whole torso affected, pain etc etc etc

Hi, Pat, I'm hearing you!  Pat, if I could tell you HALF of what I've been through, you'd cry first with me and then we'd sit down, on the floor mind you so that we wouldn't hurt ourselves, and the laugh ourselves totally silly at the absurdity of it all!  Living here in Brazil I've had Mui Macho doctors to have to deal with!   And I'll let you in on something.  That Thousand Faces document that you mentioned on the site here, I'm one of them!   That document was put out by the Canada Masto group and I've been a member there for 2 years.  I've gone through hell with doctors and  it was all due to the fact that my hysterectomy brought up my disease.  I must have had about 30 or so doctors say psychosomatic at me because they kept tripping over my uterus!  literally!  They could not believe that a 47 year old woman with 3 children and a career could possibly VOLUNTARILY choose to remove her uterus for sound medical reasons and NOT have emotional problems and so my poor gyno had to take my case back into his hands and research my symptoms and even do some testing for them because he couldn't get a SINGLE colleague to take my case seriously!   I had so much trouble with doctors that I was forced to become my own medical investigator just so we could investigate all the things that were wrong with me.  I began to even REFUSE to see male doctors due to their biases against women and I still don't trust them!  I choose a woman over a man almost every time!  Can you imagine being the wife of one of those kinds of doctors?!  ugh!  Yet my women were much more open to helping me and they didn't seem to mind me pushing on and they even congratulated me and suggested that I go back to medschool to study medicine.  It's not been easy, but it has been rewarding.   Yet my experience has taught me, once you end up with a doctor leaning towards the psychosomatic it means that he has already closed his mind to you and that unless you can come back with some substancial proof, he's not going to hear you!   As much as you like that one doctor, he's a goner as far as you're concerned, so hang him up for now.

Now, as to you.  I went through a couple of reflux attacks that scared the willies out of me recently and the pain was INTENSE!   And the thing is that it triggered the masto and I ended up with a double kind of reaction to the point that I was so confused as to what was happening.    A Reflux attack can mimic a heart attack to the point that they will keep you overnight in the ER to run tests on you!   Yet, it's not something you can just brush off. 

 Listen to your body  -   Distended, Full, Vomit, Pain under the Sternum  -  all of this is gastro related symptoms.  You need to do some serious testing and try to find out whether you've got a physical problem like a hiatal hernia or whether its more related to the gastric issues that masto can call.  There should be a series of exams done on you.   You need a Manometer - which is an exam which studies the esophagus and it's muscles and how they are working.  You need a PH meter, which is an exam which studies the amount of gastric juices and their acidity levels in your stomach.  An endoscope will look not only at your stomach itself and it's lining, but it's the best way to see as to a hiatal hernia and whether this is a problem.  A colonoscope, of course, will look at the lower GI tract and see how things are there.   When they do the endo and colonoscope your doctor should take advantage of those exams to take small biopsies all the way down the line, even if they don't see "anything" wrong.  Then you should take those biopsies and have the immunohistochemical testing done on them for masto and see what the tests reveal.  This is what should be done more often on ALL of us, for I think that it would end up proving a great deal!  

My exams proved a lot and as the pieces of my puzzle have been brought together, especially after going through the immunohisto testing, it has revealed the face of my disease.   As it turns out, Pat, you can have many things indicating masto, even though you don't fall directly into the criteria for masto!   Those WHO criteria are very specifically related ONLY to the neoplastic form of the disease.  This is why Dr. Castells and those who think like her are fighting to have MCAS recognized for they now see that TOO MANY of us are not fitting into that ONE CATEGORY!!!  That means that there is much more going on with mast cell disorders than they originally understood and now that they can't deny it any longer, they've got to make provisions to widen their horizons!  It's not just a matter of fitting into a diagnosis, here, Pat, it's a matter of finding out what is wrong with you and this is how you need to think and approach your own case.  If we all happen to fit into the diagnosis, great, but what if you don't, it still won't resolve your problems!  And until they know what is wrong with you, and piece those puzzle pieces together, then they won't be able to treat your illness, no matter what is bothering you!  This is why you need to go ahead and do the BMB cause whether it's now or a year from now, the outcome of that concensus won't change anything.  It may do no harm to wait on the BMB cause that's something that may or may not help, but in my case it did.

