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MCAD (Read 13624 times)
kesasur
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MCAD
09/20/13 at 06:51:09
 
Well, hello again,

I did indeed see a local allergist, who was recommended to me from the folks in Boston. It took him about 3 minutes of hearing my symptoms to say it sounds like you have MCAD and then we went on to discuss testing (urine prostaglandins), medication (I'll try gastrocrom again) and stay on allegra 180 for now as well as the other meds I'm on. If I have trouble w/ gastrocrom I guess he'll try ketofin. I think I was just so stunned that someone understood and was familiar w/ the disorder that I forgot to ask more questions!
So I'll start my list and welcome suggestions from anyone here.

I guess my biggest question is "do I need an epi-pen". I've had 2 ED visits but never full blown anaphylaxis. Really low BP, shakes, sweats, diarrhea, chest congestion, throat pressure/tightness, but never lost the ability to breath. No one ever used epi- once I was told it was a huge panic attack, the other an "msg reaction".  Hmmmm.

I will start gastrochrom slowly as last time, after I had watched the mastocytosis society video I just opened the vial and started taking the meds, throwing all caution to the wind- NOT like me at all but I was at the peak of my symptoms and really wanted help.  

so, do I understand that:
1.  I could have taken too much and my body just been unhappy with this?
2. that the upstart of these meds can aggravate our mast cells and actually make symptoms worse (a bit?) before they get better?
3. I really just don't tolerate it?

He also mentioned testing the urine for a more definitive diagnosis- but for now wants me to stay on the allegra since it has made such a huge difference for me in just 3 weeks.  I was just about to start zantac...but I'll defer to the gastrochrom for now.

Thank you for your support, suggestions, stories and help!

Kelley
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Alice in Mass
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Re: MCAD, new member
Reply #1 - 09/23/13 at 06:25:01
 
Hi,

I am new here, and see Dr Akin in Boston for MCAD. I am so glad to have found this forum. My big question is about diabetes, insulin and MCAD. But here's a little about me first:

I live in Massachusetts, and am 62.  I am married, and have 4 grown children - 3 boys and a girl. I also have 2 little red-headed blue eyed grandchildren, with a new baby girl due in November.

I love to do crafts - sewing, knitting, crochetting, painting and more. I also love my perrenial garden.

I am also severely allergic (anaphylaxis)to latex (the bane of my existence) I am basically housebound except for Dr visits, and an occasional trip to the grocery store.

When I was working, I was the chairperson of my hospital's Latex Allergy Task force, and we got rid of most of the latex. But the Board of Director's decided to do some updating and remodeling, and installed "the new, green, envirnmentally friendly - rubber flooring", which forced me to retire in 2009 from my job in the Lab.

Now retired and on disability, I worked in the medical lab for 35+ years.I did Blood banking, Microbiology for 15 years each, and Clinical Chemistry for 5 years.

I have had 9 anaphylactic events and tons of allergic reactions. Daily I take at least 75 mg of benedryl (usually more), 1-2 Zyrtec, 300mg ranitidine. I also have asthma due to the latex allergy, so I also take Advair, and Flonase daily. I also use Patenol eye drops - I developed a detached retina (- discovered on a routine annual eye exam with no symptoms). The Dr said the inside of my eyeball was so swollen apparently one of the connections just popped). I had laser surgery for this, and again for another retinal tear. I tried Xolair, and it made me sicker. I also sometimes take liquid oral Gastrocrom, but not right now.

I also have Post-grave's Thyroid Disease, and insulin dep Type II diabetes, along with asthma, arthritis, hyertension, depression, GERD, low potassium, and hyperlipids. (I got all the bad genes)

Does anyone here have insulin dependant diabetes?

I was just released from the hospital (2 day stay) after having an allergic reaction to my rapid acting insulin. I needed IV steroids to stop the reaction. I tolerate Lantus fine, but not the quick acting. I reacted to Humalog - which has latex inside of their stopper on the liquid insulin (per a Technical rep at Eli Lilly), and to Adipra, and to Novalog, which both are latex free (according to their manufacturers).

