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New contruction (Read 22836 times)
BlueSkies
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Re: New contruction
Reply #15 - 12/04/12 at 09:28:30
 
Hi Marcia,

I'm on an 'avoidance' diet - in that I avoid whatever foods triggers me.  Most foods do.   The ones that don't, do the next day.   My husband calls it "the allergy of the day".  I need to go back on a 4 day rotation diet, but I've been too brain challenged and exhausted to re-figure one out to fit me, yet.   This is not total neglect, just having to decide each day which 'fire' is the most urgent that day.   Smiley  
 
The Paleo and Wahls diets are new to me.   Thanks for sharing what you have found that works.   I need to tackle the histamine list, and some of the other no-no's I'm learning about.    

What I do some days is just skip food for as long as possible!   In case anyone is wondering - this is not the best idea!   Hunger is another trigger for me.  Duh!   (But, it does work great for a few hours, which is why it's so tempting to do.)

So, I think I need to move these food issues higher up my priority ladder!  

Well, come to think of it, reading up on food issues and suggestions on this forum is a step in that direction!

OK, I just found the Wahls homepage - this looks very interesting, and goes along with some other things I have been learning recently about eating more nutrient  dense foods.  

I just realized why I haven't set up a 4 day rotation for myself again - I keep thinking "I will do this after I learn about x, y, z...
I need to just set it up with what I can already tolerate, and then modify it as I learn more.   Instead of the other way around.

Sorry about all the wordiness - I ramble more when I'm starting to crash...
I think I better go eat, LOL.

BlueSkies




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Doozlygirl
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Re: New contruction
Reply #16 - 12/04/12 at 11:31:41
 
After rereading my post from last night, I see I was on a rant, and regret posting it that way.  I am on nuritional focussed pathway now, where instead of figuring out what individual things I react to , so  I can avoid them all, I found some ways to connect the dots back to my messed up biochemistry.  

After I found a sweet spot with my meds and lifestyle for 3 weeks, I crashed, and crashed hard.  This got me to look at my overall load.  Since I avoid many if not the same things as you do Pam, I didn't know where to go.  Until I stopped my meds, cold turkey one evening and I was able to awaken the next day, first time in 3 weeks.  I've had an allergist in my past recommend stopping all meds in a medication vacation and add them in one day at a time.  I don't adivse this for any of you, but when I did it, it immediately lightened my load.  

I believe our load is filled with it all, histamine foods, meds, smells, synthetic chemicals, salicylates, tyramine, etc.  Then it dawned on me.  I have to focus on finding out how to better process them verses just eliminating them.  

What I am going to say is contra conventional medical wisdom, but coming from a healing perpective taken from natural and holistic healing fields.  There is stong belief that the vast majority of illness stems from leaky gut, altered digestion and body ecology, poor nutrition, altered pH, blocked elimination channels, methylation issues, inflammation, malabsorption, toxic overload, imbalanced hormones, clogged basic functioning, loss of homeostasis, and the body's inablity to run.  It's all very complicated, but there are fantastic sources out there that have figured out how to untangle all this.  

I personally have tried scores of conventional and natural approaches to address that long list, but never could grab that one string to pull it tight.  Growing numbers of us in chronic health forums are tuned into the body chemistry side of this and finding that we react to so many things, because we have too much inflammation, our t celll and b cell systmes in the immjune system are inbalanced, and we can't get our body the raw materials it needs to do its job or get rid of the waste properly.  

Every medication has unattended consequences.  That's why those on H1s are so dry, H2s alter the body's GI system by changing pH, which then alters the immune system, by promoting leaky gut, food allergies, malabsorption, and other GI related functions.  Antibiotics will change the body's ecology, upset the ratio of good and bad bacteria and lead to yeast and other overgrowth.  Statins cause a depletion in coQ10, a factor necessary to use energy in the cells, this is why so many get muscle loss and pain.

Lastly, those of us who have various genetic predisopostion (mutations in various genes), this can explain or at least point to why each of can't tolerate certain things.  