My tests revealed the following:   The Manometer showed that my esophagus is working just fine - so the reflux is not due to a physcial muscular problem there.  But the PHmeter showed that I have reflux during the day but not at night.  This is NOT normal for people who have GERD, true GERD have reflux whenever they lie down, the gastric juices when we recline will roll up into the esophagus and this is what causes the pain.  But masto causes the reflux during the day because of how the disease interacts with us and gets triggered during the day!  At night we're resting and so...things are quiet.   The endoscope showed that I don't have a hiatal hernia, but I did have gastritis!  The colonoscope showed no polyps or problems, but did reveal diverticulits.  Diverticulitis is a symptom of masto, as is the gastritis!   They are "side effects" of masto, caused indirectly by the disease.   Yet, it was the biopsies that revealed the most important findings.   My dermatologist is who headed this investigation and she gave orders to the gasto to biopsy all the way down the line and to test it all and these biopsies are what revealed the disease.  We found some elevated numbers of mast cells, but not enough to say it was masto.  But it was the lymphocytes which did it!  Most doctors don't know about the involvement of the lymphocytes with mastocytosis and it threw my hematologist totally for a loop, she didn't know what to do!   Studies have shown that when you have aggregates (groups, clumps) of neoplastic or aberrant mast cells, you will also find clumps of NORMAL lymphocytes.  The immunohisto testing is what shows whether the aggregates of lymphocytes are NORMAL or ABNORMAL.  If they show up that they are abnormal, aberrant, then that means you've got lymphoma, a type of cancer.  However, it's not normal for normal lymphocytes to clump together, but masto does this.  I asked Dr. Castells about this and she said that the same substance PAF, which causes the aberrant mast cells to clump together also does this to the lymphocytes.  My tests revealed that my lymphocytes in my stomach all the way throughout my instestines were aggregates of NORMAL lymphocytes!!!   And, my BMB also revealed this very same thing, lymphocytosis!   We could not find the mast cells, and my hematologist most likely goofed up totally on my bone marrow biopsy and this is why we could not find the mast cells themselves, it was also probably contaminated by her because she prepared the aspirate and put it on slides for the pathologist and this is NOT how it's to be done!   Yet, in my case it was the lymphocytes which have INDICATED that those mast cells are there, we just can't see them for some odd reason.  I've been diagnosed with MCAS.

So, to close up a long post, Pat, it's worth doing these tests and I'm surprised that nobody has done these before on you.  If you are vomiting up foamy stuff, that needs to be taken a real look at to see what is going on there.  Pain is a REAL symptom and they need to investigate you further.  And, your gastro needs to give you a proton pump like omoprazol or something.  I'm on ranitidine and that's good for daily use to keep down the reflux, but there are days when I also will take the omoprazol to effectively deal specifically with the gastric juices for there are days when it's not able to be controled by the ranitidine and I need extra help.  This seems to work well for me and when I can feel an attack coming on then I pop that omoprazol and it really gives me quick relief!

I hope this help!

Lisa

Pat, I just remembered something VERY IMPORTANT!    Whenever you do ANY kind of invasive procedure, and all of these exams are invasive,  you MUST be premedicated for them!!!   This is VERY, VERY important for when the tubes go into us, especially the colonoscope, the mere moving around of those tubes is like rubbing your skin on the outside, only it's rubbing the tissues on the inside and this is a TRIGGER!!!   It stirs up the mast cells and it can trigger you into an attack!   Trust me, even if you've gotten through these before, don't trust your body, cause the next time it could happen.   I did two transesophageal echocardiograms both of them 3 months apart.  I was not premedicated for either of them cause we didn't know I had masto.  The first one I was sedated for and the doctor was a woman and much more gentle.  I didn't trigger.  The second one was done by a brute and he didn't sedate me and he was rough with me.  I triggered on the table and went into anaphyalxis!  They almost had to hospitalize me and I was reacting for a week afterwards!  

