I was diagnosed with MCAD about ten days ago by Dr. Glover at USF using Tryptase immunhistochemical stains that were done on tissue samples from my GI tract.

I think I've been dealing with this my whole life. I was started on powered skim milk at 4 months old (I’m very reactive to dairy) and had my first allergy shots at 3 yrs old.  At 17 I hired my first psychologist because I felt so sad. It took me two decades to realize that psychologist and psychiatrists were not able to help me.  By that time I had tried living in Europe and also daily exercise, positive thinking, CBT and every depression medicine at least once and a few in combination with other meds.  I had been diagnosed with severe, chronic depression; bipolar; bipolar without the mania (really?); dysthymia; and tourettes.  And I'd also been hospitalized for a sincere suicide attempt by then (at around age 30).  

Aside from one idiopathic anaphylaxis event in my 20’s and a rare inflammatory eye condition, there was nothing anyone could see that “proved” I was sick and not crazy.  Please don’t be upset with me for saying that I wish I’d broken out in a rash or passed out and bled from my ass or something visible.    

Around 37 I decided to try non-mental health professionals, such as nutritionists, endocrinologists, allergists, GI  and functional medicine doctors.  I started with my GP who was convinced that my breathing difficulties were anxiety and prescribed valium (which started my addiction to benzos and took me years to wean myself off).

What I realized after about $30,000 was that if they were ‘conventional medicine’ docs they said there was nothing wrong with me (or tried to give me anti-anxiety and anti-depressant meds).  If they were not covered by insurance they managed to diagnose me with something they could fix in about two years with a boatful of money.  For example, heavy metal poisoning, yeast, thyroid problems, food sensitivities, adrenal insufficiency, gluten sensitivity, hormonal imbalances, leaky gut, sinus infections, mold toxicity, etc.  I spent SO MUCH $$$$$$ on things like IV chelation therapy to remove the heavy metals; supplements; tests not covered by insurance; and dental work to remove my mercury fillings; etc., etc.  

THANK GOD I work at a doctor’s office, because after seeing me struggle with food for four years, a doctor I work for got me into a university research institutional facility to see Dr. Glover.  I explained my physically symptoms - fatigue, breathing problems, nausea, sore throat and ears, insomnia, itching, coughing, headaches, serious abdominal pain, heart burn and depression that came and went. She told me that anti-depressants were not a good idea for me based on both a strong negative reaction to them and the fact that they didn’t help me feel any less depressed.  I have only been on the Gastrocrom for a week, so I'm still hoping it'll do the trick.  

If anyone has had their mood changes and/or depression improve on Gastrocrom or other related meds, please let me know.  I feel like I've been on CRISIS MANAGEMENT my whole life. I'm thrilled there's a community who understands!  

Hey I just read your story and you must be so relieved to at least finally have a correct diagnosis and in time Im positive you will feel better. This forum has been so helpful to me because my husbands symptoms came on over night (trip to er form toxic reaction to fish) a year ago and nothing made sense.

I hope the gastrocrom works for you, it takes a while though and keep at it. i felt like weve had a love hate relationship with it, had a hard time tolerating it at first, then we didnt think it worked, then started again and the past 2 weeks his stomach is doing so much better. My insurance doesnt cover it so its very expensive.

You said that you had an inflammatory eye problem? My husband was diagnosed with this rare eye disorder called Pigment Dispersion Syndrome...the color of your eye flakes off and can cause glaucoma but thats not the dangerous part the flecks can get caught in the mesh and make you blind. They arent sure if its related or not to masto but when he initially got sick and went to the ER when he came home his cision had changed and now needs to wear glasses. He also gets a recurrent stye in his eye that comes and goes. We use ocusoft eye cleaners to help keep his lashes clean, padatay for inflammation and ketotifen eye drops if they get itchy.

Can i ask you about those IV therapies you did? We recently went to a naturopath here in DC who suggested those, we couldnt do the Vit C infusion because it makes you hot so that would automatically kill my husband but we tried a 1/2 dose of the peroxide infusion. Couldnt believe we even did that and it freaked me out so we havent done it again.
He didnt react or anything but I feel like if I put too much of anything in his body good or bad he could react.

I know you'll start to feel better and I feel like there isnt anyone thing thats helped my husband get better but a combination of the right meds, stress management, diet, sleep and good doctors ect...You are definitely in the right place and all the amazing people on this forum are so helpful and frankly more knowledgable than most drs I see!

Oh I'm pleased you aren't going to do the cluster immuno therapy!!   I was concerned about that.   Gem, I think that before doing anything like that you really need to talk with an authority immunologist like Dr. Castells or Dr. Akin.  They would understand what your doctor is trying to do with you and whether or not it's worth the risks.  It may be that it could help, I don't know cause I really don't know about the therapy, however, the fact that masto reactions are not caused  by the same mechanisms, if our doctors don't understand masto, then they aren't going to know why it won't work and why it may even be very risky to do so.  

I have heard Dr. Castells approving patients to do some of these immuno therapies, but I think that this is only when the patient has TRUE allergies.  Then it would actually be beneficial for a masto patient for by helping to desensitize the patient to their already proven allergies, this would help to reduce triggers and thus give improvement to the patient.  But if you're a patient like me with negative IgE blood tests, then this therapy serves no purpose and may only put me into danger from triggering my hyperactive mast cells instead.

So, perhaps your doctor has a point if your tests are showing true IgE mediated allergies.  But if she's not understanding masto and not understanding your reactions and hasn't done the proper blood testing, then she's fiddling with things she doesn't know about and that's dangerous.  This is why I'd say, Dr. Akin or Dr. Castells would be whom to run to for advice for that - Allergies and masto are their babies and THEY KNOW!


I hope this helps!

Lisa