Mast Cell Activation Syndrome (Mcas)

[IrishHeart]

Barty, eggs are not a HH food, sweets, at least not according to the Allergy UK lists.

 

Raw egg white is a histamine liberator, but who eats those? LOL

 

Enjoy!

 

And if you are only eating cheddar and all those other foods...the same ones all the time?--well, I am not sure you are flooding your system with 

histamine at all.

 

But an antihistamine may help. You need corn free, I know and

this person seems to have found one

 

Open Original Shared Link

 

and this lady has a quite a list of CF products--maybe 

something there?

 

Open Original Shared Link

[Adalaide]

Raw egg white is a histamine liberator, but who eats those? LOL

 

Some people seem to have some really serious licking the spatula issues whenever baking no matter how bad they know it is. Not going to point any fingers or anything.

[Kjblock]

 

Gluten free ---but feel as if you have been glutened? Have bone pain, your brain is fogged up, feel as if you have allergies, but you test negative?  Maybe your heart races and you feel anxious, but have no clue why as you are not really an anxious person by nature?

Feel like a vampire  when you step out into the sun?

 

Any of these below sound familiar?

 

• Gastrointestinal symptoms, including nausea, vomiting, diarrhea, abdominal pain, bloating (sounds a lot like celiac and/or irritable bowel syndrome doesn’t it?)
• Low blood pressure
• Fatigue
• Wheezing
• Itching, flushing, hives, sores on the face and scalp
• Episodes of fainting or dizziness
• Bone pain
• Cognitive impairment (brain fog)
• Anxiety
• Rapid weight gain or loss
• Anaphylaxis
• Chest pain and/or a racing heart
• Sensitivity to sunlight

These symptoms may be a result of mast cell activation syndrome. 

 

You do not need to have all of them. I don't, but I have several flare up on me from time to time when I have had too many histamine-rich foods (still learning my level) and it makes my life miserablel.

 

I have read tons of research on this disorder and think maybe many celiacs have it but they just do not realize it.

 

Fortunately, Dr. Jess (yes, a real live MD with celiac) aka Jebby  has written an excellent discussion of this celiac-related autoimmune disorder and what can be done to diagnose and treat it.

She has several Pub Med citations and credible research for you to read and consider.

 

I follow a low histamine diet and take Quercetin, Vit C and probiotics, but some people can be prescribed medication under the care of a physician who actually knows what MCAS is. (good luck with that)

Some of you may already need to carry an Epipen and cannot figure out why you keep having anaphylaxis.

 

I am fortunate that my GI doctor was knowledgeable enough about histamine intolerance and why our guts may be lacking the enzyme DAO and he was very encouraging in that it can resolve in time (fingers crossed)! It better!! I love bacon, shellfish, chocolate, aged cheeses and wine (who doesn't!)..and those are big giant triggers.   

 

Read more here:

 

Open Original Shared Link

 

Hope this helps!

 

Very intrigued to read this.  I was considering this as a possible diagnosis because of unexplained anaphylaxis.  However all the testing for this has been negative for me (including staining the biopsies from an endoscopy).  Then I got diagnosed with celiac and the gastroenterologist said it may have been the cause all along (although it's not a typical celiac symptom).  Here's hoping I have no more episodes of anaphylaxis--truly scary! 

[anti-soprano]

For those of you dealing with MCAS already, I was hoping you could answer a couple questions.  I thought about making a new thread, but this is a celiac support site, plus this thread was still arguably recent...

 

I was wondering what brands of Quercetin/DAO supplements people are taking that are gluten-free and safe for us.  I've done a bit of research, but get the generic answer of "there's no gluten that we know of, but we can't vouch for our suppliers".  Since a glutening would further upset the balance, I'm trying to be very cautious.

 

Also, I am quite dismayed by all of the differing lists of high/low histamine foods out there.  There are several foods that show up on either the high or the low list depending on the source (cabbage, bananas, and cranberries are some examples).  I am guessing that it's going to be largely trial and error to see what affects me personally. Cinnamon put me back today- which is why I was researching food lists.  There are also a couple of sources that say to not eat left over meat and others that say don't eat left overs period.  I was wondering how many of you have had issues with that.  I guess I could freeze all left overs, but is a day or two really going to affect me?  I am trying desperately to separate what is fact from what is promoted without much substance by the well meaning, but fanatical.

 

Thank you in advance for any personal feedback you can supply!