So, use Dr. Escribano's protocols, the REMA protocols to premedicate yourself before doing any of these exams and you should sail throught hem without a hitch!

Lisa

I have no advice but wanted to send along some {{{hugs}}}}

Hi Patersonic,

I'm sorry you're having such a difficult time... I think you're smart to look for other things.  Just because you have a mast cell disorder doesn't mean you can't have something else too!

Until recently I was having a lot of headaches (almost every day) and pain in my shoulders, hips, knees, and the small bones of my feet and hands.  Yikes.  Based on the drug regimens other people have listed, I decided to try adding an extra H1 antihistamine to my mix... now I'm taking 10mg of Zyrtec at night and 10mg of Claritin in the middle of the day (both are available over the counter in the US).  I haven't noticed any side effects and I'm no longer in so much pain!  My point of view is that it's better to take an extra antihistamine than to take a lot of Tylenol (which can damage your liver).  Unlike my doctor, I was NOT going to just "wait and see."  Feeling like you have the flu every day (minus the fever) is no fun... especially when you have two small children.

BTW... I've ruled out all connective tissue disorders (such as lupus and rheumatoid arthritis) as the cause of the pain... my allergist called me "disgustingly healthy."

Lisa, thanks so much for such a detailed response. Ah, so you are the woman with the hysterectomy in "the thousand faces of mastocytosis".... you're story was incredibly moving and I related to much of what was documented aside from the hysterectomy
I burst out laughing when you wrote " they kept tripping over my uterus, literally".

That's great info regarding the manometer, I had no idea of these kinds of tests for the esophagus.

Yes, I'm aware of Dr. Escribanos protocols and have emailed them to my physician as well as the immunohistochemical stains for mast cells as i have a feeling that the local country hospital may not cater to this.
My physician still hasn't called regarding a colonoscopy. I don't want to cold-case him about it as I know a few people have died up at the local hospital and they may well be his patients.

Today I saw a new GP, yes a woman, she of course couldn't do much today as it was such a short appt, but is going to access all files from everyone to get an overview of my health from the specialists point of view. That may be interesting or just more frustration, guess I'll know in 2 weeks!!! Until then I go without anyone currently looking at me nor giving me an examination.... it's just ridiculous!

I'm just so terribly frustrated... I actually feel that I am being discriminated against as I disclosed to these specialists at Royal Melbourne Hosp that I have a mental health history, 2 major depressive episodes, the only reason I told them this was due to contraindications with meds.... even though I'm on the lowest dose possible for Zoloft. Trust me otherwise I never would have mentioned this, I know too well the stigma towards anyone suffering or who has suffered serious mental health issues.

I still feel terribly inflamed in my whole torso, but it is lessening, no where near the intensity that it was at. Phew!! I'm very exhausted, but at least I can eat now. Still only doing 3 wee-wees a day and usually I'm a great pisser! Had diarrhea twice today. Hopefully things will start to settle more over time and the pain will keep gradually declining.
I think I need to develop a protocol for myself for taking more meds when this kind of flare happens ... I do get worried about having a reaction to them though.. and which ones of which do i take more of.
Have you all worked this out for yourselves through trial and error?

Cheers everyone and hope your day/night is an easy one.

Patersonic,

I get that torso thing too every once and awhile.   Does it feel like somebody put gas in your belly and you are puffing up and your diaphragm is hurting?  Weird pains all over your chest and stuff?

I got worked up all over for that too.  I even had a heart echo... nothing.

I think it is inflammation.  I usually have gi trouble with it.  Sometimes it feels like somebody is poking me in the ribs with a knife or something.

All workups have been negative for everything.

