Hi Heather,

You don't have to have Celiac Disease to be gluten-intolerant.  Case in point:  My younger son tested positive for the genetic marker for CD when being screened for MS.  My older son still had  high Anti-gliadin SigA (over double the high end of normal)  7 years post GF.  He and  I both  showed marked improvement after going on a gluten-free diet, which my GI doc said is the ultimate test.  Funny thing, all 3 of us tested negative for CD per routine CD blood testing.

Bleeding tendencies seem to be inherent to connective tissue disease.  Not surprising when you think about it as veins and arteries and the whole vascular system is connective tissue.  Likewise, mast cells are part of connective tissue.  So I could see how mast cell disease could affect coagulation and/or cause excessive bleeding.

My pre-surgery bloodwork always comes out fine, aside from chronic low wbc and leukopenia.  Yet I bleed like a sieve, always have.  When having my first bone marrow done last month,  blood shot up from the puncture site like water from the blow hole of a whale. I think it freaked everyone out. <lol>  It took a while for them to stop the bleeding, and they had to revisit the issue again in recovery - no surprise to me.  Bleeding tendencies are a feature of Ehlers-Danlos Syndrome, and I have that connective tissue disease as well as some sort of masto it seems.

What type of mast cell disease do you have?

Deb Mc

Hi heather ,

I am so sorry about how poorly you are xxxxxxxxxxxxxx I was reading and you said that endometriosis was excluded with an uss . It also elusdes CT scans . Endometeriosis can only be diagnosed by a diagnostic laparoscopy . This was suspected in me , as my reason for Abdo pain , double periods , pain in my liver area and back pain . It was negative .

The mariena coil is a useful tool . there are also other treatments avilable . Some gyne promote using these to asses effect before surgery others just want to look and know for themselves . less invasive is a hysteroscopy , camera into the womb for direct assesment of the womb lining xxxxxxxxxxxxx This doesn't diagnose endometriosis in the pelvic cavity , only inside the womb xxxxxxxx

My surgery was done in a hospital not believing my mast cell status .
I per medicated myself with steriods and pririton (H1) and they agve me IV ranitidine on induction .

I came through as planned . i felt like I had misbehaved in theatre , tight chest , itchy later that day as i am after a biggie ( epi pen level ) . The anethatist didn't look me in the eye when I asked if I had behaved . So I do't know if I did degraualte .

BUT , This was in a hospital poorly prepared . Any planned surgery for you would be well planned and you suitably medicated under dr cassels guidance .

I also ahd emergency surgery on an abcess , on good friday without my main notes . I premedicated myself again . I did fine xxxxxxxxx

Below the waist procedures can be done with spinal analgesia or an epidural using the local anesthetics that are safe for us . NO nasties . This will remove the risks of general anagesia and you can be observed fully for all / any signs of problems xxxxxxxxxxxxxxxxx

I know they don't want test your hormones . BUT in not doing so they are not in possestion of important info that is easy to gain . In not doing so they may be compromising your care xxxx Its hard being strong in the face of all our doctors . But in this situation I think pushing for this is vitally important .

I am assuming you have had a smear - PAP smear . Just to be safe .

I am seeing a heamotologist / immunologist ( Pal of Dr Grattan here ) on the first of march . Ill let you know my outcome in the persuit of an answer to my bleeding , Both extra vaginal bleeds between periods and rectal bleeding in realtion to my reactions . One happening in A&E after a 2 epi pen and multiple other treatments inc IV magnesium for continuing wheezyness . I had a chest infection as my trigger . I have associated the bleeding with corn and gelatine in my meds . They are now clean and I am having less . They come in a week of a biggie either before or after xxxxxxxxxxxxxxxxxx

I manged to hold off my period related biggie last night xx I have found ranitidine a god send in histamine mopping up terms . I lost my nights sleep in self preservation mode . I have an awake period after any significant reaction , today I came on .

I have musule shakes / spasms in all muscule groups at various times . As Lisa said smooth musule cramps are a histamine effect and compliment chemical 3a 4a and 5a ( anaphlatoxins ) Continual low level oxygen stops them , whist I have it . My legs shake eevy night when i settle . My thoughts are - after scans of the area , that it is enlarged lymph nodes , in my pelvis , mopping up my leg angiodeama each night .

