Hi-

I'm due for a repeat colonoscopy and endoscopy too- yuck. I'm not sure what your DX is- but if you are looking for further evidence of abnormal mast cell activation, Dr. Lawrence Afrin suggests multiple biopsies throughout the GI tract. Here are his instructions:


"Although marrow is almost always "clean" in MCAS, I have enjoyed a roughly 90%
"hit rate" on finding aberrant mast cells (either increased quantities and/or
abnormal immunophenotypes and/or genotypes) on random ("blind") biopsies taken
throughout the GI tract. In my patients who want "tissue proof," or for those
patients who will be challenged by their other physicians who won't "believe"
they have MCAS until "tissue proof" is demonstrated, I don't even bother with
marrow biopsies any more and instead just send them to the gastroenterologist
for upper and lower endoscopy. I had to persuade him the first time, but the
gastroenterologist now knows to take multiple biopsies all up and down the
tract. Similarly, I had to persuade him the first time, but the pathologist now
knows to perform special staining (typically at least CD117, sometimes also
Giemsa, tryptase, toluidine blue, CD25, and/or CD2) on *all* the biopsies. The
disease has a patchy and sparse distribution, after all, and the
gastroenterologist is "blindly" taking biopsies of tissues which grossly (to his
eye, through the endoscope) appear completely normal. In fact, without the
special staining, under the microscope the tissue will almost always appear to
the pathologist, too, as either completely normal or, at most, mildly
chronically inflamed. Yet, if the biopsies are taken in a patient who not only
has a history consistent with MCAS but also has at least one elevated mast cell
mediator level, then in at about 90% of these patients you can find at least one
GI biopsy that shows abnormal mast cells -- and I would be willing to bet
another 9% or so would be found to have it if only a few more biopsies had been
taken. Once an abnormal biopsy is found, the pathologist knows to send it for
"PCR" (polymerase chain reaction) analysis for the KIT-D816V mutation that marks
for systemic mastocytosis, but that's almost always negative in MCAS, consistent
with Dr. Molderings' recent findings on the genetics of MCAS. I continue to
hope that we will gain within the near future the ability to (cheaply,
routinely, commercially) analyze for all the mutations Dr. Molderings has found."

All the best-

Julie

Dr. Lewey (my GI doc) has 400 patients with abnormal numbers of mast cells in their digestive tracts.  He has a regimen for patients to try, and he says he finds a complete reversal of symptoms in 8-12 weeks.  My experience with it has been excellent.

Pre-medicating is so important for these procedures, using the protocols for mast cell disorder patients.

Amazing!   This must be the season for colonoscopes!!  I have one scheduled for two weeks from now!!  Small world!



Dr. Afrin's instructions are RIGHT ON!   This is how we discovered that my son has mastocytosis.  He's 20 and last year was diagnosed with proctitis.  He's not under a Rheumatological investigation and his masto is showing autoimmune involvement in the RA area.  Vague RA autoimmune markers.  

Anyway, when my masto specialist heard my suspicions about my son she ordered an Upper and lower GI and the upper GI was clear but in the lower GI we found eosinophilic enterocolitis with a ton of elevated MCs.  Yet the key here was found an aggregate of MCs with over 150 MCs to the field!!  I wanted to cry thinking that my son has mastocytosis!!   However, when we discovered this we KNEW what was happening with him.  My doctor immediately put him on 2mg Ketotifen and he's already feeling relief for his masto seems to attack his connective tissues!  He's said that his joints no longer feel so loose, always cracking and popping!  yet, his ANA went from 1:320 to 1:80, which indicates IMPROVEMENT!!!   The doctors are Harvard are especially intrigued with this for they are supporting me in regards to my family situation with our aortic aneurysms and due to the research of the involvment of mediator release involved in aortic aneurysms, they are closely following my family due to this curiosity of our cases.  

As to the testing, these are the exams which must be asked for.  This information comes from the WHO diagnostic criteria information on the artlcle I have.  If anyone wants a copy of this article, please ask and I'll send it to you.

CD 117 (C-KIT)
CD 34
CD 45
CD 2
CD 25

STAIN:  GEIMSA, TOLUDINE BLUE, OR TRYPTASE   (Tryptase is considered the best of the 3 stains)

These are the bare minimum of the markers which will not only give the pathologist the ability to see the mast cells but also the lymphocytes and other cells.  This is important for the lymphocytes can also be aggregated in mastocytosis and it's an indicator of mastocytosis even though you may not see the aggregated mast cells. ( It's like the smoke signal - where there's smoke....there's fire)


As to the laxatives and all o that process.   This is what your doctors should do for any of us who have trouble with these meds.

