Mast Cell Activation Syndrome (Mcas)

[Adalaide]

I've never felt that on this front a diagnosis is important. (at least for me) Is there any real reason to get a diagnosis? I seem to have moderate to good control of things myself with diet depending on how my environment changes.

[GottaSki]

I've never felt that on this front a diagnosis is important. (at least for me) Is there any real reason to get a diagnosis? I seem to have moderate to good control of things myself with diet depending on how my environment changes.

 

If symptoms are managed with diet alone...no problem.

 

Unfortunately for me...strict removal of all high histamine and histamine inducing foods for more than a year has not been enough.  I have far too many unexplained allergic type reactions that continually increase in severity along with flares of other symptoms that return without explanation.

 

Again, for me...the dx is not the important issue...it is having the assistance of my doctors when needed.

[Adalaide]

If symptoms are managed with diet alone...no problem.

 

Unfortunately for me...strict removal of all high histamine and histamine inducing foods for more than a year has not been enough.  I have far too many unexplained allergic type reactions that continually increase in severity along with flares of other symptoms that return without explanation.

 

Again, for me...the dx is not the important issue...it is having the assistance of my doctors when needed.

 

For you it totally made sense. I know you were way off and in an extreme situation. I'm also so glad you're getting better.  I was just curious if there was ever a reason for anyone to go that road if they are managing. A dx won't stop me from spending hot days out of the house carrying ice packs and it won't keep me from having a modified diet. I just think it will lead to more pill pushing.

[mamaw]

I'm so  super hyper  sensitive  that  I need  more  help  than just  the  diet  alone...... the  diet  is  helping  but  I'm not there  yet......when I  seen  a  Immunologist  they  just  said  stay  away  from  histamine  stuff!!!  My PCP  was  willing to give  the  script  for the  testing  listed  but  has  no idea  what to do with it....I keep  printing out info  about this & give to him.....It  is  yet  another  newer  illness  that  wasn't  taught in med  school......

My  hope  was to  find  a  doctor  to give  me  more  guidance .....I  present  with many symptoms ......

[GottaSki]

I'm so  super hyper  sensitive  that  I need  more  help  than just  the  diet  alone...... the  diet  is  helping  but  I'm not there  yet......when I  seen  a  Immunologist  they  just  said  stay  away  from  histamine  stuff!!!  My PCP  was  willing to give  the  script  for the  testing  listed  but  has  no idea  what to do with it....I keep  printing out info  about this & give to him.....It  is  yet  another  newer  illness  that  wasn't  taught in med  school......

My  hope  was to  find  a  doctor  to give  me  more  guidance .....I  present  with many symptoms ......

 

Yep...I have the same frustration...yet another digestive disorder that is under-researched, new to even the most aware doctors and completely off the radar of our best doctors.  Beyond frustrating!

 

Do you have written or electronic copies of your tests?  Either post them here or PM me...I'll be happy to do what I can to move you along this frustrating mis-adventure.

 

Hang in there

[mamaw]

Yes, I do  have  copies... I'm  still waiting  on the 24 hour  urine  test.... I'll pm  you  when I get  them  back..... thanks so much....

[T.H.]

I've never felt that on this front a diagnosis is important. (at least for me) Is there any real reason to get a diagnosis? I seem to have moderate to good control of things myself with diet depending on how my environment changes.

 

If you've got a good control over it, the only reason I can think might be for emergency situations.  

 

If you ever, got forbid, got hospitalized for something, were in an accident, that sort of thing, you might need a diagnosis to lend weight to what you need to do to stay healthy. Or at least have a doctor who knows some of your needs and can back you up in the face of other doctors who may ignore or not believe you.

 

I've been glad to get that diagnosis for this reason, even if I'm not using any meds and had to do most of the research on the diet myself.

[bartfull]

If you've got a good control over it, the only reason I can think might be for emergency situations.  

 

If you ever, got forbid, got hospitalized for something, were in an accident, that sort of thing, you might need a diagnosis to lend weight to what you need to do to stay healthy. Or at least have a doctor who knows some of your needs and can back you up in the face of other doctors who may ignore or not believe you.

 

I've been glad to get that diagnosis for this reason, even if I'm not using any meds and had to do most of the research on the diet myself.

From what I've heard from folks here who were hospitalized, and from my own experience when my Mom (a celiac) was hospitalized, it wouldn't matter if you had a diagnosis or not. It wouldn't matter if you told them in person and gave them a list of foods you can or cannot have. They will feed you your "poisons" anyway. The ONLY way to stay safe at a hospital is to have an advocate by your bedside at all times, AND to have your own food brought in.

[cahill]

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

 

Yeah not sure some times how to feel about that.