Shellie

[Adalaide]

I'm far too lazy to re-watch this video to see what supplements are listed, but this woman basically writes the bible on low-histamine stuff and this is a good video on supplements and she's done all the research for us already. Open Original Shared Link

 

I wish I could help you on the food stuff, but to be perfectly honest I also follow a low-tyramine diet and while a significant number of foods overlap, there are still a fair number that are only one or the other that I avoid. At this point I honestly have no idea why I avoid most of the foods I do, I just avoid them. I can say though for sure that bananas will set me off like someone put lightning to my nerves. I keep leftovers for a day. Whatever I know I am not going to eat tomorrow goes into the freezer the day I made it. Is it really going to affect me? This isn't like gluten where just a little is automatically going to set you off, it's like a cup that you fill up and I'm not going to put leftovers in my cup when I can be putting wine and cheese and strawberries in it.

 

ETA: btw there is a really great book (ty so much Irish!) called What HIT Me? that has been invaluable to me. It really helped to ground me and separate a lot of the fact and fiction stuff, along with simply talking to people who live with it and reading the Low Histamine Chef site and seeing what her and other people do.

[anti-soprano]

Is it really going to affect me? This isn't like gluten where just a little is automatically going to set you off, it's like a cup that you fill up and I'm not going to put leftovers in my cup when I can be putting wine and cheese and strawberries in it.

 

Very good point!  Wine, cheese, and strawberries all trump left overs!!  I will freeze my food.  end of discussion.

 

Thanks for all the information!!  I will look into all of your suggestions.

[IrishHeart]

. I take this quercetin. No gluten 

 

Open Original Shared Link

 

My advice? Just avoid the high histamine foods and do not get all crazy about the rest. I have a banana once and while and nothing bad happens.

 

It's about LOADING your system.

 

Example: Let's say you have some aged cheese, pepperoni and marinated olives on an antipasta and then, have sausage lasagne, while drinking some red wine and then have chocolate  for dessert (damn--that all sounds delicious and some of my fave things to eat! LOL)

.... well...then you are taking in a huge amount of histamine.

 

I listed the High histamine foods above, but here it is again. This is from Allergy UK and seems to be the most comprehensive of the bunch of lists on the internet.

 

in summary:

 

• Alcohol, especially beer and wine

• Pickled or canned foods

• Cheese: especially mature cheese – the more mature ,the more histamine it contains

• Smoked meats, smoked ham, bacon and Salami, etc.

• ALL SHELLFISH and  canned fish

• Beans and pulses (especially chickpeas, soy beans, and peanuts)

• Soy products (soy milk, soy cream, tofu, soy sauces.)

• Sauerkraut or other pickled foods

• Some fruits (kiwi, oranges, papaya, strawberries, pineapple)

• Cashew nuts

• Chocolate, cocoa, salty snacks, sweets with preservatives and artificial colorings

• Products made from wheat (easy for us to avoid)

• Vinegar

• Yeast

• Ready- made meals

• Black tea

• tomatoes are histamine liberators

• Additives: Benzoate, Food dyes,  Nitrites, Sulphites

Some lists include spices, but I personally do not notice cinnamon as being a problem. As I said, I eat a banana on occasion and I use lemon daily and --these small amounts are not an issue for me.

 

I tried making a pork roast with sauerkraut a few weeks ago. BIG mistake. Turns out, it has THE HIGHEST amount of histamine on the list...and a few bites was more that I can handle, yet I can drink a vodka and seltzer with lemon and be perfectly fine. I know my limit now.

 

I learned it the hard way eating ONE piece of chocolate every day during December (we have a traditional advent calendar thing we do and it involves chocolate). We also enjoy champagne for our birthdays, anniversary --all during this time period--and by Christmas, my face was full of little sores, everything ached,  and my bowels were "misbehaving". 

 

What you need to do is: Eliminate them all for a few weeks, then try one and see what your level is.

[GottaSki]

It really is finding what you can tolerate 

 

I've had problems with every item on every list - including cinnamon - yet was able to drink red wine for many months with no issue 

 

Oh...we do freeze leftover meat to use for my other meals.

[janpell]

Well, I am only half way through reading this thread but finally, a place where I belong! I found out about histamine foods approx six months ago but never this condition. Thanks for the link. Last week, I guess because of the holidays, I started to itch again so I cut I went low histamine and it's gone. I was always sensitive to so much - sounds (especially tinkling, repetitive ones), textures and smells and noticed this has improved immensely. I don't think I could ever get tested as I think I would feel too insecure to even ask. My history with doctors hasn't been a good one and after years of meds for my AI conditions I asked my doctor to test me for celiac and kind of got belittled for it. I have a new doctor but rarely go anymore to discuss any problems (as there are so few now) but mostly because I was so failed in the past that I just take care of it on my own now. Thanks for providing more information that I think I need to solve the last bits of my puzzle. LOL, now I get to work on my kids' puzzles. 

