Mastocytosis & nutrition

Hi all -
Just curious in reading comments... How do peeps realize they need to change their diet, etc. Many masto peeps seem to mention wheat/gluten/dairy free diets. I can tell I have some triggers w/food, does the Allergist come into play w/this?
Also, do many see a nutritionist?
Just curious ... Since all of this is new to me.
Feedback - please.
Thnx!

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Msauce, Its all according to how you react to foods. The strange thing about this disease though, is; that you could eat a banana everyday for 5 days, and on the 6th day have an allergic reaction to it! At least that has been my experience. I have been tested for so many food allergies and chemicals. Most come back negative, although my body reacts allergically. These are actually Pseudo-allergies. Weird, I know! I think it has more to do with Histamine levels being high at the time you comsume the food. At least that has been my experience. I would suggest looking at a list of foods that are low histamine, and be strict about it. Im still learning too, although it is going on 2 yrs.Right now, Im looking to add some natural herbs that lower histamine levels, and also ones that help with inflammation( Turmeric, Ginger, Stinging nettle and vitamin c,) just to name a few. I hope this helps some. I know how frustrating this all is. I hope this post finds you well today! :))

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When I first was diagnosed in May I went on the low histamine diet. Didn't feel any better and was putting on about 2 lbs a month. Was not happy about that. (Remember everyone is different so this is how I react) Finally went to a Dr. of Natural Medicine to help me come up with a diet I can handle. I am an an allergy free diet right now. (no red meat,ork, gluten, wheat, dairy, chocolate, fish, caffeine, sugar) After a while we will slowly introduce a few foods back into my diet and see how I do. But, as catpurr said one day you can eat bananas the next day you react.

I have also added quercetin into my diet which is a natural anti-histamine as well remember to take care of your bones so add calcium and vitamin D as well as C.

it is alot of work keeping track of pills, supplement, diets, health diaries, Doctors, appts. etc but remember.

You may have Masto but it DOES NOT have you. You are still who you are, make time to do the things you love. When I first was diagnosed I forgot who I was and what made me special. Well Masto guess what I AM BACK!!!!!!

Jo-

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msauce, You have asked the question of the ages. Like catpurr says, what was okay for you to eat your whole life is suddenly a trigger. It really keeps one guessing. As time goes you will recognoize changes in your body; flushing, threats of diarrhea and nausea, sweating, increased heart rhythm, and any other signals your body gives you that something isn't right telling you it may be time for the liquid benadryl. One piece of advice, alway keep liquid benadryl on hand. Get the dye free variety if you can. This can quash an attack before it sets in, but you have to recognize your body's signals to really benefit from this. Pay attention and you will most certainly learn them.
This is a crazy disease that seems to follow no real formula, so the onus falls to us to know our bodies. It seems like a lot of work, but you can do it. Work with your doctor to attain the correct formula for your medication; times of day, amounts, and don't let your prescriptions lag. You must keep up with the medications as well as watch for and learn your triggers. This is a disease that really keeps one on their toes.
My best to you and to all.
Dale

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Thank you both! I am at a loss at where to start with nutrition. Jo - did you start to lose weight after you became gluten-free, etc.? Just curious.
I am also starting a binder for my bloodwork, articles, etc. - this way, I can keep it organized and not feel overwhelmed, like I do right now. I am starting my food / feelings journal and can go from there.
It is nice to have this site, where I can just ask the question and don't have to feel judged like with my fam and friends are doing right now. I know they want to help... but they are not really helping.
Missy

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Hi Missy.

In the past if I was to eliminate all these things from my diet the pounds would have melted off. Not sure if its my age or that I am less active bow with Masto. I have only been on this allergy free diet since Nov. 25. have lost a few lbs but nothing earth shattering yet....LOL The benefit I have notice is the bloated stomach is shrinking and no more diarrhea so far, Yeh!!!!

Dale is right about liquid Benadryl too, I have used it a few times now when I have a headache that won't go away or stomach cramps that hit with a vengence! Its a great backup plan.

Dale where can you find dye free? Is that the children's variety?

Jo-

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Jo - Thanks for the info. My stomach is where I need the most help. I just want the weight off and to keep the triggers to a minimum. I will also look for the dye free Benadryl.
Thanks!
Missy

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Jo, The dye free benadryl is usually found at Target in the children's allergy section. As often as not it will be the house brand. It works just fine. Of course, the dose is one measuring cup full to make an adult dose.
My best to all.
Dale

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msauce,
I noticed issues w/ gluten, dairy, soy and other foods early on, before I was ever diagnosed w/ mastocytosis. I had testing through enterolab.com which came back positive and confirmed my suspicions. I removed gluten and dairy at that point, and noticed a positive change just from that. Because I react to so many foods, my symptoms did not 100% alleviate, but every little bit helps. - I did experience some major withdrawals for a good 3 weeks and minor withdrawals for about 3 months after eliminating gluten and dairy from my diet.

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I went on the antihistimine diet about 6 months ago because I had constant diahreah and pain. It didn't seem to matter what I ate. My colon is so swollen and stretched out 12 extra inches and is up under my right ribcage! The diet helped me tremendously, and I do drink liquid (Children's) benedryl at the first sign of trouble. I was afraid to go anywhere!
The diet has just a few foods you can eat, then you add food groups. Believe me, after eatting only the allowed foods a few weeks, you really KNOW when you just ate the wrong thing! I am fine with gluten. Many people are. I can't eat anything in the spinach family, which I love. but then, my stomach doesn't hurt! So it's worth it.
You can't go by what anyone else can or can't eat. We were told at the conference that it is really a food sensitivity. You can place the food in your cheek five or ten min. and see if you have a reaction. I haven't done this. I pretty well know now what I can eat and a GI upset is very rare. It was a miracle to me to determine these foods. I hope this helps.

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My husband is severely disabled and has a lot more going on than just a gluten intolerance, but he is 100% better after going on a gluten free, casein (dairy) free diet. He has so much going on that doctors haven't been able to give me a diagnosis but it was by trial and error and tons of research that led me to try a GFCF diet. Let me just say a gluten free diet is very complicated as gluten is in things you would never think of... catsup, toothpaste, lipstick, french fries. If you have a severe intolerance, you have to be very careful! My husband had a bad night after eating french fries. I found out from a Red Robin site, of all things, that French fried have to be cooked in separate oil, as there can be cross contamination if cooked in the same oil as chicken fingers or onion rings. It surprised me that one person could eat bananas some days and not others. I have not found that to be true. If I am VERY careful and not let any gluten sneak in, my husband consistently does well on the few foods he is able to tolerate. Just some advice... if you're going to try GF, you'll have to check everything you eat... even things you might not think have gluten. Hope this helps. I would suggest carefully monitoring how you feel after everything you eat. Good luck!

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