I'm sorry I can't offer much help as I have not been diagnosed yet but have all the symptoms.  You are right, the only way I have found to survive is to stay home & stay away from people, things & life.   That is not an option with children & family.  I used to wear a mask when I cooked food for my family or cook it outside so I didn't have to smell it.
Seems the only foods I can eat are things that are not healthy.  I only eat organic foods, mostly bread from white flour, rice, potatoes, beef, low fat milk, egg white.  I stopped trying to go by a diet I just eat what I have the least reaction to.    I hope you find help soon.

A few ideas/questions...

Are you taking antihistamines?  Do they help?  If so, are you taking enough of them?  It's safe (and often necessary) for people like us to take more... sometimes far more... than the "normal" dose.

If you can tolerate them, here are some ideas for foods that are dense in nutrients and high in calories: nuts, seeds (some you can eat as a snack, others like flax and chia can be added to foods like oatmeal), coconut (a can of full-fat coconut milk has 800 calories), and avocado.  Personally, I'm only bothered by foods that are fermented or actually contain lots of histamine like tuna, mackerel, aged cheese, etc...  None of the "histamine-releasing" foods... spinach, tomatoes, citrus... are a problem.  On the other hand, I can't eat gluten, raw bananas (latex allergy), or shrimp.  The "low histamine diet" is just a guide, not a prescription.

I know it's maddening trying to figure these things out, especially when you're busy taking care of a family!  Unfortunately, mast cell disorders are super quirky and require a lot of trial-and-error.  

Heather

Hi,

Thanks for the replies. I take 180mg Allegra, 1/2 Singulair (cannot tolerate more due to agitation), swallowed Flovent for my throat, and Zantac in the am.  I take Zantac 150mg 4 times/day, Zyrtec in the afternoon, and Benadryl before bed.  Dr. B at Mayo said he's "not worried about my histamine" because I have that covered with what I take.  I am going to start aspirin per Dr. B's recommendations for high prostaglandins x's 2 now--tried once so far, but bad timing--didn't know it was the day before my period, so will try again on Friday.  No diagnosis from Dr. B, even though I meet all the criteria from the TMS material and he is on the board for the TMS society.  No help as to how to STOP the reactions after I have a big one.  I have begged for some guidance on that, and got nothing.  If you really know how this disease works, how can you let people suffer without trying to help them?  My primary told me maybe I should go to Boston.  I was also thinking of seeing Dr. Miner in OK.  I saw a lot written about him here, and with my EoE diagnosis, maybe he would be good?  

Heather--thanks for the tips.  I do put flax seed in my homemade bread.  I will try the coconut milk in rice--that's a good idea for calories.  My diet right now consists of (organic) oat cereal, bananas, milk, homemade cookies, potatoes, organic corn chips, and water.  I ate mushrooms this whole time, but per the Mayo guidelines, cut them out when I was reacting as they are supposed to contain histamine.  I noticed no difference, and now I'm having a hard time eating them.  I used to eat green beans, but now my throat swells within 2 bites.  I'm just sick of hair falling out, and skin looking like crap.  I'm excited for spring, and hope going outside and exercising again will help.

Thanks again and FutureHope--I'm so sorry to hear that.  I get too dried out from extra antihistamines too, and it makes me feel worse.  I hope the stabilizers will help me.  Have you tried aspirin at all?  For some, I know this has been a miracle drug.  Did Dr. Afrin recommend it for you?  I hope you are feeling okay right now and I wish everyone the best.  Sarah