Our little guy has had some MCAD symptoms almost since the beginning.  He had reflux, which was helped with some elimination from my diet while breastfeeding...and it took us 22 months to get a solid poop out of him.  It all really hit the fan at 14 months, when I weaned him.  He had hives one and off for 22 days straight.  After eliminating ALL major allergens and foods that we were able to define on food logs, we were left with nearly everything whole food, nothing processed and tons of random foods he couldn't eat, but with no obvious pattern to us (until we found out they were nearly all histamine rich and acidic in his system).  

Max has had some wild reactions.  Horrible blisters that lasted for a week on his ankles from olive oil, hives and swelling from tomato juice and pineapple juice just touching his wrist (we saw later that these foods have the ability to release histamine directly from mast cells, so this made sense to us), hives from change in temp-coming in from outside or going into a bath, a contact reaction to peanut butter that flared his entire arm up to his face, a near-hospital visit for a jellyfish sting last March, tons of flushing and hives from heat and food... and more.  Just after his second birthday, he had an anaphylactic reaction to a walnut...I'm grateful I had the epipen, but sad I had to use it that day.

We saw an MD Homeopath in Nevada (we drove from Colorado) for help, but food allergy treatment for 9 months didn't help very much, since it wasn't food allergies.  What was great about our care there, is that they did electrodermal testing there, so we were able to find out many of Max's triggers.  In the 6 months after our first visit there, we eliminated all the triggers we hadn't already figured out, and we were SO sad to adopt out our dogs and cats.    The last two years has been an exercise in completely surrendering to keep Max safe...it's meant a lot of grief and compromise.  We've given up our social lives, our sense of normalcy, our old routine and we recently moved to be at a lower elevation, higher humidity and cooler overall climate in Western Maryland...but out of everything I've said goodbye to in the last two years, I probably miss my sanity most.  

We just found out about MCAD at the beginning of June, by pleading with everyone on my Facebook page to help us find answers...tons of friends reposted it, we have pages and pages of information folks shared with us, but ONE person reposted to a national forum for nutritionists and herbal professionals...and one person from THAT forum recognized our food list as histamine rich, and sent me a note about the possibility of histadelia and/or issues with mast cells.  In a matter of days I knew Max had MCAD.  We contacted our local primary care doctor, and she agreed with us, but as with the other professionals we saw, she had just put Max in a food allergy category.

SO, in the two months since then, we've arranged for our staff to run our business in CO, we've moved the kids to western MD, and we now have a contract on our house.  Living somewhere cooler, where we can slow down, have more time outside, and less exposure to chemicals (especially municipal water/traffic) seems to be working.  The only thing is that after dropping most meat/fish/and some fruits and veggies that were histamine rich, from our diets, we were losing ground...until we realized in the last few days that the foods that went UP to cover those calories are highly acidic in his system...rice, beans, berries...SO!  We are putting together our alkaline/low histamine diet to get him more stable.  We can use Benadryl for dramatic reactions, but even dye free allegra and claritin caused his skin to flare, presumably from the additives and preservatives.  We have our pure supplements we use, but Max's intolerance to so many chemicals is going to keep us away from most meds used for masto.  Even singulair has aspartame...ugh...with his sensitive nature, we have to be so careful not to load him up to start a MORE dramatic roller coaster effect of counter-compensating with drugs.  

We are currently buying all the fresh, local food we can and figuring out how to grow our own in a green house for the winter...since the freshest foods with the most enzymes, that haven't been compromised by shipping, etc is really what helps him.  We have him on daily 2X daily 3/4 teaspoon elderberry with 250mg quercetin, ambrotose (gut healing with aloe vera and wakame) once a day, 2X multi, 2X vit c, 3-4X chewable digestive enzymes ...and the alkaline/low histamine routine without allowing him to eat refrigerated leftovers.  We also are VIGILANT about his water (it's all our kids drink), and making sure he gets time outside (usually with his shirt off) for Vit D, some grounding energy and exercise.  It's literally a full time job to cook/prepare fresh food every meal and snack, plus monitor him so closely, but it makes a HUGE difference for him.  In the mean time, I'm emotionally eating all the time and drinking a bit of wine.  

Any holistic practices, supplements or nutritional suggestions/research would be really appreciated.  We are really OCD when it comes to research concerning Max's MCAD...and would love to hear what's working for others.  

Best,
Tiffany

Joan, thank you for responding!  We are going to try l-glutamine again...we were on a gut healing protocol for a while, and I don't think the glutamine was hurting, just not showing any particular help...we have tried probably a dozen probiotics, and each time, he gets terrible shiners and would get progressively worse...he has really acute sensitivities to dairy, soy, gluten, eggs...and nearly all histamine rich foods, so we have had a really hard time finding something that didn't exacerbate THAT whole game.  

We are seriously considering an elemental formula...something to supplement a group of basic building blocks of amino acids, so we know he's getting what he needs to synthesize the hormones and enzymes that may help to stabilize him a little more.  He's been on SUCH a limited diet for so long, and the more we eliminate, the more I wonder about his organ health, to keep him stable and growing!

Thank you for that suggestion...it reinforces the amino acid idea we've been kicking around the last couple of days..  
~Tiffany

The histame really could be helpful...we should look into it more!  Thank you for the suggestion!