Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


Photo
- - - - -

Mast Cell Activation Syndrome (Mcas)

g f but still sick?

  • Please log in to reply

130 replies to this topic

#31 jebby

 
jebby

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 177 posts
 

Posted 07 January 2014 - 08:43 PM

Interesting question.

 

Since there is no one protocol that works for everyone with mast cell disorders, I don't think this is a yes or no question.  If limiting high histamine and histamine inducing foods along with antihistamines and mast cell stabilizers helps the body from reacting to triggers by limiting the amount of histamine and other mediators being released in the body during mast cell degranulation, then it seems prudent to reduce or remove these foods.

 

If a person did have only the one trigger of stress and removing histamine foods during times of stress relieved symptoms then it seems to follow that they could eat more of these foods when not under stress....I just don't see a scenario where there is one clear trigger or a way to know which life event or combination of events would be the catalyst of symptoms.

 

In my opinion, there are just too many pieces to this puzzle for a clear answer.

I agree with Lisa that there are too many variables to be able to answer your question for sure. I am on a relatively large mast cell forum and there are many who have minimal symptoms from eating histamine-releasing foods but who have other triggers for MCAS, such as exercise, heat and cold, etc. Although I am have been diagnosed for less than a year, I can say for sure that my mast cell symptoms were out of control last May and September, the 2 months that I have hay fever symptoms the worst (and hence, a higher than normal histamine level at baseline).  I also have no idea if I've had this diagnosis for years and if it was masked by feeling so crappy and run down from undiagnosed celiac disease (I have always had an aversion to most of histamine-rich foods) or if it came on suddenly after I had my 4th child in 2012 (that's when I started to notice all kinds of bizarre symptoms like wheezing and palpitations, brain fog, and out of control IBS).  Now I am rambling, but the point I am trying to get across is that I'm not convinced that it can be ruled out based on not having perceived reactions to high histamine foods.

One last thing I'd like to add is that T.H., who used to be active on the "super sensitive" celiac forum on here was also diagnosed with MCAS in the last year. I am pretty sure that she won't mind that I am sharing this, as she herself posted a thread on mast cell problems on here a while back. We were both diagnosed around the same time.


  • 0

Celiac.com Sponsor:

#32 Adalaide

 
Adalaide

    It needs to be about 20% cooler.

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,449 posts
 

Posted 07 January 2014 - 09:07 PM

:)  fortunately people who care about you are more persistent than most?

 

...and just be careful of the risotto.xx love, "mom"

 

Yeah. Amazingly delicious things made of wine and parm are not on my "often" list! It will definitely be on my anniversary list and birthday list every year though because pain be damned, it was so worth it. I really think my stupid IIH and histamine crap play off each other and the capers and lemon? Yeah, both tyramine things I shouldn't be having so the two dishes together for dinner were bad bad bad for me.

 

BTW, when I was at the eye doctor yesterday he asked if I take nsaids and such to manage my IIH headaches and I said that while they work really well, I get rebound pain from a histamine intolerance. I was afraid at this point, because... doctors. Instead he just looked at me with total sympathy and was like yeah, that's really difficult to manage, it's a terrible balancing act. I thought I'd about fall out of the chair! He actually sat there with a straight face and took me seriously instead of looking at me like I was crazy or looking away so he could roll his eyes. :blink: ^_^


  • 0

"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#33 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 08 January 2014 - 05:23 AM

Addy, sometimes we get lucky and a doctor actually knows as much as we do.  :D Even my GI doc says I know more about celiac

than his colleagues. (scary, right?) 

 

And Jess knows when we talk about doctors with disdain and sarcasm, based on our cumulative bad experiences, we do NOT mean any disrespect to her.

She's different.  :)


  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#34 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 08 January 2014 - 05:32 AM

.  Now I am rambling, but the point I am trying to get across is that I'm not convinced that it can be ruled out based on not having perceived reactions to high histamine foods.