The cenventional mast cell world is focussed on taking more meds and eliminating more triggers to reach stability.  I have been looking outside of this approach for ways to be able to tolerate more.  I did this years ago, when I was allergic to over 25 foods then a muktifactorial treatment approach, months later, months later i was allrgic to only a small handful.  I had to address my gut issues, supplement with appropriate doses of the correct forms of various basic buidling blocks, and elimimate exposures until my immune b cells were balanced with my t cells.  I had to expand my diet to brand new foods to maintain my expanding needs dietary needs.  

This is so hard to do when the conventional approach to treating mast cell disorders is so limiting in getting us the basic building blocks and the raw materials we need to properly function.  Unfortunately, it is NOT about just taking a handful of vitamins.  The path I am now following is about finding out where your biochemistry is broken then fixing at at the molecular level.  This will clear those broken detoxification pathways, get rid of toxins, support the mitochondria to make more energy, balance the immune and neurological systems, support every organ and pull those essential strings of our tangled ball of metabolic fubar.  

Instead of asking yourself what do you need to cut out, ask yourself what do you need to add or change? In a few mintues, I'll post a who different approach to fixing broken biochemistry.  Let me know if you see yourself in this scenario.  

Lyn            
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Doozlygirl
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Re: New contruction
Reply #17 - 12/04/12 at 11:43:26
 
I'm not advocating one specific protocol, but there are numerous approaches to reversing illnesses out there.  Dr Amy Yasko's protocol reverses Autism and other disorders.  Dr Rich Van Konynenberg's approach reverses CFS/ME/FMS.  Dr Terry Wahl's protocol reversed her own wheelchair dependent MS.  Other protocols reverse cancer, Lupus, and a host of other illnesses.  

Dr Kendal Stewart has taken thses same principles and developed a protocol to address neuro and immune disorders, which has helped kids with autism and is gaining ground in other disorders.  I am sending the link to the first of five 15 minute clips of a talk he gave in Charlotte last year to an autism minded audience.  But his talk covers neuroimmune recovery steps as well.  There is no magic bullet to all this, but with the proper steps many are recovering from their messed up metabolism.  Why couldn't this work for us?   Well it has helped those with MCAS.  I had a chance to attend a wellness conference where Dr Kendal Stewart spoke on this topic and even speak with him afterwords.  He immediately pointed out inflammation as our biggest enemy, then said we have to mork on methylation.  This is explained in the clips.      


http://www.youtube.com/watch?v=J5m2jfiSnN4&feature=related

Check it out and let me know if any of this rings true with you.  

Lyn
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Re: New contruction
Reply #18 - 12/04/12 at 12:05:09
 
hummm and hummm and more hummm

in all my reading...studying and goodness knows I am not the smartest cookie in the jar but I have never seen anything that suggest that something can reverse masto...have I missed a step some where..not trying to make a fuss but if it is somewhere please let me know...
lots of doctors have different opinions etc...and I am glad that there is help for some people but I have found the best way FOR ME...is to find a doctor who knows masto and educate myself as much as possible..

redbird
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Re: New contruction
Reply #19 - 12/04/12 at 13:01:47
 
I'm not saying this is for everyone, but if you consider some of us may not be able to breakdown and properly metabilize histamine, this could be a missing link for some.  COMT is a gene responsible in part for histamine metabolism.  I recently learned I have a genetic mutation in my COMT gene that can be overridden with specific nutrients to clear the blocked pathway and reopen it.  THIS IS HUGE!!   We know histamine peaks between 2-4 am in the body, so many hours after eating our last meal.  What is happening here?  As my body breaks it down something is awry, so the first place to look is histamine metabolism.  And what about the other stuff we may not be able to break down?  

DAO is the enzyme responsible for 1 of two pathways in the metabolism of histamine.  Too much histamine is one explanation why some of us can't tolerate histamine foods.  If you lower the threshold, then symptoms subside.  In Europe, doctors are using DAO supplementation to help break down histamine.  This in itself allows some to have better histamine tolerance.  

And the foods that contain histamine also contain great benefit to the body with their other nutrients.  

As I said others may not need to look outside of conventional mast cell treatments, but some of us may be looking for additional ways to connect our dots.  

I see a mast cell specialist on the TMS Advisory board, one who encourages me to keep filling in my missing dots.  I'm educating myself as much as possible which is what lead me to the possibility of fixing broken body chemistry as a pathway to wellness.

My conventional docs don't know about autonomic neuropathy or MCAS, as I've had to be my own advocate and do my own resarch, then present the likely possibilities, which lead to these diagnoses.  Since none of my current docs are well versed in epigenetics and nutrigenomics, I am just loooking out of the conventional MCAS box to educate myself, since I maxed out the MCAS stuff.  I am finding great promise and actual cases of reversing known neuro and immune disorders through epigenetics and nutrigenomics.  I am so convinced what I am finding, I am paying it forward and sharing what I am finding in case others are looking to do the same.    

Lyn
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Joan
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Re: New contruction
Reply #20 - 12/04/12 at 18:22:25
 
Is there anything to do to fix the Kit D816V defect?
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« Last Edit: 12/05/12 at 10:42:07 by Joan »  


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Re: New contruction
Reply #21 - 12/04/12 at 19:26:29
 
Joan, haven't found that one yet in my reading, but I have learned I have a significantly higher chance of a MPN , myleoproliferative disorder, which is where mastocytosis is classified in the conventional medical world.

There is lots of similar chattter in the EDS, MS, autism, CFS, FMS, cancer world regarding protocols to override genetic mutations with nutrition/supplementation.  

Will keep an eye out for mention of the 816v cKIT mutation.  

Lyn
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Re: New contruction
Reply #22 - 12/05/12 at 03:32:17
 
Lyn,
I believe that something in my body got "switched" off.  I may have had symptoms for years but one day I woke up having anaphylaxis and it hasn't stopped.  It is just being contolled.  It is exhausing living life knowing that if I inhale or injest the wrong thing I will be dealing with it.
I know our bodies were created to work and when something stops working other things stop working.  I am very interested in your discoveries, however can not stop my meds due to my anaphylaxis.  But I am interested in adding things to minimize them and maybe one day eleminate them!  Just like the epson salt baths, that is doing a physical job that my body stopped doing.  It does need help!
I really want to understand more about why our bodies stop processing histamines and what to do about it rather than fighting the histamines it does make more sense to help the body process them!
Loved the videos and it all makes so much sense.  It was useful as well because my oldest has Aspergers and fit much of what he was saying.
I fit in several catagories too... low vitamin D  I even have high MCV like the lady in the last video(case #2) None of my doctors wanted to address it just told me about it-so helpful. Undecided  I know that I have tons of inflamation.  Embarrassed

I would start today on the vitamin suppliment.  Can you purchase these or they only prescription?
Thanks!
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« Last Edit: 12/05/12 at 05:09:54 by PamH »  

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Re: New contruction
Reply #23 - 12/05/12 at 05:12:17
 
I found them:
http://www.neurobiologix.com/health-supplements-s/34.htm


Lyn, have you started or tried any of these supplements yet?
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Re: New contruction
Reply #24 - 12/05/12 at 05:44:58
 
Lyn,

  The issue with the gene mutation is that the mast cells are not dying as quickly as they should.  They hang around so long that SM patients have way too many of them, and they don't function correctly either.  Normally, there are cells in the body to search and destroy abnormal cells, but they aren't recognizing these mutated, abnormal cells.  I haven't read enough to know which cells' job it is to kill abnormal cells, but they're not recognizing abnormal mast cells and taking them out.  And, mast cells usually have a lifespan that ends with apoptosis, programmed cell death, and that's not happening at the correct time that normal cells kill themselves.