I don't know if I am actually allergic to the insulin itself, ot the preservatives. My Endochrinologist says the only way to find an insulin that I am not allergic to is by trial and error - so I hope I don't wind up in the hospital again. The hospitalist (MD) put me on Glipizide - an oral med, which works right now, but the Endochrinologist says it will stop working soon. My blood sugars were hovering around 500, but we did get them down to 300 by avoiding all Carbs. The Glipizide right now brings my Blood sugars down to 125. Wink

Are their any diabetics with MCAD in this group??

I need to find a quick acting insulin that I can use.  Any Ideas?
Thanks, Alice in Mass
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Lisa
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Re: MCAD
Reply #2 - 09/25/13 at 16:28:41
 
Hi Kelley!  Welcome to our forum!  Iīm glad you found us!

Iīm also really glad you found a doctor who could help you!  This is great news!!  Please post his name and contact information in the area under Doctors so that we can have him referenced here for other patients in your area.

As to allegra, yes, thatīs a great medication!!   I loved it!  Iīm unfamiliar with gastrocrom, however and do fine with Ketotifen and ranitidine.  So, I really canīt say how itīs working with you, however, there are those who must work up slowly with their meds and I have heard others trying to get through it and eventually work their way up to it, but others canīt manage it at all.  So itīs anybodyīs guess.  You are really your own best judge at this since all of us react so differently.   I can take meds without issues, but what gets me is when they take effect, this can mess with my system and put me into a crisis.  

As to your having to have your throat close with anaphylaxis, this is not how it is with masto, Kelley.  Thatīs what happens with an IgE mediated anaphylaxis.  Masto will cause anaphylaxis, but that doesnīt mean our throats close up.  Mine never does and thatīs very possible due to the form I have.  I never get edema and in not getting edema, my throat wonīt close up because the edema and the hives can happen on the interior of our bodies as much as on the exterior so this is why for some of us we donīt have the throat closure.  However, that doesnīt mean we arenīt in danger!!!!   The danger is due to the blood pressure fluctuations and with Dr. Luis Escribanoīs REMA protocols he indicates that the time to step in with the Epi-pen is when your BP drops and you go into anaphylactic shock.   So, for you, that must be your guide.  

As to panic attacks.....BUNK!  If only those doctors were to go through what WE go through!  They'd take it a great deal more sympathetically!!   Those doctors are clearly UNIFORMED about mast cell disorders and how these patients present.  

So, what do you do?  You need to have a copy of the REMA protocols with you.  Give a copy to this doctor of yours and ask him for instructions as to what you need to do.   The protocols are here and you can download them.  Your doctor will give you instructions as to what you need to do if you need to go to the ER.  

As to going to the ER, this will, hopefully, become a thing of the past!  When you are on the right medicine regimen the anaphylaxis diminishes and you become more stable.  So, let's hope that your doctor's treatment will give you the stability you are needing.

I hope this helps!

Lisa


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Re: MCAD
Reply #3 - 09/25/13 at 16:37:19
 
Hi Alice!   Welcome to you too!   I hope that we can help you find some answers and improvement.


I wish I knew how to help you!   I'm going to ask Ramona to step in here because she, too, is diabetic.  

But the only thing I think I can say is that seeing that you are already Dr. Akin's patient, I would think that your endocrinologist and he should put their heads together in trying to find some kind of medication you can take.  I would think that they should hospitalize you for several days and try the different meds until they can get one which you are tolerating.  This would seem to me the best way to work with this.  

however, I would also ask Dr. Akin to speak with Dr. Castells about this because she's the master as to medicine intolerance issues and perhaps she has a means to desensitize you to whatever is creating issues for you so that you can take your meds.  It also seems to me that you are not on the right doses and that you are needing higher doses.  Dr. Castells has begun putting some of her patients on 3 doses a day instead of the usual 2.  I've had to do this at times and it can really make a world of difference!!

Sorry I can't help more!  I think that Ramona will pop in here soon.  She's having computer trouble but will stop in, I'm sure.

Hugs!