Blech, I hate when that happens.  Mine comes and goes.  I usually get it right before I get sick with something, or if I am not taking care of myself and get tired out... like I am doing right now.

Patersonic,

I just wanted you to know I was thinking of you and hoping today was a good day. 

Susan

Thanks Susan, that's very sweet
wish I could say i'm okay. i'm far from it, can barely type it puffs me out. had to call the ambulance 3am thursday morning, thought i'd had a heart attack.. hospital checked enyzems for heart doesn't appear i had a heart attack, thankdully. think it was massive medtitor release body went into shock. all ops of course come back as though i'm a picture of perfect health.
i think i've got severe intercostal neuralgia....yes i am diagnosing myself Royal melb are useless for me. a week ago they felt my large bowel was inflammed. the docs last night saw how bloated i was and they couldn't palpate much as i was in so much pain whole torso. if the royal melb got onto this when i was there and took me seriously this could have been prevented but apparentllly its all psycho somatic. honestly i would let rip many swear words in here if i coudl at the momnet.
now i'm just gutted and can barely make it to the toilet when the diarrhea hits.
oh the joy
how are you Susan? hope you're doing good :)

Hi. Your symptoms of bloating, the need to vomit, and diarrhea can all be mast cell symptoms. When I was first ill, I had all that and more! It took about 4 weeks for my body to "heal up and calm down". What meds do you take? If it were me, I would be really increasing my meds and just lying in bed watching movies and reading books, even if it took days to calm everything down. Maybe you are not on the ideal meds?

I think you're right Deborah!!!  It sounds masto to me, that or reflux and the reflux is masto caused in our cases!  So, deal with the masto, and you're dealing with the overlying symptoms!   Pat, google excessive histamine causes and gastric problems.  You'll see that the overload of histamines is what triggers reflux and all the intestinal woes!   It sounds to me like you're needing more H2 blockers and a proton pump inhibitor.  Or gastrochrom, but I've heard that's outragiously expensive.  The h2 blockers and proton pump inhibitor are cheaper and if you put in ketotifen in with that youve bascially got gastrochrom in those 3 meds.   Deborah's probably hit it on the nose and you should have your doctors review this with you, but in the meantime, up your h2 blockers and go be a couch potatoe for a few days!  Queen for a day routine, only for an extended time period!   I hope it helps you feel better!!!

lisa

Hi Pater,

So sorry to hear you are having such an AWFUL time.

I am just curious, have you ever been tested for celiac disease (wheat allergy to gluten?)  That can do the same thing.  You make antibodies to gluten, and anytime you eat something similar you get this horrible mess.

I tested semi-positive to this, but the biopsy came back negative.  So I may have a touch of it developing.  I get much of what you describe from eating whole wheat dinner rolls.  It takes several days for it to die down if I eat just the wrong thing.

The initial testing is a simple blood test.  You might want to check into that.  It can also cause some of the rashes you are describing.  It is along the same order as the masto mess.  But if you eat a good diet you can control it.

I will send you some info on it.

IMO, everyone with mast cell problems should be check for gluten sensitivity.  All my problems started together with gluten and casein sensitivity, microscopic colitis, and probably the mast cells at the same time.

Also, microscopic colitis causes non-bloody diarrhea too.  Don't know if you ever had a colonoscopy or endoscopy done.  I always think it's good to cover all the bases, just in case there's something else in addition to mast cells. Which is certainly my case.

Hope you feel better Patersonic.
Faith (B)
http://mastcellsandme.blogspot.com

I'm one of those people who has celiac disease along with a mast cell disorder... I had a GREAT response to the diet, but my testing was screwed up (due to some bad advice from an allergist).  Through Enterolab I also found out I have the HLA-DQ8 gene, which is one of the main genes involved in celiac disease (the other one is DQ2).  I am very, very careful with my diet... if I get even the tiniest bit of gluten I have horrible problems with constipation and abdominal pain.  I've been strictly gluten-free for over a year now... the first few months were hard, but now it's easy!  It's just a matter of finding new "favorites" (I eat a lot of rice) and keeping your own kitchen well stocked with good food so you don't feel deprived.

It is a good idea to get a "celiac panel" before you go on a gluten-free diet, but don't be discouraged if you get a "negative" result... give the diet a try for a few weeks and see how you feel.

Thanks everyone... I started on a gluten free diet as soon as the GI stuff kicked up several gears; I've been gluten free for just over a week now... I've heard that it takes a good couple of weeks to feel any benefit... curiously how long until you started noticing a difference?

I'm going to describe what happened. But firstly I thought I had chest wall pain (many people with fibromyalgia get this, connective tissue stuff) but some doctors have flexed my rib cage while I've had these pains. now if I did have true chest wall pain it would have hurt and perhaps launch me on a small flight into the stratosphere, but no pain on flexation. This illness for me is greatly affecting my neurological system. I'm fairly definite that I have intercostal neuralgia, the more I look into it the more I can relate and the chiro neurologist I see has picked this up also. Intercostal neuralgia, when severe, can mimic a heart attack and with women it apparently will affect the left side of the chest more so when an 'attack' of it occurs. It also causes pain across the stomach, spleen, liver area as it affects the diaphragm.

I've also had esophageal spasms and as some of you may know, these hurt like buggery and go through to the back. It wasn't that. And it was not reflux pain radiating. I've had that before and yes it hurts and can mimic a heart attack but this was very different.

I ate something I normally eat and have usually have NO reaction too although this time I did: Scrambled eggs with leeks in butter, asparagus and a small amount of very white goats cheese (this white goats cheese doesn't affect me) but I think it may have been the eggs, as I've had the goats cheese since and no reaction. It resulted in a mild intolerant reaction ie. stinging eyes, top of head pain, mild body aches. At this point I knew I needed to be extra mindful as prior to this reaction my body was very unstable. As I've been having reflux and GI stuff and due to this reaction I took 150mg extra of Zantac. You know I think the zantac triggered this event. I remember when I first started on 300mg zantac I got a sort of strange out of body manic buzzing episode that lasted for a couple of hours. At the time of that initial zantac dose my body was fairly stable... but I feel as my body is so crazeeee at the moment the zantac may have pushed me over the edge on top of the intolerant reaction to the food... can't be sure of course, just trying to work it out.

It was ironic, I started to get a wee bit more energy back, so on Thursday night I resumed painting I was feeling ok, I still had global GI pain, back and hip pain, mild reflux and chest pains but it was manageable, hence having a paint to try to distract myself from these symptoms. As I was working on the easel I was standing not sitting, so my body was in a position for a long time, in retrospect that may have triggered off the chest pain/nerves. The first symptom was heavy gyno pain. I ignored it, it passed. I was totally absorbed in the painting then a horrendous feeling came over me as well as severe flushing and sweating. I took off most of my clothes. Then pretty much straight away with that feeling the profound left chest pain began, like a tight fist inside my chest and it was getting more and more painful, seriously painful getting more and more tighter, it really felt like my heart. Then it was like my body couldn't hold itself up, I felt "poisoned" I was trying to not drop and make it to the epi pen. It's the first time I really thought to use it, but amongst all this I'm struggling with the BP monitor, falling off the couch. I really thought i was dying and in the midst of this was mentally preparing myself saying "if I go I don't want to go stressed, so I need to let go of my body" I managed to get a BP reading 101/63 pulse 64. So I didn't use the epi. Then it felt like my bowels and uterus where going to drop out of me, this full on downward rush of energy. Then I was clammy cold, but couldn't move to put anything on me. A strong feeling of blacking out still prevailed. I just sat there my body so so weak feeling like jelly. I didn't have the phone near me to call the ambulance. Eventually I slowly got to standing and walked out to mum + dads house to get them. Mum said I was as white as a bleached sheet. That small walk bought on another less intense bout. I was laying down now and then the flushing started again. At that point mum called the ambulance. When they got here my body was in shock I was trembling out of control (I've had that before) and couldn't open my eyes. I could barely answer their questions, in fact the exertion of speaking was too much, so they stopped asking me questions. They were so lovely and caring and could see I was in a bad way and didn't press ahead with questions I knew they needed to ask to fill in their documents.
My goodness I was soooo bloated! I looked pregnant.