[mamaw]

again  I must  thank you all for  this  post.... There  is  so much to learn  & understand  but  still I feel  you all have given me   hope.....I go in  for  surgery  in a few  days.... When I called  hospital  to  tell them  how  badly I react  to almost  everything including  the  gurney sheets  they  think I'm insane....I  told  them  about  having  anaphylactic  reactions  from  the  morphine  family  &  many other  drugs....again  I must  be  insane.... I told  them  the  twightlight  drug  that  causes  no  reactions  but  they  say  it is not enough for this  procedure....I'm more  scared  of the  reaction than the  surgery itself.....I told  them  from  my immunologist that  I should  avoid  anything  with histamines. The  doc  never  said  why I should avoid  histamines  but  said to avoid  them....so  this  made  the  bell go off  that  MCAS maybe  my problem... To be honest I never heard of this before but  makes  great  sense  to me  now.....I  have  had  reactions  to  foods, meds,  environmental stuff for  years....I  always  blamed  my beet  red face & neck from Rosacea but  now  I  think  it is  a  histamine  response...It  comes  in a  flash  when  speaking  &  can  linger  or  retreat  as  quickly as it  came.. Same  with  cold feet &  hands to the point  I'm frozen  & turning  blue in 70  degree  weather....

I  do  know  for  sure  I have  rosacea, no thyroid, raynauld's, A-Fib, hysterectomy, grave's  disease, present  with symptoms  of  hyper & hypo  since  my RAI in 07.....

where  so I go from here?  I  would  like  an official  dx's  because docs  just  don't  believe  me when I  tell them....does  anyone  know a doc  who would  understand this is Western Pa?

does  anyone  find  alavert  works  better  than  zyrtec or allegra?  What  about  Dr. Theo's  product  called Neuro Proteck?

 

thanks  so much.

[mamaw]

As  I  was  scanning  the  web for more  info I found  "ibreatheimhungry.com "  She  talks  about  having  many issues along  the lines  of  this  section. She  goes  on to  mention  food  grade  Diatomaceous  earth  as  helping  her  issues. Has  anyone  tried  this  ????? very  curious......

[IrishHeart]

As  I  was  scanning  the  web for more  info I found  "ibreatheimhungry.com "  She  talks  about  having  many issues along  the lines  of  this  section. She  goes  on to  mention  food  grade  Diatomaceous  earth  as  helping  her  issues. Has  anyone  tried  this  ????? very  curious......

 

I have heard of it. A massage therapist I saw once kept pressing me to use it. She was going to cure me of my osteoarthritis. (that's what she said)

 

I have an open mind (to a point) and so, I researched it and discussed it with my in-house chemist (who used it in the garden at one point)

and well, let's say we concluded it's not going to help me with anything. 

 

No published research or medical information on it, except people who claim it solves everything from intestinal parasites to cancer.

Others claim  it detoxes the body and removes mucus from the intestinal walls.

 

Seem to me we need some mucus in our already damaged GI tracts to have, um, shall we say, easy transport? 

 

If you do try it, make sure you get the stuff that's okay for human consumption. 

[anti-soprano]

Thanks Irish Heart and Lisa,

I am trying not to get all obsessive about this.  I have been eating only low histamine foods exclusively for 2 weeks and plan on at least 2 more before I go exploring.  I was so discouraged when I made a bang-up shepherd's pie (I am definitely a better cook after 2 weeks!) that actually tasted good and I broke out the next day.  The only new things in it for me were cinnamon and sage so I googled "cinnamon + histamine" and it came up on a Dr Janice Joneja's list: Open Original Shared Link

 

 So, trial and error.  I'm more OK with that than having no explanation!  The mystery to me is why this has escalated to such a point all of the sudden.  I had cinnamon in a gluten-free apple pie over the holidays with no issues at all. I guess I don't have to know why it's so bad now as long as it calms the heck down soon.  I need to empty my bucket!!

 

Mawmaw- I find it interesting that I too have graves disease and have had environmental allergies all my life.  13 years of allergy shots and allergy induced asthma.  I've only had one episode of a drug reaction (Bactrim- which I think I spoke about already in this thread).  I hope your surgery goes well and that your caretakers listen to you.  It's the worst when a person who is supposed to help you looks at you as though you're a crazy woman.  

[mamaw]

Thanks  so much anti  Soprano.......