Lisa
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Re: MCAD
Reply #4 - 09/26/13 at 05:54:40
 
Thanks Lisa for your reply and help.
Well, the funny thing is.... I DO have anxiety!  But then I guess who wouldn't after not knowing what you are going to put into your body will make you feel awful or not.
Dr. Bayuk didn't ask me about diet because he says he knows that "we" (mast cell folk) can have food paralysis because food is/can be such a trigger. I basically said "I get the fear factor".  Yay!  He said, eat what you can, as you can and once we get you stable we'll see about adding more.
I can say that just the allegra alone, over the course of 3 weeks, completely stopped my diarrhea. This has allowed me to gain back 3 lbs. I had lost 17 since February. I'm only 5' and normally run about 117-120 anyway.
I've still had a few reactions but they've been mild compared to the past: no cold chest, no full body shaking, tachycardia, gastro symptoms.
Just a bit of throat tightening, cheek/nose getting pink, and thigh muscle weakness- I take more allegra, a bit of clonapin (yes, for the anxiety component---but it also has anti-histamine effects!), some vit. C and drink my hot water.... so far so good.

On the anaphylaxis: I wonder... the 1st ED visit was when I was going through a great deal of stress (it had been months of it) and my BP was 60/40. The medics were asking "what did you take???!!!" I had only taken the 25 mg of Zoloft my psychiatrist had given me!
the 2nd ED visit I was in FL on vacation; we were going to leave in a few hours and were having dinner at a brewery w/ friends. I think I ordered a beer and we were having pizza- uh, and I had been eating lots of chocolate all week!  I don't remember by BP I just remember that after one sip of beer and one bite of pizza I got cold, clammy, sweaty and was in the bathroom for the next 30 min w/ shaking, sweats, dizzyiness, tight throat. We finally got to the ED and they gave me IV fluids and 1 Benadryl. I still shook for HOURS after that and was food paralyzed for months after. I lost tons of weight. I remember trying to drink a can of pineapple juice and after 2 sips shaking at work (I was working as an ENT physician assistant - and we also did allergy!) that whole day.
My BP normally runs 60/100.
then there was the big miscarriage where I know I must have gone into shock. They told my husband that 10-15 more minutes I would  not have made it. After 3 units of blood; 7 bags fluid; general anesthesia and a D&C let's just say, things have not been right since.  I've never gotten back "out" where I was eating normally. I actually found that I no longer tolerate heat or I get really weak and lightheaded.

Well, that's all I have to say about my experience that made me wonder if I was in anaphylaxis. I have taken my BP when I feel off but it's never been super low again. then again, I've not tried during a huge episode. I suppose I could try. The last one was 6 weeks ago after making the mistake of drinking lemon juice... oye!

I guess I'll be working on learning more about how this can present masto patients.
I did see those guidelines - they are great!!! I will print them and carry them.

Kelley
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Re: MCAD
Reply #5 - 09/26/13 at 15:56:52
 
Oh my Kelley, you've named so very many triggers that you are unaware of, but to those of us who know, red lights, sirens, alarms, and every other kind of warning advice go off BIG TIME AND SCREAMING!!!!!! Shocked Shocked Shocked Shocked Shocked Shocked Shocked Shocked Shocked Shocked

Pizza = cheese, tomatoes, gluten in bread.
BEER!  = Alchohol!!  BIG NO NO!!
Stress =  mediators released from the stress system always trigger mast cells for the MCs are full of receptors for these mediators!
Chocolate =  trouble if you are on the edge
Pineapple juice + lemon juice =  acidic and fruit enzymes
Travelling = physical stress
Florida = heat
Restaurants = foods prepared ahead of time and with MSG and other ? ingredients
miscarriage = birth is physically stressing and involves MCs in a very normal process.  in a masto patient without pre-medication, hemorrhage could easily ocurr since the MCs have been triggered to help with birth.  
ANESTHESIA!! = danger! danger! danger!!!!
D&C  = surgery - the body must heal and to heal requires MCs.

