Down to three basic foods

[Waverunner]

Waverunner

No I haven't I don't think I fit the symptom list?? No rashes, hives etc

maryb: Yes, till yesterday I thought the same but systemic mastocytosis doesn't require any skin symptoms at all. I checked a mastocytosis forum and lots of people with the systemic (not the skin type) form of mastocytosis seem to suffer from extreme intolerances to food. Rice, potatoe, meat and a few veggies, that's all they tolerate but even these foods cause problems.

 

[maryb]

Heck well then maybe I do then? That diet is about the same as mine.

 

[Waverunner]

It's worth a try. I try to get tested this week. The easiest tests are serum tryptase as well as 24h n-methyl-histamine.

 

[maryb]

Waverunner
ha - easy? in the uk? you jest

think I've just read on another thread someone asking where they can get these tests in the UK - I'll have a look around tomorrow morning when I've got more brain clout.........

 

[Waverunner]

Waverunner
ha - easy? in the uk? you jest

think I've just read on another thread someone asking where they can get these tests in the UK - I'll have a look around tomorrow morning when I've got more brain clout.........

It's the same here but I think I found a lab for tryptase. I'm gonna call them on Monday. The n-methyl-histamine is a little harder

 

[Waverunner]

maryb: I looked through my files and found a tryptase test from 2011. It was normal/low I guess if you want to know if you suffer from mastcytosis it's easier to take some h1 + h2 antihistamines, as well as some cromoglycic acid + low histamine diet and see if things improve.

 

[camas]

maryb: I looked through my files and found a tryptase test from 2011. It was normal/low I guess if you want to know if you suffer from mastcytosis it's easier to take some h1 + h2 antihistamines, as well as some cromoglycic acid + low histamine diet and see if things improve.

Hi Waverunner,

Pardon me for butting in , but according to Dr. Afrin you can have a normal tryptase and still be suffering from mast cell activation. Here's what he says in his latest writings that I link to in my signature.

Given that MCAS is a relatively non-proliferative disease, most patients in this
population present with normal serum tryptase levels [48], even during symptomatic flares of disease; a minority of patients will manifest slightly elevated levels (below the twice-upper normal limit in the WHO criteria), and an occasional patient will manifest a level which is inconstantly slightly above the threshold in the WHO criteria. As previously noted, a recent consensus proposed recognizing modest elevations in serum tryptase during symptomatic flares (20% above baseline, plus an additional 2 ng/ml) as demonstrative of mast cell activation, but the validity and clinical utility of this calculation have not been specifically studied. [42]

 

[invisiblejungle]

I have had a terrible time. Started at 14 and went on mainly rice diet. NOW to find there are high level sof arsenic in rice. I have symptoms (fibrosing of hands, rash, etc) and have had to go off rice. This leave me with:

Yogurt
Chickpeas
Bananas

That is what I live off of now. I sometimes eat sardines and sometime eat Hemp seeds for protein. I drink olive oil for calories.

I can still eat veggies, but only the organic salads and cabbages. I cannot eat carrots anymore or onions. I can eat garlic.

Sometimes I can eat an orange or an apple.

It's so hard. I do take methyfolate and hyroxyB12 but only a bit as my potassium has gone down and thyroid became sluggish.

Anyone else down to three or less major foods? It's so hard!!!!

Hi OkRadLakPok,

Did you stop eating rice because of the arsenic, or because it was giving you trouble?

If it's because of the arsenic, there are a couple options. White rice has the bran removed, which eliminates most of the arsenic.

I actually buy brown rice from http://www.massaorganics.com/. The arsenic in rice is mostly from 2 sources: the farmland having been previously used to grow cotton, which used arsenic-based pesticides, and from using chicken poop as fertilizer, from arsenic-fed chickens. The rice from Massa is grown on farmland that has never been used to grow other crops (it was for cow grazing), and they don't use chicken poop as fertilizer. Brown rice is one of my main foods, and I feel safe eating Massa's rice. Plus, it's the best-tasting brown rice I've ever had.

 

[Waverunner]

Hi Waverunner,
Given that MCAS is a relatively non-proliferative disease, most patients in this
population present with normal serum tryptase levels [48], even during symptomatic flares of disease; a minority of patients will manifest slightly elevated levels (below the twice-upper normal limit in the WHO criteria), and an occasional patient will manifest a level which is inconstantly slightly above the threshold in the WHO criteria. As previously noted, a recent consensus proposed recognizing modest elevations in serum tryptase during symptomatic flares (20% above baseline, plus an additional 2 ng/ml) as demonstrative of mast cell activation, but the validity and clinical utility of this calculation have not been specifically studied. [42]

Thank you, camas. That's interesting. I still try to get the n-methyl-histamine test but I also will try the treatment approach.

 

[Misfit Toy]

Foods are a big problem for me, too. The more you avoid, the more problematic it will get in the long run. It's the same with fructose malabsorption, the current treatment is to stay away from fructose but your body will tolerate less and less amounts. I wish I could name solution, but I can't. The present medical knowledge sucks and is not advanced enough to offer anything except anti-histamines and cortisone, but both do nothing for me.