One last thing I'd like to add is that T.H., who used to be active on the "super sensitive" celiac forum on here was also diagnosed with MCAS in the last year. I am pretty sure that she won't mind that I am sharing this, as she herself posted a thread on mast cell problems on here a while back. We were both diagnosed around the same time.

 

This begs the question, then...if some of us are having sporadic bouts  of symptoms even in the absence of gluten or possible CC

 

and we have symptoms reminiscent of a glutening

 

then perhaps we are not very sensitive to trace gluten, but in fact, experiencing symptoms due to accumulated histamine in the body.

 

I presented this to my doctor who said "yes, of course, that is possible because as you know it's not always about the gluten."

 

Which is why we all need to consider OTHER reasons for why we may be feeling unwell, despite our clean diets. This is why many of us continue to read and look for answers rather than just assume

"I have celiac. I still feel lousy and this is the way it's supposed to be".

 

I don't buy that! I think we can all achieve a better level of good health.

 

Just a thought!


  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#35 anti-soprano

 
anti-soprano

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 150 posts
 

Posted 08 January 2014 - 06:18 PM

Hi All,

I wanted to validate a few things from finally reading the literature that has been recommended.  

 

1. Last June I got on this site and b*tched a blue streak because I had tried to wax my face with Nads (natural compound- not chemicals) and I broke out in welts everywhere on my face!  NOW I can laugh about it!!  This finally makes sense.  Apparently,"friction, pressure, or vibration on the skin" is a trigger for me. It's just wonderful to make that connection.  I have avoided waxing since then, because I've been afraid of a repeat performance.  Good thing. I'll just be a little more hairy than the rest from tweezing only.

 

2. Prior to my celiac diagnosis in Aug 2012, I was taking copious amounts of acid reducers as I thought I had GERD, including Zantac for many years.  When it was determined that I did not have GERD, I went off the medication.  That was about July 2012- a month before dx. Interesting, eh? Perhaps these medications are indeed masking some people's awareness of the problem.

 

Thanks again!!  I'll give you an update tomorrow.  I'm taking a highlighted print out of Dr. Jess' blog :)


  • 0

#36 anti-soprano

 
anti-soprano

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 150 posts
 

Posted 09 January 2014 - 01:23 PM

Back from the allergist.  I'm not really sure what to think.  He is testing me for serum tryptase to rule out mastocytosis.  If that is positive, then he plans to do the urine test.  When I said that people with MCAS usually test withon normal range for the tryptase, his answer was basically "why do you need a diagnosis for MCAS if you're just going to treat it with antihistamines anyways?".  I kind of see his point, but was wondering what you all thought. Have all of you with it been clinically diagnosed and is there an advantage to obtaining that clinical diagnosis? 


  • 0

#37 GottaSki

 
GottaSki

    "The past is the past...I've got places to be."

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,100 posts
 

Posted 09 January 2014 - 01:54 PM

I do not have an official diagnosis as such...we have ruled out Mastocytosis, yet I have ALL the symptoms.  I do have positive 24 hour histamine and prostaglandins and am working with both Allergy and Celiac Doc to figure out a protocol that will work to bring my mast cell symptoms under control.

 

For me, I don't see a need for a clinical diagnosis - IF I was successfully controlling my symptoms.


  • 0

-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 :)


#38 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 09 January 2014 - 01:57 PM

My Doc --who has put me through enough testing and spares me anything further unless TOTALLY necessary just said this

"Obviously, you have HIT and some sort of mast cell dysregulation".... Does that count as a clinical DX? It does for me. I am done with testing at this point.

 

I just had the really fun follow up endo/colono with biopsies a few months ago.   whoohoo!


  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#39 Adalaide

 
Adalaide

    It needs to be about 20% cooler.

