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Mast Cell Activation Syndrome (Mcas)
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Glad you had a good appointment...those really can help to lift spirits.

My safest foods are chicken and all green veggies except peppers. I currently eat all meats, only fresh caught fish (hubs likes to fish - worked out well when we learned the hista nonsense), most veggies except those with high histamine or nightshades, a small amount of rice or one slice of gluten-free bread...can't do the ones with soy...per day, lots of almonds in all forms, coconut oil, salt and black pepper (recently found out black pepper was HH, but have not removed it or my red wine. the strange thing is i can drink red wine without issue which is crazy but i try not to question it. coffee, nettle tea, red wine and lots of water are my beverages. oh and recently got small quantity of egg...not sure if its because i switched to a fresh source and can eat two a day and also no problem in baked goods...i make a breadlike substance with apples, coconut and almond flours, eggs, vanilla and cinnamon...kinda tastes like an apple cinnamon muffin -- emphasis on the "kind of" ;)

That's funny...my husband was just saying that he needs to become a better fisherman to feed me. He doesn't get much time to between work, the kids and coaching soccer...but I would welcome some fresh fish!

Your bread like substance sounds good to me...but then again I'm hungry. Lol! Would you be willing to share the recipe when you have time?

Thanks

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I feel like I have found family in this forum!!! I can't even begin to describe how amazing it felt to read the previous 9 pages of posts and realize that I am not alone! I am in the beginning of my journey and have found the internet to be a helpful, but scary and overwhelming place, when it comes to research. I was recently diagnosed with Mastocytosis. My only symptom at this point is urticaria pigmentosa (skin rash - looks like red freckles). I am of German and Irish decent, so I am no stranger to freckles! Sadly it makes people stare and kids ask questions and provides a general uncomfortable and self conscience feeling :( I don't like to wear a bathing suit or shorts and even tank tops make me a little uncomfortable. 

 

Reading through forums and low histamine vs. paleo vs. gluten-free ..... Agh! I am overwhelmed. I am getting the 24 hour urine test and the blood test done early next week, so I am sure that will tell me more. The thing is, I am not having outbreaks or harsh reactions like anaphalaxsis  (sp?). How can I tell if I am reacting to something?

 

I started gluten free earlier this week and don't really feel a difference yet. What I am getting pretty frustrated by is conflicting info. Alcohol is a no-no accept that it also acts as a histamine liberator. But I love wine and martinis. :wub: Meat in the fridge is constantly building histamine, but here is a slow cooker recipe. Where to start? :huh:  I am thinking of going strict gluten free and continue taking my prescribed Singular, Zyrtec, and Benedryl and add in 1,000 mg of Quercetin, 500 mg of Bromelain, 500 mg of Nettle Extract and 1,000 mg of vitamin C a day. If I do not notice any changes with the urticaria, I am thinking of trying histame  or a natural hives cure or get rid of hives. I am trying to be patient, but that is not one of my virtues. I am curious though as to how I will 'see' or notice results if the rash doesn't go away. Will the rash go away if I stay gluten free? Is 30 days long enough to give any of the mentioned methods a shot? How do I know if my histamine levels are safe? Will a tanning bed help the urticaria symptoms? Doc mentioned PUVA therapy, will the tanning bed do the same thing? 

 

There are so many fantastic gluten-free websites with recipes that satisfies my foodie soul. ibreathimhungry.com is awesome. So is iowagirleats.com. Skinnytaste.com has some good gluten free recipes too. I have made dozens from each of these and have yet to be disappointed. Iowa Girl kills the Chipolte Burrito Bowl copycat! 

 

Anyone else have Mastocytosis? Does it get worse or can I coast along if I manage properly? 