Yes. Years ago I was put on the low histamine diet. At the time, to my knowledge, I had no food allergies. None. Then after 4 years of not eating tomatoes, milk, wheat, soy...I became allergic to all of those foods. I have not been able to eat those foods since and that has been since 1997. The longer you stay away from foods you WILL become allergic to them. If I could go back in time, I would have continued eating pizza.

I am so sick from food allergies more than anything else. I am like you. If I eat, I get sick. As long as I don't eat, I am okay. It's not normal.

No matter what I try, food drops, avoidance, I remain sick from eating these foods.

I am now convinced, and I could be wrong, that food allergies and whatever reason they start, is what has brought on my Fibromyalgia, my GERD, headaches, and IC. ALLERGIES.

The whole mast cell thing; I am on Klonopin and have been for years. I have been on antihistamines for years- I still have major and massive problems. In my opinion, even if it is mast cell activation, what difference does it make?? I have been doing those treatments for years. No improvement.

Anyway, I am sorry you are down to 3 foods. You are not alone. I completely understand. If only I could just down soup everyday and have that sustain me. Like MaryB said; I would like to just be able to go to a friend's house and not have to bring my food.

I am too freaking sick, tired and in pain to cook constantly and make these crazy meals for my "special needs diet."

 

[maryb]

The Spitfire
think its hard for others to appreciate how hard each day is for us, as soon as I get up I have to think what am I going to have to eat? It wears me out just thinking about it.

The best time for me was going away for a month earlier this year - I didn't sleep but it was lovely not having to cook. Very expensive way of living though!!!!

Need to win the lottery and employ a cook - oh heaven......

 

[Waverunner]

Yeah, it's kinda funny how an elementary thing like eating food can become such a huge problem. I guess not many people know what this means.

 

[Misfit Toy]

Food for me is life or death. Of course we already know that, but what I mean is; a few days ago I went to a friends for dinner. They had gluten free food for me but they bought jugs of ice cream in. Well, what is the one thing that I am addicted to? Sugar. After this fabulous meal, I decided very stupidly to have 2 tablespoons of ice cream. I am super allergic to milk and lactose intolerant.

About an hour after eating this, I became super hyper. This is the norm for me when I am having a food allergy. So anyway, super hyper and then boom, diarheah. Will never spell that word right. I give up. Anyway, my intestine went nutso but then I am crawling out of my skin. I couldn't sleep the entire night. I was SO SICK. Then yesterday, I was unstable, crying and then what really happened? My fibromyalgia went nuts. I am in so much pain. SO MUCH PAIN and crying and feeling unstable, like I am going to have a panic attack. Food causes so much inflammation in my intestine that my whole body hurts.

I am now on a Fentanyl patch. A narcotic. My ears are ringing. Food for me is no joke. I feel like food allergies or intolerances could kill me. The pain alone and the whole body illness makes me want to end my life. I can't deal with it.
I am realizing, I can't cheat. Not one bit. I have to not have milk, or anything with milk. I cannot have gluten or tomatoes, or I will be on deaths door. At least 2 times a week I have a reaction like this. It makes me sick for 2 days.

So, out of 7 days a week, I am sick for 4 days out of a week due to foods. It's no joke. None.

I want to look into the GAPS diet. The soup broth to heal your gut, because my gut is a mess.

 

[Waverunner]

@Spitfire: I feel so sorry for you. This ll sounds like a bad joke but it's reality. What I'd be interested in is, if you have tried lactose free milk. I bought some lactose free milk today and I will try it on Wednesday. The question is, if we are just intolerant to lactose or if we are intolerant to the other constituents of milk as well. The latter would be really stupid but it wouldn't surprise me.

 

[maryb]

I'm intolerant to casein so all milk is out for me, not intolerant to fructose or lactose - crazy illness.....

 

[Waverunner]

I'm intolerant to casein so all milk is out for me, not intolerant to fructose or lactose - crazy illness.....

It's like the intestine gets dysfunctional all over and reacts to nearly everything.

 

[maryb]

It's like the intestine gets dysfunctional all over and reacts to nearly everything.

that sounds like me!!!

 

[Waverunner]

Lactose free milk is a lot better than normal milk but I still get problems...

 

[waiting]

As an ice cream substitute... here's a recipe for coconut ice cream (tested and vouched for by me!) ... we've likely all had our fill of recipe books, desperately looking for something we can eat... this recipe is by Julie Daniluk, a Toronto nutritionist. I substituted agave syrup in place of honey.

http://books.google.ca/books?id=FmX...X&ei=Tk3LUc_NK4mRrQGeuoCoBQ&ved=0CC4Q6AEwAjgK

 

[nanciswell]

One does not have to show symptoms of masto to have problems with mast cells .. I am like you with only six things i can eat.. I can eat butternut squash, golden delicious peeled apples, maybe pears/ barlett only peeled , white sushi organic rice, and deskinned fresh only organic chicken . THe chicken I have to have two caps of sacc boulardii before the meal to help with the amines in it.. Sacc b is a mast cell stabiliser.. I found this website helpful .. www.failsafediet.wordpress.com which discusses being a super responder like us. I also follow salicylate diet .. www.salicylatesensitivity.com plus histamine .. I believe our mast cells are being triggered by not only food but as well bacteria and virus in our guts..