HOLY COW!!!   Shocked Shocked Shocked Shocked Shocked

Kelley, my masto came violently out of hiding following major surgery - a histerectomy.  I went into the surgery clueless as to disease and came out of it with somebody else's body!!!  In reviewing that surgery a few years later with my gyno we understood a great many things that he had, at that time, thought was nothing way too unusual.   I had undergone excess bleeding during that surgery.  My daughter, upon seeing me wheeled into my room after the surgery exclaimed "WHY IS MY MOTHER SO WHITE?!"  While I was still hospitalized, I was given an IV injection for pain - a narcotic.  I immediately broke out in hives and had a huge hematoma on my arm at the site of the injection of the antihistamine which I was given shortly thereafter to counteract the reacting to the narcotic.  A few days following my surgery, I began to feel a heaviness, but no pain, in my abdomen.  It began to weigh and bother me and I began to find it very uncomfortable to sleep on my back and began losing sleep.  I was in pain and not being a back sleeper the loss of sleep began to take its toll and I began to feel that I was about to faint immediately before slipping into sleep - so I fought sleep even more!.  After about 4 or 5 days of this, where I was then going through bouts of dyspnea, I was an absolute wreck!  I had called my doctor and he ordered a relaxant and was expecting to see me in two days for my first review.  So I kept dealing with the situation, trying to get sleep when I could.  I had no real pain outside of the typical abdominal incision so I didn't feel any need to go running to the ER and neither did my doctor (he was checking up on me).  When I went into his office for the 1st review, I had been sitting in the waiting room and by the time I had to go into his office I was with dyspnea and really struggling to keep my cool.  He hospitalized me immediately!   He ruled out infection and anemia and the only other option was suspicion of a pulmonary embolism.   I'd been having hipertension prior to the CT with contrast, but upon injecting the contrast my BP plummeted and I fainted away!!!  I vaguely heard my angiologist explain "OH MY GOODNESS!!   WHAT IS THAT?!"  I had a very large subcutaneous hemorrhage and was immediately put into the ICU for 2 days observation.  No pulmonary emoblism was found, thank God, but what my gyno thought was that I had a typical subcutaneous hemorrhage which can come from the slight bit of plastic he did in order to clean up my abdominal incision.   I was released after 4 days hospitalization only to return again in another 2 weeks for another 2 day stint and then one last time again 2 weeks later for another 2 day stay!!!!    

In analysis, the hemorrhaging during surgery itself was caused by the stress that surgery and the anesthesias had created since I went into this surgery totally unprotected by any pre-medications.  The allergic reaction following surgery was to narcotics, a well known MC degranulator!  The huge bruise on my arm was caused by the needle injecting the antihistamine.  The antihistamine probably kept it from becoming a really bad situation.  I was so weak, so severely stressed by the surgery itself, it's only God's mercy that I hadn't had any worse spontaneous hemorrhaging anywhere else.   Complete bed rest is what kept me safe, I believe, but upon returning home, I was uncomfortable in my bed and could not sleep properly and with the loss of sleep, as well as the up and down of getting in and out of bed began to wear upon me.  In losing sleep, the MCs were triggered (not enough sleep is a MAJOR TRIGGER for us even though the vast majority of us don't recognize it!) and they, in turn began putting me into small crisis events of dyspnea and fainting, which in fighting, I was only losing more sleep and putting myself further out over the edge of no return.  In going into my doctors office for the 1st review, I had spent the night without sleep (for fear of the fainting) and just having to shower and dress and go into his office, this tipped me over the edge and I went into anaphylaxis with dyspnea and hypertension being the major symptoms.   I was so weak and had lost enough blood that I was not even able to flush!  The fact that I was already anemic due to the recent surgery masked the anemia caused by the internal hemorrhaging, so my doctor couldn't see it!   The contrast from the CT is what sealed my fate and put me into syncope immediately and also made my BP drop so much that the doctor couldn't find a periferal pulse!   The subcutaneous hemorrhage could have been nornal, but not the amount of blood I had lost!  The forced bedrest in the ICU is what helped all of the reacting come to halt and yet in returning back home, in returning to much of the same pattern of not staying in bed, only provoked the reacting again and this would explain why I returned to going through anaphylaxis about every 2 weeks and needed hospitalization once again!