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,449 posts
 

Posted 09 January 2014 - 02:59 PM

I haven't even brought up testing with my new doc. I suppose maybe I will at some point if I feel like I need to, but for now I don't see a point. If my neuro stuff doesn't pan out to a definitive conclusion I suppose I will need to pursue testing but until then I'm just rolling with treating.


  • 0

"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#40 mamaw

 
mamaw

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,067 posts
 

Posted 09 January 2014 - 03:31 PM

Is  there  a  specific  support  group  for MCAS????


  • 0

#41 jebby

 
jebby

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 177 posts
 

Posted 09 January 2014 - 04:02 PM

Back from the allergist.  I'm not really sure what to think.  He is testing me for serum tryptase to rule out mastocytosis.  If that is positive, then he plans to do the urine test.  When I said that people with MCAS usually test withon normal range for the tryptase, his answer was basically "why do you need a diagnosis for MCAS if you're just going to treat it with antihistamines anyways?".  I kind of see his point, but was wondering what you all thought. Have all of you with it been clinically diagnosed and is there an advantage to obtaining that clinical diagnosis? 

Hi Shellie, In my case I thought it was important to have an answer for my bizarre multi-systemic symptoms, and since taking regular doses of antihistamines did not control my symptoms at all, I wanted to have other mast cell stabilizers prescribed (and covered by my insurance). I also wanted to be able to be 100% sure that I had the diagnosis of MCAS before I started to spread the word about it and tell my story to my physician and non-physician colleagues. Lastly, I wanted my allergist to see that yes, it is possible to have this "rare" diagnosis that seems not be be very rare at all! He has actually been very interested in my case since I was diagnosed, or at least he pretends to be when we run in to each other at work events.

However, I can see also see the other side of things too. If one figures out that they have a histamine overload, and on their own they are able to control symptoms, then there may be absolutely no point in undergoing expensive testing (unless they feel that they need a firm diagnosis, like I did). I am actually surprised that your allergist seemed so underwhelmed by it all, but perhaps it takes a lot to make an allergist excited. I did a one month of pediatric allergy rotation during my residency and it was pretty unexciting....


  • 0

#42 jebby

 
jebby

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 177 posts
 

Posted 09 January 2014 - 04:04 PM

Is  there  a  specific  support  group  for MCAS????

There are a few Facebook closed groups for mast cell disorders. I am part of one called MCAD. The Low Histamine Chef, Yasmina, also has one called Histamine Intolerance. I am not aware of any other online support groups but am interested to know if anyone else knows of any.


  • 0

#43 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 09 January 2014 - 04:06 PM

Is  there  a  specific  support  group  for MCAS????

 

 

I think we may be looking at it right here  :D

 

The Low Histamine Chef has good stuff!


  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#44 greenbeanie

 
greenbeanie

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 302 posts
 

Posted 10 January 2014 - 11:51 AM

... perhaps it takes a lot to make an allergist excited. 

 

This made me chuckle...It definitely seems true of the allergists I've seen. I suppose if you're used to dealing with people in anaphylactic shock, anything less dramatic might seem boring.

 

I've been following this thread with great interest. I realized a few weeks ago that a sulfite intolerance has been making me miserable. My tongue swelled up during my gluten challenge last spring, then stayed swollen for months afterward (even when gluten free). This had happened on and off before, but it had never stayed swollen for so long. A CT scan and a dozen other tests failed to determine the cause, though it did interest my allergist enough to pull her colleague into the room and discuss me as a curiosity. None of us suspected a sulfite issue at first because I wasn't eating anything at all with preservatives. It turns out that the naturally-occurring sulfites in fresh foods are enough to set me off. Once I realized this, the swollen tongue was almost normal within three days!


  • 0

Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.


#45 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 10 January 2014 - 02:45 PM

, though it did interest my allergist enough to pull her colleague into the room and discuss me as a curiosity.

 

 

I share your position as a "curiosity" amongst the medical pros....not sure if I feel special, weird,  or pissed off. 

 

:lol:


  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: