so it seemed like some doctors doubted that they existed.  

I explained to the doctors that most of my symptoms started long before the urticaria and angioedema and they basically said, "We can't help you with those complaints, we can only treat what we see. You should go see a psychiatrist (ortho, rheumatologist, etc) for your other problems."  I explained that I felt strongly that they were all related in some systematic way because they flared together.  But, it was difficult for them to think outside of their specialty.  The reality is, as you know, mast cell issues are just not not on the radar of most doctors and they treat what they know.  

I even requested a specific mast cell med from an allergist who was willing to treat me for the urticaria to see if it would help my whole range of symptoms and he said, "No, I've never used that medication with patients before so I won't prescribe it."  Argh!  What if I am one in a million and this is the only medication that could help me?  Does he just use the same 10 medications on people his whole career?!

Anyway, as I mentioned I finally found the doctor who understood how it all connected.  Now that I am on the proper treatment for MCAS, my urticaria and angioedema are largely under control.  Not surprisingly, I still have all my other mast cell symptoms, though they are much better, too.

Anyway, I would recommend taking the following to a first appointment to help your doctor in case she is not as familiar with MCs:

- a simple list of mast cell disorder symptoms with the ones checked off that you have experienced and the approximate dates that various symptoms began

- a list of tests that are normally prescribed for mast cell disorders

- the diagnostic criteria for mastocytosis and MCAS

- the study that I shared with you earlier on cognitive and mood symptoms

I have also developed a one-page list of triggers (food, alcohol, exercise, cold, etc) and usually shared that with doctors after they had the chance to review the list of common symptoms.  

I always started with a new doctor by saying, "I am not a doctor and don't presume to know more than you about medical issues, but this is what my research has turned up and why I think that this is what I am experiencing.  I am looking for a doctor who either knows about mast cell disorders and has treated them before, or is willing to think together with me in a systematic way, since this is a rare disorder and not many doctors, even, know much about it."

Hopefully your doctor can follow the diagnostic criteria to rule things out one by one and you can get to the root of the problem soon!

Good luck!!

is this article online that can be read
if so please either email me or post it...would like to read it
redbird