Kelley, once you are able to understand how the MCs behave and what can trigger them, you, like me, will be able to review situations and say, THAT'S THE MASTO AT WORK THERE!!!    Yet, in learning more about masto and how defective MCs behave and learn to identify your triggers, you begin to see how you can taylor your lifestyle and improve upon it by avoiding triggers more adequately.  

Your doctor is 100% right, on the right meds, things will indeed IMPROVE.  So, follow his advice, it sounds like he knows what he's doing!!!

Lisa


ps - the high histamine levels create anxiety in some of us Kelley.  And when you are not properly medicated, you think it's a "panic" attack, but in truth, it's just a flood of histamine in your brain!!!  This is why we get brain fog prior to a crisis and can't think straight!!!   In having enough meds, most of that dissipates along with the other emotional issues that can happen in masto.

pps - KEEP READING AND KEEP ASKING QUESTIONS!!!! Cheesy


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Re: MCAD
Reply #6 - 09/27/13 at 16:11:09
 
WOW. JUST WOW.

Did I mention that before my first big "crash" 15 years ago I had moved out to Albany, NY to go back to an intense PA program- and then 4 months into it left a 10 year relationship, then had a trip to FL in May, then had to support a good friend through the breaking off of her own marriage just 6 weeks prior to the wedding date and THEN the icing on the cake  (I'm sure) was me offering to be her roommate again which meant moving in the middle of a summer semester of school?  That was a bit of stress.... add to it lack of sleep, lots of coffee- oh the list goes on.

Can MCAD symptoms come and go?
Can they be triggered by hormones?


Lets go back even further. In college I had two episodes following eating a particular cereal where I turned bright red from toe to head w/ itching  (relieved by 50mg Benadryl). Each was during my menstrual cycle.  I was convinced this was allergy to food. My PCP, at the time, suggested perhaps it was a preservative on the raisins.  I thought this was interesting but why not every time? So I just stopped eating raisins during my menstrual cycle!
When I saw an allergist after my m/c (because I was convinced I was allergic to egg- but it was probably the small bit of chocolate that triggered me not the crumb of gf cake) he said, regarding my episode in college, "no, not a food allergy. Allergy is reproducible every time" and then did allergy testing and I was negative. Hmph.

My first pregnancy ended up being a c-section after 3 days of labor and no sleep. I shook like crazy w/ epidural----and then LOST MY VOICE AND UPPER BODY STRENGTH when I was given a double dose of the meds prior to the surgery. Guess that was the masto then too?
My last thought was "God please, don't let me die".  He didn't. Instead He saved us both! My next memory was 4 hours later.

The next day I had a massive headache w/ nausea upon standing and it lasted for 7 days. I was SURE it was a spinal headache but now I wonder... was it a migraine from all the meds?

Boy, is it any wonder I'm so fearful of taking any medication...? I used to put myself on anything!

Next 2 births were VBACs. Noah was super quick (compared to 3 days!) but wow- lost of pain w/ healing...turns out I'm latex allergic so the MDs gloves caused lots of unnecessary pain, swelling, and itching.

After the birth of our last son, Liam, at 6 months post partum my period returned (sad for both of us...cuz my milk dropped) but almost immediately I started having shaking episodes. The 1st one lasted almost 24 hours and I was super hungry for weeks on end. I gained nearly 10 lbs. All tests including a work up for ......  pheochromocytoma and carcinoid tumor were negative. Thyroid was fine.
The interesting thing about these was they were like clock-work: 7am almost every day. I figured it was hormonal but this time adrenal hormones w/ cortisol spiking. This lasted for a few months as well.

Again, no one knew what was wrong. My husband, God bless him, said, "You can't do this anymore. No more babies.". I replied, "What if it is just me and not the babies?"  Guess I was right.

So, I'm wondering about the Masto stuff coming and going because I've had some really good periods but they've been fewer and farther apart. I think I did myself a huge disservice as I was putting myself back under a bunch of stress in Dec/Jan and then I stopped drinking milk and just was taking yogurt (for some other "issues")---but now I see the issue w/ fermentation - yikes.

I have so much to learn.

THANK YOU SO MUCH for your help!

