The short answer:  NO

The story:

On my 1st visit the my allergist he said: you are just getting stable after 8 months so just keep eating what you are eating and we'll deal w/ your diet as you get more stable.

4 months later I asked about a nutritionist and he didn't have one to recommend to me. I found my own and NO insurance doesn't cover her unless I have diabetes.

What I like about this woman:
1. she researched MCAS as much as she could BEFORE I arrived
2. she had a list of "no no" foods for us to go through, realizing that I probably had already been through this list but still, I was impressed
3. She didn't freak out over my diet (which is really limited still) but just told me her two areas of concern: vitamin D and calcium.
4. she noticed I paid cash and offered me 30 minute apts rather then the full hour and said she'd look into how much calcium I get in my bone broth and broccoli and we'd work on the rest as spring comes because winter is a big trigger for me (I'm pretty sure).

I think, if you can get to ANYONE who has a good grasp on nutrition, even you can say: "okay, what do I need to add" and then experiment w/ the foods. That really was my only goal- but this woman exceeded my expectations- so that was a bonus!

Kelley

PS- I only use Duck fat right now for cooking. even olive oil seems to be a problem. I might be a be able to tolerate small amounts of lard and tallow. I know chicken fat is okay too.

Hi Kelly,

Thank you for responding. Did your doctor's "no-no" list look at all familiar to you? I know that there are several on the internet. Some of them have conflicting information, too.

Did you start with an elimination diet and build up? Did you test for any salicytic sensitivities, too?

Thanks!

So the link Spartako posted is for high histamine foods that are likely to trigger mast cells? I went through it, and personally would say that I have more issues with salicylates than I do high histamine foods, though some foods definitely cross both lines.
Ladybug, I'm not sure if most people (mast cell people that is!) tend to be more sensitive to one over the other. It 'seems' to me that a lot of people have benefited from a low histamine diet. But for me, it seems to be more salicylate. Maybe that's because my primary condition is autoimmune urticaria, I don't know. I know on the urticaria society website they encourage trying a low sal diet, but if I remember correctly, they don't mention low histamine, but I could be wrong

I know a low sal diet is strongly recommended for fibromyalgia patients.

My doctor (and I really don't have "a" doctor guiding me through this anyway) isn't on board with the food sensitivities either. He is not up on current research nor pseudo allergies. He only believes in IgE allergies of which I have none. Grrrrr......
And, like you, I deal with angioedema. I used to get hives, but, knock on wood, I haven't had them in years.
I would definitely look into avoiding salicylates. I am 100% certain that they are major triggers for me, and they hide in EVERYTHING!
If you're going to try avoiding sals, make sure you watch out for topical moisturizers, makeup, deodorant etc., as well as cleaning products, supplements and medications, and of course food. I have by no means figured it all out yet, but I have done quite a bit of searching, so if you want any tips, hopefully I can help. You can always send me a personal message!
Good luck!
By the way, I have finally come to terms with the fact that I cannot tolerate any vegetable, fruit, plant oils at all. It's a bummer. But staying away from them helps a lot.
And.....I am with you on the weight gain. I have gained loads since I became really symptomatic 4 years ago. Between the depression/anxiety drugs and the antihistamines I think my metabolism has completely shut down too bad I couldn't tolerate cromolyn, for whatever reason that stuff completely takes my appetite away. Not sure if this is typical, but the two months I was on it I lost 15 pounds. I have since gained it all back

I did not know about the english pdf but I can read german.
The list is for high histamine food but has a column with an L for possible trigger foods.
The translated pdf is better than google translator:
http://www.histaminintoleranz.ch/download/SIGHI-FoodCompatibilityList_HIT(EN).pd...

MCAS, Histamine Intolerance and Salicylate Sensitivity are different diseases but you can have all.
Salicylates are also a trigger for my mast cells but it is possible that there is another form of a pure Salicylate Sensitivity without MCAS:
http://en.wikipedia.org/wiki/Samter%27s_triad#Cause

MCAS can be caused by different mutations in mast cells which results in different chemicals and molecules which trigger our cells.
The best list for salicylates I found:
http://salicylatesensitivity.com/about/food-guide/

Apparently Salicylates are in almost every vegetable and fruit but the amount is essential. There are also reports of getting more sensible if reducing salicylates to a minimum. So it is suggested to only avoid food with high and very high salicylates.

Histamine itself can be a problem when DAO is to low but it also can be a trigger in some. And even people with high DAO can get problems with to much histamine (food poisoning, china restaurant syndrome). This histamine would add to the histamine from our mast cells.

Eating low histamine is quite easy. Other mast cell triggers limit the food a lot: Egg white, gluten, caseine (Cheese, Milk), pork(?), malt, nuts, tomatoes, spices, glutamate, colorants,...
But with salicylates it gets horrible because it restricts most fruits and vegetables.


The best may be to make a failsafe diet like http://failsafediet.wordpress.com/the-rpah-elimination-diet-failsafe/
But it needs so much dedication...

I also tried an aspirin desensitization but it did not work. I am considering do try it again because I made the mistake to start with Enteric Coated Aspirin. I actually do not know where I found the procedure but I believe it was in some papers of Dr. Afrin.

Wow, that FailSafe diet is pretty strict. I noticed that a few items that are low in histamine are listed as no-no.

I see that I will need to keep a food diary --- especially after last night. Just before going to bed I was as sick as a dog vomiting for hours.

Shame on me, but I ate 3 items that I have not eaten in a while (the devil made me do it). I ate a baked potato, some white potato chips and had a gluten-free brownie.

Everything else in my day was the usual low-histamine, GF and casein free foods and beverages.

Could eating any or all of these 3 items cause me getting sick? I'm half tempted to eat those items again to see if the same thing happens. No . . . not really. But I do wonder now.

This is interesting, but also exhausting. My heads spins with all that there is to learn and grasp. Thank you all for being such a great help with this!

Thanks Joan! I certainly didn't mean to say that ladybug has the same triggers as me, I just wanted to let her know that sals hide in everything!  . But we are all different and not all sals bother me and a lot of things trigger me are not on the sal list; but mostly I am salicylate intolerant. I'm still very much in the process of figuring out my triggers.
I was laughing at you comment about getting over confident and eating something you know you shouldn't! (And paying the price!!!)
Brigitte