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Mast Cell Activation Syndrome (Mcas)

g f but still sick?

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#121 icelandgirl

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Posted 07 August 2014 - 07:36 PM

Icelandgirl,

 

It will get better, I promise! I remember hitting a point about 2 years ago when I seriously wished that I would never have to eat anything again because I felt like I was getting sick from everything. Your kids will be okay. None of my kids seem to even remember that I was in such a bad place a few years ago.

As for bread, have you ever come across socca bread?

Jess

Thanks so much for the encouragement Jess...I appreciate it.  Also want to say that I really enjoy your blog.  :)

 

I've become afraid of food.  I hate that.  I've always enjoyed cooking and baking and eating it.  Now, I feel myself just not wanting to eat...what else will bother me?  I did dairy and soy free for 2 weeks and no change.  Added back in a little dairy, no change.  I've done low histamine for a little over a week...I don't know if it's helping or not.  I miss strawberries and bananas.  I feel like there's only a few safe things to eat and I'm hungry, but afraid to eat.  This is so psychological!


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You never know how strong you are, until being strong is your only choice.
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#122 GottaSki

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Posted 07 August 2014 - 08:04 PM

Thanks so much for the encouragement Jess...I appreciate it.  Also want to say that I really enjoy your blog.  :)
 
I've become afraid of food.  I hate that.  I've always enjoyed cooking and baking and eating it.  Now, I feel myself just not wanting to eat...what else will bother me?  I did dairy and soy free for 2 weeks and no change.  Added back in a little dairy, no change.  I've done low histamine for a little over a week...I don't know if it's helping or not.  I miss strawberries and bananas.  I feel like there's only a few safe things to eat and I'm hungry, but afraid to eat.  This is so psychological!


Try not to fear food. I know it's tough when you feel crappy and can't pinpoint what is causing it. If you aren't sure with the removal of histamines ...give it a bit longer. If you aren't improving at all then it may be some other food group or environmental factor or stress..etc.

Do something just for you every day...even if it is for a short time.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#123 icelandgirl

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Posted 08 August 2014 - 06:35 AM

Try not to fear food. I know it's tough when you feel crappy and can't pinpoint what is causing it. If you aren't sure with the removal of histamines ...give it a bit longer. If you aren't improving at all then it may be some other food group or environmental factor or stress..etc.
Do something just for you every day...even if it is for a short time.

I hear you, Lisa, I do. I just can't figure it out. I'm hungry a lot of the time and I look at food and just don't know. This is taking a huge toll on me mentally. I am trying to do something for me each day...but even when I do I have a hard time not thinking about all of this. On the bright side I had a good appointment with my allergist this week...wrote about it in the Hashi's thread...and that was helpful.

What can you always eat safely...without issues?
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You never know how strong you are, until being strong is your only choice.
Bob Marley

#124 GottaSki

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Posted 08 August 2014 - 11:23 AM

I hear you, Lisa, I do. I just can't figure it out. I'm hungry a lot of the time and I look at food and just don't know. This is taking a huge toll on me mentally. I am trying to do something for me each day...but even when I do I have a hard time not thinking about all of this. On the bright side I had a good appointment with my allergist this week...wrote about it in the Hashi's thread...and that was helpful.

What can you always eat safely...without issues?

 

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" ;)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#125 GottaSki

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Posted 08 August 2014 - 11:24 AM

doh...forgot fruit...most fruits that aren't on the HH list


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#126 icelandgirl

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Posted 08 August 2014 - 02:46 PM

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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You never know how strong you are, until being strong is your only choice.
Bob Marley

#127 jpach

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Posted 29 August 2014 - 10:34 AM

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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#128 GottaSki

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Posted 29 August 2014 - 01:06 PM

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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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#129 jpach

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Posted 30 August 2014 - 08:37 AM

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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#130 GottaSki

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Posted 30 August 2014 - 12:34 PM

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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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#131 durrsakja

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Posted 31 August 2014 - 03:35 PM

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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