Kelley
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Re: MCAD
Reply #7 - 09/27/13 at 16:27:26
 
Just to also say: And my husband was right... I can't even begin to imagine the stress on my body now pregnant, nursing... or both!
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Re: MCAD
Reply #8 - 09/27/13 at 18:05:41
 
Kelley, I've been reading an article along with one of my doctors to whom I teach English.  I live in Brazil and have found that I can use medical articles to teach English to my doctor students since they can read fluently medical liturature in English.   The article we are studying is on FODMAPS.  This article came to my attention because someone on one of the other masto sites raised questions as to whether this diet might help masto patients.  In reading about this and in discussing it over with my gastro a ton of mysteries were answered as to why we go through so much gastric distress and are triggered so easily.  It was the literal light bulb going on in the dark for both me and my doctor!!!   We both learned a great deal and I'll tell you a bit of it which I think will help put the light bulb on for you too.

Our doctors know the purpose of the MC in allergy and the body's defense but they are only learning now the other roles the MCs have.

The MC is a sentinel cell -it is meant to be always in places where the body is exposed to the outside so that it can defend the body from threats of any kind - extremes of heat, cold, noise, light, physical vibrations, etc.  the MC is designed to be sensitive and trigger by anything which the body perceives is a threat.  So when you get a good scare, mediators from the stress system are released and the MCs, being full of receptors for these specific mediators, will then trigger and release their own mediators.  So strong emotions, physical stress of any kind , and exercise is stressful to the body as much as sex is or giving birth or riding in a car or doing shopping.  In a normal person a day at the mall can leave them exhausted, so what do you think that will do to a masto patient????

There are many medicines which are direct MC degranulators -opioids,NSAIDs, aspirin, narcotics, decongestants, muscle relaxants, etc!!!  Contrast is a horrible MC degranulators!   Some patients can tolerate these thing and they may have a higher threshold of sensitivity, but these items still are know degranulators so the potential is always there.  I for one am super sensitive and will react horribly!!!   I will react to the EFFECTS of medicines as well, so although a laxative itself will not trigger me, the action of the medication, when it forces my intestines to move will put me into anaphylaxis!  My gastro must hospitalize me as a precaution!

Invasive procedures are dangerous for us especially those of the lower GI in manipulating the intestines.  The entire GI tract is FULL of MCs!  But by invading the body with scopes or with surgery you are touching very delicate mucus membrane tissues, and that's not good.   This is why even intercourse can creat reactions in some of us -fist because histamine is released with orgasm and you need it in order to have one, but just the physical action and the mediators released and getting hot and worked up, all of this physical activity is like running a marathon! Some so us must make sure the room is cool or there is a fan blowing, etc, or we get sick!!!   Very complicated!    Dr Castells said that for those of us who have these issues by taking an antihistamine half hour prior this should be sufficient!

Now when we get to food, here's where things get tricky! Again, the GI tract is full of MCs and they are designed to help protect the body.  When you boil the entire digestive process down it's really nothing more than chemical reactions.  When you look at foods as chemicals you begin to gain an understanding.  The FODMAPS diet, which I will not explain in depth, is a diet consisting of avoiding certain kinds of foods which create chemical reactions and will directly trigger the MCs.  Although the diet was NOT designed thinking about what would or would not trigger the MCs, they have indirectly found and studied how the MCs are involved since they are considering reactions to food, both allergic and non-allergic reactions.

Certain foods like cabbage and broccoli and beans naturally create gases in the digestive tract because of the chemicals release in the decomposition process.  Other foods beak down into sugars which will then trigger the MCs -lactose, fructans, and a few others.  Then you have gluteus and salicylates,etc.  some of us are sensitive to these items others not and it's really a matter of identifying those things which trigger you and avoiding them like the plague!!!   I recommend seeking out this article and studying it for yourself!!  Yes, loads of "Greek" but just google the words you are unfamiliar with

Fermentable oligosaccharides, disaccharides, monosaccharides and polyols (FODMAPs) and nonallergic food intolerance: FODMAPs or food chemicals?
Jacqueline S. Barrett and Peter R. Gibson