Hugs and many thoughts xxxxxxxxxxxx

Josie

I was diagnosed with an autoimmune mast cell disorder in January 2010.  It doesn't really matter what name you give it... MCAD, "autoimmune mastocytosis" (which I kind of like, but who am I?).  The fact is that the reason my mast cells are so trigger-happy is because they're constantly being stimulated by my own immune system.  The antibodies don't destroy the mast cells, they just set them off.  It's like I have a peanut allergy, but I'm allergic to myself.    

Since you asked for the low down on gluten, I'll give you the fifteen-minute version (then I need to go teach my next class)...

In April 2008 I figured out that my son was severely intolerant to casein, the protein in cow's milk.  I took that out of my diet and he returned to normal within a couple of weeks (yeah!).  I thought the dairy-free diet might help get rid of my abdominal pain and bloating, but no such luck.  In August 2008 I was diagnosed with Hashimoto's disease, which was actually kind of exciting because it gave me answers to a lot of questions.  I started reading about that and noticed that "gluten" kept coming up.  I went to a local allergist and... without doing any testing... she said, "Oh sure, give that a try!"  I don't think she understood how serious I was.  About two months after I stopped eating gluten I realized that I needed a celiac panel ASAP.  That was negative... it only included the most sensitive tests (EMA and tTG), which are often negative after just one or two weeks.

Six months later I finally got the allergist to give me a celiac panel, but by then it was too late.  Three months after that I had an endoscopy... of course that was fine too.  On my own I had my genes tested and I do have the DQ8 gene, which is one of the markers for celiac disease.  It doesn't mean everyone with DQ8 has it... just that the risk is there.  At this point, I don't really care what my exact problem with gluten is.  I can't eat gluten without bleeding and severe cramps.  Would you eat something that made you so sick?  NO WAY am I going back on gluten just to have someone (maybe) tell me, "You need to be on the gluten-free diet."  STUPID.

Looking back, I've had symptoms of a mast cell disorder for a long time... since I was a teenager.  BUT... it wasn't until after my son was born (my second living child) that my body went totally haywire.  The labor itself was fine.  Right after the birth I started shaking, I felt really COLD, and I almost threw up when I tried to breastfeed.  The cramps and nausea were unbelievable... it's a miracle that I was able to keep breastfeeding (I was very determined).  Pregnancy was definitely a major trigger for me.  My second one ended in a loss at 17 weeks (cause undetermined... probably autoimmune), so I was very, VERY stressed for that whole third pregnancy.  I went for an ultrasound every 2-4 weeks and had weekly counseling sessions.  It was horrible.  Imagine what THAT did to my mast cells

I did have a pap smear in October.  This pain/bleeding is seriously the last mystery symptom I have  Everything else I know how to take care of!  Isn't that awesome?  I don't want anyone to think that I'm really suffering all the time... I'm not.  Just during these attacks.

Heather

No, no, Ramona, they are two different meds!!   Close in name, but different in the way they work.  

Buscopan is Butylscopolamine  and the other  is plain scopolamine.   Take a look a them both.  You'll see what I'm saying.  

http://en.wikipedia.org/wiki/Scopolamine

The doctors here in Brazil HIGHLY recommend Buscopan for pelvic cramping of many issues and it truly is a very effective and good medication.  They use it for passing kidney stones and gallbladder stones, uterine cramping and i see now that also for bladder spasms.   It's very effective medication but why it's not okay'd in the US I don't know.  But then, do we really need to go into that subject?!  



http://en.wikipedia.org/wiki/Butylscopolamine

Butylscopolamine is used to treat pain and discomfort caused by abdominal cramps, menstrual cramps, or other spasmodic activity in the digestive system. It is also effective at preventing bladder spasms. It is not an analgesic in the normal sense, since it doesn't 'mask' or 'cover over' the pain, but rather works to prevent painful cramps and spasms from occurring in the first place. The attachment of the butyl-bromide moiety effectively prevents the movement of this drug across the blood-brain barrier, effectively minimising undesirable CNS side-effects associated with scopolamine/hyoscine.