Needless  to  say I'm a  bit un-nerved  by  the  hospital's  response .....but  today  they  did  seek  another  hospital  where  I  had  surgery in 09  to  understand  what  they  gave  me in  drugs.....I'm not  a  doctor or  a  nurse so  today  when  they  questioned  me  again  I  said  " How  would  I know  about these  or  drugs if   a  medical person  hadn't  written  them  down  for me  & told me  NEVER to let  anyone give them to  me  ever  again"....so  hopefully  they  maybe  got it now.....

 

I  had  many  surgeries over  my lifespan   &  didn't  start to  react  to  drugs until around  my  40's... then  having  RAI  I  was  hyper  before  that  procedure  & like  many  went  the other  way to Hypo  &  also  received the gift  of  Grave's & A Fib.....

[GottaSki]

Since many of the histamine food lists have conflicting info, I thought I'd post a link to this list:

 

Open Original Shared Link

 

While not perfect...I prefer this list because it reflects how much histamine is in foods along with those foods that liberate histamine within the body.

[IrishHeart]

That is the mother of all lists, Lisa. Thanks, hon!! 

[anti-soprano]

Likewise, Lisa!  Much love for the list!!

 

I continued to have symptoms about every third day on a low histamine diet for 4 weeks.  After reading up on the low histamine chef's site, I recently changed every rackin frackin beauty product I use and things seem to be getting better (knock on wood).  I don't smell either, which I see as a distinct plus.

 

I think I would have done near lost my mind without you people. Can't thank you enough.

[GottaSki]

That is the mother of all lists, Lisa. Thanks, hon!! 

 

You are always welcome

 

Likewise, Lisa!  Much love for the list!!

 

I continued to have symptoms about every third day on a low histamine diet for 4 weeks.  After reading up on the low histamine chef's site, I recently changed every rackin frackin beauty product I use and things seem to be getting better (knock on wood).  I don't smell either, which I see as a distinct plus.

 

I think I would have done near lost my mind without you people. Can't thank you enough.

 

Happy to share

 

Knocking wood here that you continue improve!

[Chavela73]

I was diagnosed 3 yrs ago with Celiac Disease, I did good to start with and then I started having all these allergy symptoms. I have never heard of this before but it sounds exactly like what I have been going through. I have started wheezing and sneezing bad. At time I break out in red welts on my face like I have been bitten by Mosquitos. I kept saying I think I am allergic to something or I have asthma but everyone would tell me it's just allergies. I am going to do more research on this, I was beginning to think I was going crazy and falling apart. Thank you so much for posting this and I hope I can get to a doctor that knows about it.

[T.H.]

The newest information down the pike on this condition. :-)

 

"A concise, practical guide to diagnostic assessment for mast cell activation disease" by Afrin and Molderings

Published February 2014

Open Original Shared Link

 

 

And hi, Jebby! :-)

 

Just wanted to add something of my own personal experience as someone else with MCAD and Celiac Disease, in case it helped anybody exploring this.

 

1. My own reaction to gluten is the worst thing I have, still. It affects me for months. The doctor and I have discussed the symptoms and her thought is that it may be the celiac disease responding to the gluten which then triggers the mast cells because of MCAD, so a fun double-whammy that I feel very lucky I survived to talk about. This is speculation only at this point, however. 

 

I mention this because I've now spoken to a couple of other celiac and MCAS/MCAD sufferers who have something similar: a really, really bad reaction to gluten. Not all celiac/MCAD folks, but a few of us.

 

 

2. I'm extremely sensitive to very small amounts of gluten. The same celiac/MCAD folks i spoke to who had a huge reaction also had reactions to mere traces of gluten cc. I don't know if that means the intense reaction and reaction to traces might be more likely to coincide, however; not even close to a big enough sample size, obviously. But interesting data point.

 

3. I think one of the most important things you can do for yourself if you are searching for answers is to trust yourself and how you feel, and at the same time be fluid and be aware.

 

If you have symptoms that feel like you're being glutened, even when others disagree it's possible? Personally, I think you should explore it, but be fluid enough to adapt to what you find. Because if you pay attention, you'll find out soon enough if gluten isn't the issue, because you won't get better. Or if you do improve, it won't be complete, or there will be oddities and things that don't match up right.

 

All it takes is for us to be aware enough to notice when something is a perfect fit, and notice when something is not a perfect fit, then go and explore what else could be going on if it's the latter. Lather, rinse, repeat.