  I guess if we could figure this out, we might be able to cure cancer!
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Re: New contruction
Reply #25 - 12/05/12 at 10:03:53
 
Is it possible that our bodies just over produce mast cells, etc to the extent that our bodies can't clear them ?

I'm asking because my body really over produces leukocytes when I have urinary tract infections. Twice now when passing stones, I've heard that I had a bad infection. The thing is that within a few hours after I've passed it my body calms down and I feel fine again.  Does that mean that these have cleared ?

And I over produce antibodies to gluten. I get high readings from cheating with a few bites of a "gf" treat.

I also have high antibodies to at least 3 viruses. I even over produce insulin.

I never understood what it meant but I was told that my immune system is up regulated.  Does having over active mast cells fit in
here too ? No wonder I'm so tired .. Lol ..

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« Last Edit: 12/05/12 at 14:23:34 by MarciaB »  

CFS,FM,Celiac,Ataxia,Dysautonomia,Paget's,Seizures,PelvicPain,Hyperinsulinemia ...Responding to Wahls diet, supps and MC meds.. kow ...    
 
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Re: New contruction
Reply #26 - 12/06/12 at 04:35:10
 
Much of this makes sense !
I am having a "brain foggy" day, but I was able to process the majority/gist of it  Cheesy. Last nite, I saw a show on PBS. It was a woman named JJ Virgin, who had written a book called The Virgin Diet. She is a "health & fitness expert". Her basic plan is eliminating 7 things from our diet to reset our bodies. I can't remember all 7 (go figure Roll Eyes), but the rest are sugar, dairy, eggs, corn, peanuts, gluten & ?. Anyway it made sense when she explained how these foods lead to leaky gut/inflammation/brain fog/etc.etc. I eat many of these things every day  Sad !  I am good about taking my meds every day, but watching what I eat is another story... One of her strategies is not to think of it as "depriving yourself", but as how you are informing, or reprogramming your body.
I have decided to try it as best as I can. It's so much easier to eat unhealthy foods than healthy ones. They take more time & energy- but maybe I'll have more in a few weeks ?! Huh
lori
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Re: New contruction
Reply #27 - 12/06/12 at 04:54:19
 
I checked it out;
Soy was #1 on the list of the seven foods to avoid. You can google the info. that explains how/why these foods are so bad for us. But most are self explanatory. I am going grocery shopping now so I don't starve. Grin
lori
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Re: New contruction
Reply #28 - 12/06/12 at 10:13:51
 
Lori,
Eggs   D:  I thought eggs were good for you??  I usually have them once a day.  Really truely I'm running out of things to eat here!  I get the others things like sugar and soy, and I know dairy is not the best but eggs...I'm going to go sulk! Cry
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Re: New contruction
Reply #29 - 12/06/12 at 14:02:02
 
It's all very individual.  There is no one-size-fits-all diet.  If there were a diet that would make everyone healthy, we would already know about it and doctors would prescribe it!  

So sad, as it would be a lot easier than each person trying to figure out what they can tolerate.  If someone says everybody can reset their  immune systems by diet alone, run the other way.  It's just another attempt to part you with your $$$.  It might help some people who are sensitive to only those things they eliminate, but it's certainly not a cure-all.

If I stay pretty much on the low histamine diet, take my daily meds on schedule, take supplements that help GI problems (probiotics, l-glutamine, and turmeric), my digestion is relatively normal.  Stress can throw everything out the window, though.

I get a lot of information reading about nutrition and supplements, but medical journal articles and other published research are the mainstays of reliable information about digestion and MC disorders.  "Leaky gut" is a disorder of the mucosal lining in the stomach and GI tract.  Medical research has shown benefits and GI healing from probiotics and l-glutamine.  Some articles name the exact probiotic strains that can help these problems.  

Pam, if eggs don't bother you, there's no reason to eliminate them.  If you're not sure, don't eat them for a week to 10 days and then eat them a few times in one day.  You'll know within a short amount of time whether they're okay or not.
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