You need to be hospitalized in order to take the meds for cleaning out your system.  I am one who will go into anaphylaxis due to the EFFECTS of medications.  I have not reacted to the medicine itself, it's when they go into effect that this will trigger me.  An enema will trigger me!  My intestines are too sensitive and in forcing them to flush themselves out, this messes with my system and triggers anaphylaxis.  This has happened more than once, so my doctors are now very careful with these procedures and hospitalize me to do them.  

So, when you do any kind of colonoscope, due to the fact that these exams will move your intestines around and that the scope will rub the interior part of the tissues and thus rub the mast cells, it creates degranulation automatically.  It's the very same thing as a UP patient rubbing their skin - it causes degranulation.   So, this is why we should premedicate always for these exams.  They should never be done in a clinic situation but always in a service which is annexed with the hospital or else in the operating room itself.

I will be doing my exam in the hospital.  The anesthesiologist I spoke with a month ago, and my gyno I will be talking with next week.  He will have to hospitalize me in the morning and do the exam in the afternoon.  He will have to keep me in the OR or put me into the ICU after the exam for these procedures always put me into syncope.  After I come out of the syncope then I will remain hospitalized until the next morning and probably be sent home to continue recuperating for these exams cause me to continue reacting for a few weeks afterwards!  I'll have to increase my meds to compensate for the extra reacting.  

Not everybody must go to the extremes we go through with me.  I am not the rule, but the exceptional patient.  However, my case shows to you the POTENTIAL of what we all can go through.  However, the majority of us do not have these problems nor reactions.  The majority of us can just premedicate and do the exams in a normal setting without an anesthesiologist being called in or even annexed to a hospital.  If you've done these exams once and all went smoothly, the this is most likely your normal and will likely remain that way.  However, when you are doing this exam for the first time, it should be taken with more precaution than necessary for there is the POTENTIAL to have trouble.  Once you've gone through it and are fine, then the chances are you will continue fine with future exams.  

Yet, if you are one who has had trouble, then you need to make sure all the possible cares are placed around you so that nobody is taken by surprise.  I'm not afraid to face this exam.  Heck, I've gotten through open heart surgery just fine and this is a picnic in comparison!  I will get through this fine too, yet we're prepared and my doctors are fully aware of the potentials and so they are doing their utmost to cover every base.  This is what is RIGHT!!!!

Hopefully, this time, we'll find those pesky mast cells, this is what we are hoping for!   Why?, because you need to find out exactly what's wrong.  The more your doctors can learn as to what is wrong, the better they can treat you and improve your situation!  I'm so much better than I used to be that it helps me find the courage and drive to continue these procedures for the more we know as to what is wrong, the better my doctors can fine tune my treatment!!  This is why we keep seeking!


I hope this helps!

Lisa

If you have GI pain, you should be taking Zantac twice a day....

The tests my GI doctor does is to see if there is an abnormal proliferation of mast cells.  If there is, he recommends the following:

H1 histamine blockers (Allegra, 180 mg., twice/day or Zyrtec 20 mg./twice/day or alternate them)

H2 histamine blockers (Zantac, 150 mg., twice/day, or20-40 mg. Pepcid, twice/day or alternate them)

Gastrocrom, 2 vials, 4 times/day, preferably 1/2 hour before meals and at bedtime

Probiotics (VSL#3 or Align daily)  [I am very pro-pro-biotics, and still take them daily!]

He also thought it was a good idea that I took:

500 mg. L-glutamine, 2-3 times/day (normalizes the intestinal mucosa)

sublingual B12 supplement

2000-2400 gdu Bromelain, with meals (3/day)

1000 mg. quercetin/day (I take 500 mg., twice/day)

Stayed on low histamine diet religiously.

In patients with mastocytic enterocolitis, he finds a complete reversal of symptoms in 8-12 weeks.

Dr. Greenberger wrote a book that you might find useful, "Four Weeks to Healthy Digestion."  Some foods that ease constipation (or cause diarrhea if you're leaning in the other direction) include sugar-free gum, maple syrup, and fruits like cherries, peaches, etc...  The gum thing seems to work for me  I'm not usually a big gum chewer, but constipation has been a problem for me lately too... and it's an easy solution.

Heather

At Joan,
Where is the best place to find a low histamine diet, I have searched, but nothing seems to be clear.
Thanks!