 

I had such a distinctive reaction to low levels of gluten that when I got glutened, there was no doubt what it was. Still isn't, even when it's to such low levels most celiacs don't have issue with it, even when I have to distinguish it from symptoms arising from other conditions. I wasn't aware that it was some weird MCAD/Celiac combo punch, but the gluten part? I had that covered. But then I had symptoms that were similar to glutening but not as severe, didn't match up quite right, and with those, it always felt more like a case of 'well, I'll treat it like gluten for now but keep exploring.' And exploration got me my answers. 

 

I guess really what I'm trying to say is that if you have this - or any condition where things are a bit wonky or strange - you are going to have plenty of people telling you that what you feel is impossible, that what you experience is crazy, that you're overreacting by avoiding X or Y. Family, friends, even medical professionals may say this to you. And that hurts, and it can be hard to have faith in yourself when this happens. 

 

Really, it's not a bad idea to take an honest look at what others have to say, to think about their arguments, but in the end, you've got to trust yourself. You're the only one who knows how you really feel, and what's been going on in your day to day life. If other people's arguments do not match what you experience, then move on and try to find the truth.  

 

Here's wishing everybody finds out exactly what makes you healthiest and happiest, sooner rather than later. 

[GottaSki]

Thank you TH

 

That link didn't work for me...probably a kindle issue...just in case anyone else can't access...here is another link:

 

Open Original Shared Link

[T.H.]

But the food thing has me confused. I can't eat soy, spinach, or drink wine. Chocolate seems to bother me sometimes, but other times it's OK.

 

I have never had any problems with avocado, cheddar, dates, sausage, yogurt, vinegar, bananas, or eggs.

 

The rest of the foods on the list are things I haven't tried or don't eat anyway.

 

And corn is the very worst offender for me, even worse than gluten. I don't see that on the list. Maybe I DON'T have this?

 

I'm so confused!

 

Bartful, 

there was a thread on this in one of the MCAS groups recently and, well, this is a list of what points were made, best I can remember! i was trying to learn about this as much as I could, too!

 

1. Depending on why a food was on the 'bad' list for a low histamine diet, some people had trouble with it, and some people didn't. There were some who only had trouble with the foods that inhibited DAO, or who only had trouble with foods that encouraged histamine release, or foods that were high in histamines naturally.  Some reacted to all, some to only some or one of the categories.

 

2. The histamine load for the day made a big impact. So on days when one has had more mast cell release and potentially more histamine, some of the high histamine foods could be more of a problem.

 

3. Some people don't really seem much impacted by the low histamine diet. It might be due to the fact that the mast cells can release all sorts of things, and some MCAD folks are actually NOT systemically high in histamine levels most of the time. They might be high in other things, like prostaglandins, or I've met two now who have heparin release as the biggest issue; bleeding problems for them. So if histamines aren't as elevated for you, high histamine foods may not impact you as severely as others.

 

 

When I started the low histamine diet - because I was eating some of the 'bad' foods, too, like avocados nearly daily - one thing that I noticed was that it lowered the level of the reaction from some OTHER foods, and lowered my over all reactivity. So even if these foods weren't enough to usually set me off, they were contributing to my susceptibility to being triggered by something ELSE.  That was helpful to realize. 

 

Most people I talk to have the list individualized eventually, so there may be some 'bad' foods that you do just fine on, too. 

 

Since it's been nearly two months since you posted, I'm hoping you are doing well and have found more about this to help you out! :-)

[cahill]

I really need to do some more reading on this subject.

 

Thanks for posting everyone 

[mamaw]

I'm trying  the  low histamine  diet  & find  it is  helping  but with  a  recent  hospital  stay  I've  not  got  back  to  being  on  track again...

Does  anyone  have  a   list  for  US  doctors  who  understand   MCAS?  I'm sure  the list  is  short  but  it  would  help  to know  who  to  seek out  for help... I had  all the  bloodwork, urine  testing  done by  my PCP  but  he  has no idea  how to  read the  results....

[GottaSki]

I have seen many folks on the mast cell forums have their local docs consult directly with Dr. Afrin.  This might be the best route as it would allow you to stay local for your care...it can be tough to find the right combo of meds if you need them.  I've had a rough time with it, but seem to be on the right track now...with hindsight I can see the process could have been helped with the advice of an expert.

 

Side rant.....doctors not being able to read and interpret medical results drives me batty..(there is a mom with young kids on another thread that refused to run DGP antibody tests because no one in their clinic would know how to read and interpret results)...these doctors should be ashamed...where is the curiosity  and drive to learn and continue to expand their knowledge so they can - I don't know - help their patients?????  Ok..rant done, for now