Systemic Mastocytosis

I was recently diagnosed with systemic mastocytosis...it was mentioned to me that I should be on a low histamine diet...if anyone has any information on this diet please share.

Thanks.
SuzyBear

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Suzy, I'm Alexia and I was diagnosed 1 year ago with SM too. I follow the low histamine diet when my SM is flared or when I'm not on Gastrcrom. It's a tough diet to stick to but when I had Urticaria, I went on the diet and it started clearing up immediately.

Below I have listed a few links. I believe most masto sufferers use the Urticaria Pigmentosa site, it has a lot of good info.

Then I have added another link to recipes that are low-histamine.

So I'm always interested in other people's meds list...so I'll list mine here in case you're interested:

200mg Gastrcrom 4x daily
50mg Benadryl 4x daily (I back off when I'm feeling good)
10mg Elavil (helps with abdominal pain)
150mg Zantac 2-3x daily
Then sometimes I take a smooth muscle relaxer and that helps with intestinal pain.

I just joined this forum and I already love all the people because I am finding that no one understands this disease, even my greatest supporters. They just don't get it like you all do!

Low Histamine Diet:
http://www.urticaria.thunderworksinc.com/pages/lowhistamine.htm

Recipes:
http://top8free.com/hidden-allergens/histamine-avoidance-list/

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Oh, and I should also note, that next time I'm buying the dye free Benadryl. I'm not sure why Benadryl would even use a dye in their meds, seems a little contradictory to me. I also use dye free sent free soap, detergent just in case.

Can't wait to hear more from you. I hope you are feeling better now that you have a diagnosis. Please write anytime!

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Hi Suzy, and welcome to masto,sorry you are having to learn about this disease.
I am new to the board so I have not been on here much.
Alexia, thanks for these sites. I did not know of these. Do you think the Gastrcrom helps a lot.

I have had S. M. for years and still don't know any thing about it. My Dr said he might start me on Gleevac.

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Hobo
I don't know your symptoms but if you have a lot of stomach issues I think Gastrocrom is worth a try.
Especially before you try Gleevec....
Gastrocrom doesn't work for everyone and is very expensive if you do not have insurance. I have had great results with it.

I know we are alll different and react differently but you never know what might work on you.

Good luck!

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catdani,
thanks for the reply.i will ask my Dr next week when I see him about the Gastrocorm. Any more advice is appreciated
Hope everyone has a great day.

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Hello Hobo, For me Gastrochrom has been a life saver. Before it I was having an attack every 2 to 3 weeks sending me once again to the ER by ambulance. I even used my epi pen the last 6 times. Since being on the Gastrochrom I've had some flare ups but nothing a couple more benadryl didn't take care of. If you have as part of the fun severe gastric flare ups, I would look into it. It is very expensive. I thank God for insurance. My best to all. Dale

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thanks CSIII,

I had to pick up other meds. today so I ask the pharmacies

The difference between the two and he could not tell me. In fact he had never heard of the Gastrochom,asked if it was a new drug.

Sounds like I will not get much help there.He said that the Gleevec ( his price) was $7,000.00. I don't think i will be getting any of that gold.
I will talk to the Dr next week and let every one know.
thanks

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Gastrocrom isn't new but it isn't a common drug either.
I had trouble getting the amounts I needed from Walgreens. I use my mail order pharmacy through my insurance company. It takes a few days. They told me there is a couple of places in the U.S. that they pull Gastrocrom from so it takes a few days.

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BAD FOODS FOR MASTO and see here to see why: http://www.allergynutrition.com/
Some but not all of the foods to avoid: cheese, yogurt, buttermilk, artificial colours, artificial flavours, preservatives, alcohol, packaged rice and pasta; commercial salad dressings;all fish and shellfish, processed meat; prepared dessert fillings, prepared icings/frostings, cake decorations, confectionairy, commerical candies; all chocolate and cocoa, flavoured gelatin, mincemeat, prepared relishes, olives, soy sauce, commerical ketchup, gherkin pickles - see web site and/or book at the above site for complete list.

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Just this week we decided Ariah should be on a low histamine diet. It is going to be tough but I am hoping it will help. She is currently only on benadryl but it doesnt seem to do anything. When I asked her Dr. About Gastrocom he told me he would NOT prescribe it. I don't even know what to do with her illness anymore.

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Hi, this is SuzyBear I am feeling pretty miserable these last two weeks, something is going on with my bladder, pelvic pain and overall just not feeling "right" in this area....anyone else have this problem with their Masto?

Fortunately I have a scheduled appt with my doctor this coming Tuesday...but for now...not up to par.