 

When they FINALLY listen to us is a strange feeling.

 

I had an appointment with the  one of the top GI docs in the country last Dec. After I got my appointment , while arranging to send my records , numerous phone calls/ emails back & forth and the whole way out there ( a 6 hour drive) I felt guilty thinking that I REALLY did not belong there. That I was taking up  an appointment that someone else needed more than I did .And that they would look at me like I was crazy .

 

 

Welp that did not happen   I fit right in .And they really listened

[cahill]

From what I've heard from folks here who were hospitalized, and from my own experience when my Mom (a celiac) was hospitalized, it wouldn't matter if you had a diagnosis or not. It wouldn't matter if you told them in person and gave them a list of foods you can or cannot have. They will feed you your "poisons" anyway. The ONLY way to stay safe at a hospital is to have an advocate by your bedside at all times, AND to have your own food brought in.

I agree

[Adalaide]

The thought of being hospitalized hadn't really occurred to me. I have my husband to feed me and speak for me so that isn't really an issue. On the other hand, in a worst case scenario, in a tragic accident he may not be available and I may need my medical records to speak for me. It can't hurt to do the urine test next time I'm in the office. Assuming of course that he's even up on what to order or their regular lab does that test. Otherwise it could turn into a "thing."

[cahill]

I am reading thou this thread,,, alot of information here

 

A couple questions  ,,, they may have already been answered but   

 

What test do you have /ask for ??

 

I saw where antihistamines where mentioned,, are you talking over the counter or prescription ?    

[cahill]

After reading thru this thread ( and  with it being St. Pattys day this week ,, think lots of corned beef ) I  am very aware that I may have a similar issue

[GottaSki]

Hi Chill!

 

Corned Beef started bothering me in the years after gluten removal....I thought it was everything the store bought type has in it....which is partially true...it was the histamine dealio for me.  Last year I brined my own brisket and had much milder reaction...since than I stopped eating any processed meats...I can't even do the uncured types...but hope to soon.

 

To answer your other question....yes antihistamines are used as medication for mast cell.  The hard part is finding the right combo for you.   I had already been working on finding something besides benadryl to control my mysterious "allergic" reactions long before I discovered histamine foods or Mast Cell were issues for me.

 

Look at the beginning of the thread....Irish added a link to Dr. Jess's blog that answers a lot of your questions....if not, let us know : )

 

Edited for spellchecker gremlins

[greenbeanie]

Hello super-helpful people,

 

I'm wondering if anyone who's been through MCAS testing can offer some insight into the value of tryptase testing alone (plus symptoms). I'm currently waiting for the results of that test, but it's the only one my allergist thought it was necessary to run. She seemed to think that a normal result would rule out MCAS definitively (which I know is not the case), and also that a positive result along with my health history would essentially be enough to confirm it. I asked about the chilled urine test and other recommended tests too, and she said there was no need to run those, although maybe she'd go back and do them if my tryptase is high. I've read the chapter by Dr. Afrin that Dr. Jess links to in her blog (thanks for the excellent info!), and my overall impression from that is that a tryptase test alone probably won't tell me anything conclusive.

 

Anyhow, I won't rehash my whole story here - the essentials are in my signature. The upshot is that I've had tons and tons of symptoms that are common to both celiac and MCAS for decades, but my celiac tests were negative. While I feel much, much better now that I've been gluten-free for nine months, it's mostly the GI and neurological symptoms that have improved. That's wonderful, obviously - especially the balance and coordination problems, which were the scariest and had landed me in the hospital with unexplained ataxia before. However, the more classic allergy-type symptoms have not gotten much better at all, even though I've been on double-doses of antihistimines daily for years. Allegra does make a tremendous difference, but it still does not really control my symptoms. I'm still struggling with dizziness and coughing fits from even mild temperature changes (especially cool-to-hot), and I now react very strongly to all foods with even very small levels of naturally-occurring sulfites. And this is while cooking almost all my food from scratch at home, and not using gluten-free flours with any potato starch or bleached tapioca starch in them. I finally figured out that sulfites caused the tongue swelling that lasted for months after my gluten challenge, so I know they are a huge trigger for me. But even when I eat nothing but plain raw veggies and freshly-cooked organic meat with no seasonings, the extreme reactions to heat seem to be worsening. I'd previously tried a low-histamine diet and it didn't help all that much, but that's when I was still getting sulfites in other ways. By avoiding sulfites now I'm essentially back on a low-histamine diet too.

