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Mast cell disease/mastocytosis

Posted Jul 26 2012 12:00am
Things have calmed down at work a bit. I've been trying to follow their rules although at times it is difficult for my stomach - any little bit of stress sends my tummy into an uproar! I was hoping to attend the EDNF Conference this year; but it looks like it won't work out due to my son's school starting and his needing oral surgery again. Yes, he has crazy EDS teeth. Anyway I was hoping to learn more about mast cell disease at the conference this year. I really do think that is a lot of my problem!

Mastocytosis explanation

Since I can't go I've been doing some of my own research and what I am finding is VERY interesting to say the least. I noticed when I eat certain foods my face will flush, my heart will pound and palpitate and then I'll get diarrhea immediately. Yesterday out of curiosity I looked up what foods are high in histamine and yep those are the ones that usually do it!

These foods contain histamine and should be avoided: spinach, eggplant, lunchmeat and processed meat, and anything fermented, cultured, or aged (includes soy sauce and many soy products, vinegar, cultured and pickled veggies such as sauerkraut and pickles, sourdough bread). Fish, unless it is gutted and cooked immediately, should be avoided. Some people report problems with beef because it is routinely aged (I have also heard that beef is often treated with MSG at the time of butchering, and many amine sensitive people are also sensitive to MSG). Histidine is an amino acid (part of protein) that converts to histamine by microbial action, often pretty quickly, so some people can’t tolerate leftover meat.....

Additionally, there are foods that can cause the release of histamine and may be problematic even though they don’t contain histamine themselves. Foods that may cause the body to release histamine include milk, wheat, eggs, chocolate, berries, fish, shellfish, nuts, and tomatoes. Foods that are reported to cause the direct release of histamine from mast cells are uncooked egg white, shellfish, strawberries, tomatoes, fish, chocolate, pineapple, and alcohol. I haven’t seen this mentioned anywhere, but it makes sense that foods to which a person is allergic should also be avoided for obvious reasons.


HOLY COW! These are some of my worst offenders! I did a little more digging and found:

Physical Stimuli and Substances that Can Activate Mast Cells --------------------------------------------------------------------------------
Emotional stress
Physical stimuli (e.g., heat, cold, friction, exercise, sunlight, sexual intercourse)
Bacterial toxins
Venoms (bee sting)
Biologic polypeptides (e.g., lobster, crayfish, jellyfish, ascaris)
Polymeric eye drops (containing dextran)
Immunologic stimuli (e.g., IgE)
Complement-derived anaphylotoxins

Acetylsalicylic acid (aspirin)
Amphotericin B (Fungizone)
Gallium (Ganite)
Narcotics (e.g., morphine, meperidine [Demerol], codeine)
Nonsteroidal anti-inflammatory drugs
Polymyxin B (Aerosporin)
Radiographic contrast containing iodine
Scopolomine (Transderm Scop)


note: Not all stimuli are active in individual patients.

From Cutaneous and Systemic Manifestations of Mastocytosis (This article states also that "Mast cells originate from bone marrow progenitor cells and are distributed throughout the connective tissues" (!))

So my question is, what is it about EDS that makes these mast cells go wild? Because our connective tissue is stretching around too much? Or do we have too many mast cells? I have noticed when I am calm I can eat a small amount of these foods but when I'm stressed I can't eat much at all. There is a cumulative effect. I've gotten to the point where if I want to eat a bit of tomato sauce I just take some antihistamine with it! OTC of course because I have not found a doctor yet who knows how to treat this.
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