I'm booked in for a colonoscopy next Friday. I've forwarded info on of proper immunohisto staining for mast cells as well as the REMA protocol.... although I'm not going to follow the whole protocol, especially the IV rantidine. I'll use 50mg prednisolone and valium. Propofol, the sedative used for these procedures, actually has mast cell stabilizing properties, but I'm not risking anything. I still have to have all this confirmed on Monday with the gastro doc as I'm pretty sure this country hospital does not have the specific stains for MCs.
For those who've had a colonoscopy how was it and did you flair at all from the procedure?

The nurses and doctors at this country hospital are just tremendous. Angels with invisible wings. The admit they know nothing about mast cell disorders but give me great care.

Now I'm still exhausted, as is expected, but I'm more coherent today as you can see from this essay! I've lots of nerve twitching and the intercostal neuralgia is still bad.
I've upped the zyrtec just 5mg and this has helped ALOT. I can drink water and it's eased the diarrhea to a degree where I don't feel like I'm going to poop my pants. Bloating has subsided. Still have GI issues but not as bad since upping the zyrtec.
Meds currently:

AM:
180mg Telfast, 300mg Zantac, 5mg Zyrtec, 25mg Zoloft

PM:
180mg Telfast (Allegra in the US), 15mg Zyrtec

Epi on hand. Occasional low dosage of valium (2.5mg-5mg)

Oh yes.... I've lost 6 kgs in one week!! Mumma mia.

I don't know what I would do without this forum. I just want to thank everyone for being so supportive and sharing your knowledge and experience. Once I get proper medical care I'm sure I'm going to get this THING under much better control and get a proper diagnosis.
I know I reveal much about my self online, which I've never done before, but I don't care currently how public this is, I need the support of all of you fantastic people in here as I know you understand how scary this can be.

Yep, I've got films handy to watch and I'm laying around like queen muck!

My goodness Pat, you sound like you've been run over by a Mack Truck, that's loaded with granite boulders, that's been driven by 10 ton elephants!  And worse yet is that they had Tank tracks for wheels and that they decided to back it over you several times just for effect!  Gracious me!

Just a question...one that shows my ignorance about your story, have you been diagnosed at all, or investigated beyond your spots?

I went through a colonoscope last year.  They did a 2 for 1 sale special on me by doing the endoscope too at the same time.   Also, I did the cleaning routine in hospital out of precaution.  I'm very sensitive, and I've triggered by the laxitives I've had to use for cleaning out the system for sonograms.  It's not the medication which triggers me, it's the effects of medications.  Some of us are that sensitive and when the laxative took effect hours after taking the medication is when I went into anaphyalxis.  My doctors have learned that they can't trust me with ANY kind of medical procedures and so they hospitalize me for EVERYTHING and I must follow the REMA protocols too.  Yet, here's one more thing they do with me, the procedures are all performed in the operating room with an anesthesiologist right by my side every second!  I've got to be sedated for EVERYTHING!!!!    You may not be so sensitive, Pat, and I hope you aren't.  However, it would be a good idea for an anesthesiologist to be in attendance because in the intestines are a lot of mast cells and the tubes get them stirred up and this is what triggers us.   I really freaked my doctors cause the exam caused me to go into the syncope.  I didn't wake up from the sedation and it took about 2 hours before I came to!  They just kept a close eye on me the whole time.

Anyway, as to the testing.... my dermatologist instructed the gastro that biopsies should be taken the entire way down the intestinal tract REGARDLESS of what she saw!!!!!   It didn't matter if my intestines looked perfect, everything was to be biopsied.   This is why, since you are investigating, it would be worth doing the esophagus as well, take advantage of the sedation, the anesthesiologist and the entire situation so that you aren't put into further danger doing a second test on another day.  It takes a bit longer, but it takes care of the whole kit and kaboodle at one time. 