 

Sorry for the rambling...I'd been so frustrated at all the inconclusive tests I had last year that I couldn't face any more testing or stressful conversations with doctors for a while. But now that I'm waiting for the tryptase results I'm finding myself in the I-need-an explanation-for-all-these-chronic-problems mindset again, and I can't help getting my hopes up even though I realize that the tryptase results probably won't tell me much one way or another (and my doctor will almost certainly stop investigating again if this test comes back normal too). Did any of you who were officially diagnosed with MCAS find that the tryptase test was a key factor? 

[jebby]

Hi Greenbeanie,

I have been away from this thread for a long time.

In my case my tryptase level was totally normal at baseline.

If my allergist had not proceeded with further testing (including a repeat tryptase to show that it increased with symptoms and urine tests) I would never have been diagnosed with MCAS. He fortunately took this time to read all of the info that Dr. Afrin had sent to me.

Also, I have two friends who are internists that had never heard of MCAS until my post, now they are stating to see it and diagnose it in their patients since they know to look for it

Jess

[greenbeanie]

Hi Greenbeanie,

I have been away from this thread for a long time.

In my case my tryptase level was totally normal at baseline.

If my allergist had not proceeded with further testing (including a repeat tryptase to show that it increased with symptoms and urine tests) I would never have been diagnosed with MCAS. He fortunately took this time to read all of the info that Dr. Afrin had sent to me.

Also, I have two friends who are internists that had never heard of MCAS until my post, now they are stating to see it and diagnose it in their patients since they know to look for it

Jess

 

Thanks so much for your response, Jess. I just got my results, and my tryptase was indeed normal. At least I now have a baseline value. I can probably convince her to run the test again next time I have acute symptoms. I am fortunate to have an allergist recently out of medical school who has heard of MCAS. Although it didn't occur to her until I asked about it, she immediately said I do fit the profile when I brought it up. Next time I'll bring a copy of Dr. Afrin's chapter with the relevant diagnostic parts highlighted! 

[GottaSki]

Have had to explain Mast Cell Activation to a several people in my life since the combo of meds I'm on has finally brought consistent "vertical time" back into my life.

 

Found a fun way to explain it -- we have "Hyperactive Mast Cells", rather than having too many which is called Mastocytosis.  And the system the body normally uses to keep mast cells in balance is broken so it doesn't clean away unnecessary items in our body thus causing a bunch of problems (insert symptoms here).

 

Hmmm...that sounds better in person...but thought I'd share.

[CaliSparrow]

Hi Greenbeanie,

I have been away from this thread for a long time.

In my case my tryptase level was totally normal at baseline.

If my allergist had not proceeded with further testing (including a repeat tryptase to show that it increased with symptoms and urine tests) I would never have been diagnosed with MCAS. He fortunately took this time to read all of the info that Dr. Afrin had sent to me.

Also, I have two friends who are internists that had never heard of MCAS until my post, now they are stating to see it and diagnose it in their patients since they know to look for it

Jess

Hi Jess,

My doctor is familiar with MCAS but unfamiliar with the tests you suggest. She is open to calling Quest or an independent lab to inquire about them. In the past, she has used a panel of labs from Dunnywood labs that looks at histamine, diamine oxidase, and zonulin activity. She is leaving it up to me.

Can you shed some light on these various tests or what labs do this particular testing you describe?

Thank you!

Karen

[T.H.]

This is the latest information on diagnosing MCAS/MCAD that I know of. It was put out this February - Open Original Shared Link

 

I imagine that may be of some help to her. ALSO, the mastocytosis society will answer questions from doctors - they have some experts who have agreed to do this - about mastocytosis AND MCAS or MCAD.   So she may want to check that out, too. 

[CaliSparrow]

This is the latest information on diagnosing MCAS/MCAD that I know of. It was put out this February - Open Original Shared Link

 

I imagine that may be of some help to her. ALSO, the mastocytosis society will answer questions from doctors - they have some experts who have agreed to do this - about mastocytosis AND MCAS or MCAD.   So she may want to check that out, too.

Hi T.H.

Thank you! I will send this to her. Do you know what labs perform this test or how I can find this out? I didn't see anything on the website.

Karen

[GottaSki]

Hi Karen!

 

I think you need to re-read the chapter TH provided.  I've read it numerous times and I think the tests are listed on pg 17.  Will give it another read and let you know for sure.

 

[GottaSki]

my mistake...page ten.

 

and I have given this paper - hard copy and digital via email to all my doctors.

 

Thank you TH

[CaliSparrow]

my mistake...page ten.

 

and I have given this paper - hard copy and digital via email to all my doctors.

 

Thank you TH

That must have been the page right after I got scared or bored

Thank you both!!

[CaliSparrow]

Oh! I meant labORATORIES like Quest or LabWest!

I guess I'll just send this to my doctor and let her figure that part out.