 

I'm sorry for the wordy post. Just. So. Many. Questions.  :)

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I feel like I have found family in this forum!!! I can't even begin to describe how amazing it felt to read the previous 9 pages of posts and realize that I am not alone! I am in the beginning of my journey and have found the internet to be a helpful, but scary and overwhelming place, when it comes to research. I was recently diagnosed with Mastocytosis. My only symptom at this point is urticaria pigmentosa (skin rash - looks like red freckles). I am of German and Irish decent, so I am no stranger to freckles! Sadly it makes people stare and kids ask questions and provides a general uncomfortable and self conscience feeling :( I don't like to wear a bathing suit or shorts and even tank tops make me a little uncomfortable. 

 

Reading through forums and low histamine vs. paleo vs. gluten-free ..... Agh! I am overwhelmed. I am getting the 24 hour urine test and the blood test done early next week, so I am sure that will tell me more. The thing is, I am not having outbreaks or harsh reactions like anaphalaxsis  (sp?). How can I tell if I am reacting to something?

 

I started gluten free earlier this week and don't really feel a difference yet. What I am getting pretty frustrated by is conflicting info. Alcohol is a no-no accept that it also acts as a histamine liberator. But I love wine and martinis. :wub: Meat in the fridge is constantly building histamine, but here is a slow cooker recipe. Where to start? :huh:  I am thinking of going strict gluten free and continue taking my prescribed Singular, Zyrtec, and Benedryl and add in 1,000 mg of Quercetin, 500 mg of Bromelain, 500 mg of Nettle Extract and 1,000 mg of vitamin C a day. If I do not notice any changes with the urticaria, I am thinking of trying histame  or a natural hives cure or get rid of hives. I am trying to be patient, but that is not one of my virtues. I am curious though as to how I will 'see' or notice results if the rash doesn't go away. Will the rash go away if I stay gluten free? Is 30 days long enough to give any of the mentioned methods a shot? How do I know if my histamine levels are safe? Will a tanning bed help the urticaria symptoms? Doc mentioned PUVA therapy, will the tanning bed do the same thing? 

 

There are so many fantastic gluten-free websites with recipes that satisfies my foodie soul. ibreathimhungry.com is awesome. So is iowagirleats.com. Skinnytaste.com has some good gluten free recipes too. I have made dozens from each of these and have yet to be disappointed. Iowa Girl kills the Chipolte Burrito Bowl copycat! 

 

Anyone else have Mastocytosis? Does it get worse or can I coast along if I manage properly? 

 

I'm sorry for the wordy post. Just. So. Many. Questions.  :)

 

Welcome!  I can't answer most of your questions, but wanted to check...were you ever tested for Celiac Disease?  You need to be tested before removing gluten as the antibodies that are tested for are produced only in response to gluten consumption!!!

 

I know on the FaceBook Mast Cell and other internet Mast Cell forums there is a much larger mix of folks with Mastocytosis and other Mast Cell disorders...have you found some of those helpful?

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Welcome!  I can't answer most of your questions, but wanted to check...were you ever tested for Celiac Disease?  You need to be tested before removing gluten as the antibodies that are tested for are produced only in response to gluten consumption!!!

 

I know on the FaceBook Mast Cell and other internet Mast Cell forums there is a much larger mix of folks with Mastocytosis and other Mast Cell disorders...have you found some of those helpful?

Thanks, Lisa! I tested negative for Celiac, but my doctor (who thankfully doesn't insist on cramming me full of meds) said that autoimmune disorders such as mine may benefit from a gluten free diet. This along with vitamins and only 3 prescriptions a day should help control the Mastocytosis. 

 

I will check out the Mast Cell forums. The only reasons I haven't found these helpful was the reactions and disease progression seems to be much further along than mine. 

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Thanks, Lisa! I tested negative for Celiac, but my doctor (who thankfully doesn't insist on cramming me full of meds) said that autoimmune disorders such as mine may benefit from a gluten free diet. This along with vitamins and only 3 prescriptions a day should help control the Mastocytosis. 

 

I will check out the Mast Cell forums. The only reasons I haven't found these helpful was the reactions and disease progression seems to be much further along than mine.

Mine is pretty far along as well.