The immunohistochemical testing should be done for Tryptase, CKit (CD117), CD 2, CD25, CD34 and CD45.  These are the markers that they use for the Masto Concensus.   Depending upon the outcomes of these markers is whether they will identify mastocytosis or not.   

As to the procedure itself, I did not flair with the procedure, however like I said it threw me into a prolonged syncope immediatly with the procedure, but I also kept reacting for a week afterwards and had to continue with the prenisone for a few days to cut the reacting a bit. 

Pat, those REMA protocols are tremendously effective and you don't need to feel anxious about their holding you!   They're designed to hold us with our worst enemies - contrast injection and surgery!  A colonoscope is not as huge of a triggerer as contrast or surgery.  Sure it triggers, but it's not a massive degranulator, so you can go into this exam relaxed, you should get through it all just fine. 

One thing I noticed about your meds, you're not on Ketotefin are you?   You should be!  I'm on 3 mg.   I take 1mg in the morning and 2 mg at night.  My docs are thinking of upping it by one or 2 mg to see how I do, if we can cut down on some of my reactions. 

Well, I hope they figure out what is happening with you!  You sound like you are just going through the most awful time!  Yet, the time would be a great deal more awful if you didn't have a means of talking with others about this!  I know that being able to talk over some of my issues has helped me a lot for there's only so much that the people we love, who don't live trapped in this nightmare body of ours, can take as far as our talking about what we are going through!  They reach saturation level really quick and yet our mental health is as important as our physical and unless we can talk about it, especially we women, we bottle it up and get depressed!  So, Pat, let it flow!  It's good therapy to know that you've got people who are going through the same things and understand what you're feeling and thinking!

Lisa

Hmmmm, you are on a bunch of the standard meds. Here is what I do when I start to get an attack: Normally in the morning (7 am) I take 300 mg zantac and 180 mg allegra. Around 4pm I  take 300 mg zantac and 10 mg zyrtec. Dr. Akin's theory was that he saw better response in patients by having them take either allegra in the am and zyrtec in the pm or vice versa. When I start an attack, I can take an extra medicine that is not the one I just took. For example, if it is morning and I need an extra med, I will take zyrtec since I already took the allegra. after 4 pm if I need an extra one, I will take an allegra. This generally calms down the problem. I also have singulair (one/day as needed) because they feel mast cells could be connected with leukotrines, and Singular is a med for that.

Adding just 5mg of zyrtec with morning meds has helped with the GI issues.
In retrospect I do think I had a violent response to the extra zantac I added as well as the other compounding factors outlined in the above posts.
Which got me to thinking about the IV rantidine for the REMA protocols. In lieu of everything I've cancelled the colonoscopy for this Friday. If something were to happen on the table I just don't currently have the emotional capacity to deal with it, regardless of sedation. I've got an appt with the gastroenterologist first before the procedure now and I feel better about that arrangement. Once I get better medical care I'll feel more confident undergoing such testing.
I just want to let my body settle. My whole right side of my body is ridiculously tight.
So it's all rice, rice crackers, puffed rice, chicken, rice, gluten free bread, butter, thankfully mangoes, parsley + fresh corriander and more rice.
I will be a rice paddy very soon.

I think you have made the right decisions. No testing until you get calmed down. I am glad that the zyrtec is helping! Yay!

Make that two rice paddies, you and me!!!!  At the moment, all I can eat is rice and ghee.  I was eating chicken, but I'm getting reactions to it so will take a break for a bit and see if I can have it again in a few days.  Glad you are feeling a little better.

This food story is getting old.  I don't mind a limited diet, but 1 or 2 foods is not OK.  I think one part of my food problem is coming from fructose malabsorption (fructose is in fruits and veggies), one part from histamine foods, and one part from oxalates.  At least I know....

Faith B.
http://mastcellsandme.blogspot.com