Wanting to feel better,
SuzyBear

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Suzi
I hate to tell you but that "just not right" feeling is what most of us go through.
Last week was a bad week for me. I thought at one point I was having a heart attack. I had my Dr appointment this week and all my bloodwork except for my Tryptase was great.....so then you feel like you are crazy on top of it!
I hope you feel better soon.

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I just read that Gastrocrom is not recommended for under 2 years. here's the link - it may help answer some questions.
http://www.drugs.com/pro/gastrocrom.html

Also here's a link on the drugs for Mastocytosis. It has helped me understand why I'm not on them and others are.
http://www.drugs.com/condition/systemic-mastocytosis.html

Finally, i'm feeling tired for a change. Good night everyone. -Mel

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September 15, 2009
I am so frustrated. I just came back from my doctors appointment. I have been having pelvic pain and my doctor said that, that would NOT be part of my masto. Then she decided that I should go to urology for a biopsy and that they can tell if there are too many mast cells (she said it would be very rare, and she doesn't have any patients that have that). It seems to be from being on this blog that it is not that uncommon. Those of you with pelvic pain did you have to do the biopsy?
I am also having one of those times with bone pain. miserable.
This is one strange disease. I pray for all of us to get well!
SuzyBear

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Low histamine diet is unimportant in this syndrome since the histamine ( and prostaglandins ) are coming from your own Mast Cells, not from your diet. Of course, your diet may contain Mast Cell stimulating allergens. I prescribe zyrtec 10 mg a day (H1 blocker), ranitidine 150 mg twice a day (H2 blocker), and celebrex 100 mg twice a day ( cox 2 prostaglandin blocker which preserves cox 1 stomach protection).

David Gordon MD
family practice, kaiser permanente

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Thank you Doctor for the meds and explanations. The clelebrex is new to me. I am seeing my allergist in a couple of weeks and will mention this to him. Each time I see him we are exchanging new things we have learned about SM. It seems funny to be educating a doctor, but this is the way we both learn. I will admit that he has been researching diligently and has not given up. He is the first doctor that I have been to that is willing to do the research and the reaching out to other doctors to learn all that he can. It's just that there are not that many doctors out there that have any experience with this. Thanks again for your posting. Please don't be a stranger. My best to all. Dale

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Dr. Gordon, you mean the no fish, no chocolate bars, cocoa and citrus fruit, nuts...really isn't necessary to cut out of my diet. That would be wonderful.
Do you have any masto patients with pelvic pain that comes and goes, do you think that it was just a "bone pain" like I have in other parts of my body.

Is anybody going to the conference in New Jersey October 1? I am and would enjoy meeting you all.

SuzyBear

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I was wondering if we would have a response from a doctor one day and here you are! Thanks for sharing your knowledge and it helped my understanding of prostaglandins a bit more. Do you know if ibuprofen does the same thing as celebrex? I take daily a 300mg Ranitidine, 180mg anti-histamine (telfast), 400mg ibuprofen for pain when I need it and Vitamin D with Calcium (very important). I also take additional vitamins (C and Curcumin Forte), stick to a low-histamine diet and exercise for the sake of keeping my immune system healthy and bones strong. I do find whenever I venture to histamine enriched foods/triggers I have pains and take days to recover. As you can see, I'm a big believer in a low histamine diet. Surely not adding to what the body is producing would benefit don't you think? Would like to hear your opinion and thanks again for posting!
SuzyBear, I'd like to attend the conference, but I'm in the land down under!
All the best everyone, - Mel

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I would have loved to gone to the conference! My husband couldn't get off of work and I would have had to travel on my own.
Plus we have to take one of my twins to St. Louis Children's hospital a few days after and that would be a lot of travelling in a weeks time.

If anyone goes I would love to hear about anything new they learn. I thought there were going to be some great topics.

I had a work retreat weekend. Stayed at the lake. The rooms we stayed in are older and the one we stayed in had mold. So, set off my masto! Didn't matter what meds I took I was miserable. (I have a severe allergy to mold) Now I feel like I am coming down with a sinus infection!

I do find it interesting about the diet. I do find there are times things that they are saying to avoid don't bother me. (ie.. chocolate) Other times it causes a flare up.....odd and crazy! I am tired of wondering how I am going to feel everyday!
I hope that everyone had a symptom free day even if I didn't!!!!!!!!
Catrina

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Ibuprofen blocks the prostaglandins coming from your mast cells but also blocks the prostaglandins that your stomach lining makes to help the stomach mucous buffer the stomach acid. Celebrex preserves stomach prostaglandin production. This is even more important because the histamine from the mast cells stimulate stomach acid secretion. The special diets are for eliminating protein allergen that stimulate mast cell histamine release, not to avoid food histamine exposure

David Gordon MD

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