Good luck to you :)

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Is there a way to tell MCAS apart from sulfite intolerance? I have been suffering from skin burning and redness these past few months (and chronic hives since my celiac diagnosis a year and a half ago) which were made worse by a bad reaction to antibiotics. Now my face and neck feel sunburnt when I have high histamine and high sulfite foods. Seems the lists of foods to avoid overlaps quite a bit. Any idea on how I can figure out which one is affecting me?

Also I am seeing a new allergist on Tuesday. Not sure if he will take the MCAS questions seriously but other than printing out the research do you guys have any tips on how to properly approach the subject? My previous allergist just told me to wait until the end of summer because heat was making my skin sensitive and did not consider MCAS as a real issue.

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    • Thanks, I'll check that out. I may have to apply for my own Medicare card in order to get any kind of coeliac-testing done beyond the screen (see above post.)  No, nobody has even mentioned it. I'm unsure if my doctor knows that I do not need to use my hands to vomit, or if she knows about the involuntary vomiting.  I have a part time job at McDonald's and make around $150 per week, which is how I afford to smoke. Mostly, I spend my money on (generally gluten-containing) binge food and cigarettes. I did attempt to start saving money, but then my shifts were cut at work - which meant I had more time to study, but no money, which was kind of pointless. It's complicated. Here in Australia, cigarettes are $25 per pack. These aren't fancy cigarettes either, just your run-of-the-mill Marlboro 20s. Thanks for caring. I am trying to stop I've had the vomiting thing all my life, way before I started smoking. And no, I'm not sure. I know he had an endoscopy and the flattened villi, but I'm not sure if he got a blood test - I assume he would have done, don;t know if it was the full panel. Supposedly he has this FODMAP thing, which I'll admit that I know next to nothing about. Interestingly, people who have to follow low-FODMAP or no-FODMAP diets can't eat gluten either, so there's that. 
    • Would a coeliac screen be the same as a test for antibodies, then? I have no idea why it was even included in my list of tests. It could be my brother, or my symptoms, or both - regardless, I can't say I know too much about the testing.  It's possible that my brother has coeliac disease, I really do worry about it sometimes. He was told to follow a strict low-FODMAP diet by his doctor, and eventually my parents stopped caring. Occasionally they will remind him not to eat things like pasta, greasy foods, etc. because of his condition, but by and large they don't care. He basically just eats whatever he wants. I'm not sure if it affects him or not. However, he isn't shorter than other family members - my dad is 183cm, and my brother is 178cm at the age of 14. Our mother is 173cm.  I do think I have bad digestion, yes. I get gassy and very bloated often, as well as constipated phases (and then following that, diarrhea phases.)  I have tried to ask my mum to call the doctor to get the tests done, but I'm hesitant to mention anything to do with gluten as I know they won't believe me, solely because a good friend of mine has celiac disease. I know they'll think I'm doing it for attention, or to be trendy, when in actual fact I'm just tired of being sick and having no explanation for it other than diet. I'm positive it's not dairy, as I was vegan for a couple of months at one stage. When I went back to eating animal products, I had no issues whatsoever. 
    • He had the IgG ELISA done as well as other blood panels, fecal and saliva tests. He is on an elimination diet right now where foods that score above 0.2 are eliminated for 2-6 months depending on the score, then added back slowly after the detox period.  I am aware that there is a lot of controversy over the IgG, and I'm not here to go into that issue, but I can say with certainty that eliminating the additional foods he reacted to has seen a huge reduction in the symptoms that persisted after cutting gluten and dairy. We will be attempting to add rice back in around October, and see how he does but until then I still need a solution for a baking mix.  I tried to wing it a bit with pumpkin bread today and my attempt was okay but not great. The loaf sank a bit and was overly chewy.  So, to my original question....recipes?
    • Ask the doctor's office!  But usually you can eat right after if you feel like it.  But ask them!  Some of them will try to give you crackers, so you may want to bring some gluten-free applesauce or Rice Chex
    • I'm wondering if he doesn't have an oat problem. He was only dx'd several months ago and really shouldn't use oats for a year after dx. Just thinking out loud. I too am wondering how the rice was picked out of all those other flours to be determined to be affecting him.
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