As to having waxing and waning periods of reacting, YES!!!!  We are able to do this, but masto is at this time incurable.  It is a clonal disease caused by a defect on your MCs.  This includes MCAS.  The researchers are aware that there comes a time or a place where the disease is latent and will only show itself from time to time when provoked and then go back into hiding.  They are also aware that there is a point of activation.  What they don't know is how or why or when, etc.  you will not find this being stated in any medical article.  I know this because I talk with the authorities.  I am working with Dr Luis Escribano here in Brazil to start up a Masto Reference Center and these are things I've had the opportunity to speak with him about.  They too would like to understand this because it might help to find those patients who are not yet activated.  You can indeed find stability and improvement and it mainly depends upon YOU!!!  You must study and learn in order to find and reduce your triggers.  Dr Escribano told me that it is very important that the patients be allowed a free hand with threir meds so that they can then then when they feel the need in order to stop sny outbreak reacting right as it begins!!   By doing so, by keeping the self from going over the edge, this prevents de granulation which will I turn trigger more reacting!!!  This is how we can get into trouble and a vicious cycle of reacting!!!   So a kind of remission can be found in pinpointing the triggers and avoiding them and I keeping your stress down to a bare minimum, etc.

Well, this is pretty lengthy, but I think I gave you a bit to think about.  If you have any questions, don't hesitate to ask!

Lisa

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Re: MCAD
Reply #9 - 09/28/13 at 02:20:40
 
Again, thank you! I'll check out the article. I was at a GI specialist in Boston because I wanted to check on the celiac gene I carry. I've never been proven Celiac positive but I'm gluten free... except when I bake w/ it for my family on occasion- so I don't eat it but I touch it and suppose just by the nature of flour I breathe it.
She suggested I was fructose intolerant and wanted me to do a fructose tolerance test. We set up the test and then I called to see what the source of fructose might be.  I eat a spoonful of applesauce w/ each meal to get in my digestive enzymes so I figured if the source was apples I'd be "okay".  The manufacturer would not say more  than "fruit" source. Another company the man thought it was corn (NOT good for me).
 
So I made an apt. w/ local GI and JUST cancelled it yesterday and it was for Tuesday!!! I called to see if she was familiar w/ MCAD and let her know who I was seeing. She said I could come in if I was having GI issues but otherwise I was clearly seeing the right MD for the MCAD.

Would it be a good idea to have a GI specialist in the mix?  I certainly wouldn't run to be scoped at this point; nor would I do the gluten challenge.  But this woman is also out of Harvard and Brigham and Women's w/ an interest in woman's health and nutrition and celiac!  She seems like a good fit for me should I need a specialist.

My diet right now:  broccoli, carrots, potato, occasionally beets and for meat: chicken, pork and beef. I can eat more chicken than the other 2 meats.  I also eat some chicken soup which has garlic and onion and celery and homemade stock. I know this is "iffy" since it cooks and this raises the histamine levels...

Part of me wonders about removing the broth but since I'm not drinking milk it is my source of calcium.  Also, since removing milk I've not yet been able to add it back in. And I shudder to think of removing anything else lest I can't add it back!  I'd love to simply eat some rice and oats again. Never mind a GF pancake or muffin!

The kicker is that after Noah's birth- by 9 months out- I was eating "everything": wheat, fruit, veggies (though not orange squashes - never got that back), rice, corn, oats, millet.

I know with time it may be possible to add a few things back and I'm continuing to move up on the gastrochrom. This is still an early stage of treatment for me and I have a feeling that I'm on the "mild" end of the MCAD spectrum after hearing/reading many stories here.  Though, after learning more about anaphylaxis I'm more certain I've been in stage II more than just the 2 ED visits... but managed them at home- by the grace of God.

I found the link on the TMS website w/ all the medical reference articles. I look forward to working my way through them... I'm still stuck as the data disk from the society won't be read by my computer.  Cry but c'est la vie!  I've been taught how to research and I'm not afraid to do it!  Grin

Okay, more questions. Since we need histamine to function- even for digestion- does taking the antihistamines:
1- cause our bodies to make more histamine?
2- cause our bodies to make more receptors?
in either case causing us to continually need more of these meds to get the same affect they one gave?

Thank you for all that you and others are doing in researching this!

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Re: MCAD
Reply #10 - 09/28/13 at 06:04:48
 
kesasur wrote on 09/28/13 at 02:20:40:
Okay, more questions. Since we need histamine to function- even for digestion- does taking the antihistamines:
1- cause our bodies to make more histamine?
2- cause our bodies to make more receptors?
in either case causing us to continually need more of these meds to get the same affect they one gave?



Answers:  1 -  No.  we have gastric issues because our levels of histamines are overproducing stomach acid.  The antihistamines help keeps the levels more normal.  What causes our bodies to produce more histamine are triggers.  Our MCs are dysfunctional and they are releasing too much histamine as well as many of other mediators.  Histamine happens to be the mediator of largest quantity, but it's certainly NOT the most potent!  There are mediators there like PAF (platelet Activating Factor) which will create a doozy of an anaphylaxis with just the slightest amount!  We can't live without any of these mediators for when they are in balance, they help our bodies function in a great many ways.  But in our case, the dysfunction on the MC membrane is what causes those MCs to leak and to be trigger happy and this is why we go through so much grief.  

One thing the authorities openly state - The symptoms DO NOT reflect the severity of the disease.   Masto breaks rules and this is one rule of medicine it breaks in that you can be HORRIBLY sick and housebound and even bedbound and yet your form of the disease is so very mild that the vast majority of doctors will say it's all in your head!!  The mediators are the trouble, and they create horrible reactions, but that doesn't mean that they are going to kill you any time soon!  The patient with MCAS will life a normal lifespan and that's because MCAS doesn't seem to be a prolific form of the disorder and the malignant cells don't end up invading the tissues.   So, even though you may think it's "mild" it's really just that you genetic makeup has influenced that you don't go through as severe reactions as some of us do.   My diagnosis for now is MCAS but the researchers question still whether some forms of MCAS could be a pre-SM or not.  They aren't sure.  However, I'm one who goes through what Dr. Escribano calls "Stress Anaphylaxis".  Anything which stresses my body can put me into the hospital!  Even a strong scare!  I experienced a loss a couple of years ago and the heavy crying it created put me into anaphylaxis! I did a glucose tolerance test and this put me into anaphylaxis!  A BMB put me into syncope for 2 hours!  I'm that sensitive!  Why?  Good question cause I'd sure like to know, and yet I can eat pretty much whatever I want and have very few issues with things unless I'm reacting and then I must avoid cheeses, chocolates, tomatoes, etc.  So as long as I'm stable, most foods are fine for me.

2.  Does it create any more receptors?   Wow, what a great question!!!  That's one for the researchers, without a doubt!!!    Did you know that they are still discovering new receptors on the MCs??!!!   I was amazed to find this out recently from a biochemist who specializes in mast cells.  

It's a fascinating disease Kelley, and an ever changing one for the patient and the doctor.  If you can learn how the MC behaves, then this is half the work of studying masto.  If you can learn how a dysfunctional MC behaves then you have masto to a T!!!
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Re: MCAD
Reply #11 - 09/28/13 at 10:16:37
 
Well, I've been told I never do anything easy... so it suits me to have a disease that does not play by the rules!!!!

Oh brother... So, stress for you, food for me, heat and exercise for someone else...   And of course I hear this one all the time, "Wow, you look great."  I've had some friends w/ chronic illness (EDS, MS, etc.) and didn't get it- but now I'm getting a taste of "it".

This makes me want to crack open my immunology and physiology books but they are probably WAY out of date.

Thanks again!
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Re: MCAD
Reply #12 - 09/30/13 at 06:26:24
 
Kelley, send me a PM with your email and I'll gladly send you plenty of research which will upstate you.  You are right, your books are virtually useless!!!!   However, Heather has access to a recently published book by Dr Castells and that's one definitely worth reading!!!!  

Lisa
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Re: MCAD
Reply #13 - 09/30/13 at 12:50:12
 
oh, oh, What is the name of the book???

Cheesy
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Re: MCAD
Reply #14 - 10/01/13 at 16:32:07
 
It's a book on allergies.   Google her name, Dr. Mariana Castells and see what publications she's got going.  It's RECENT!!!
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