Hi Colleen,

I am so sorry to hear that your entire family has these medical mysteries going on!! I wish I had suggestions. About the only thing I can think of is that it might be a good idea for you and your husband to try the histamine blocker (one at a time for a couple days each. Then add a different one.). For the kids, that one is tricky. It would be great if they could try one, but that you should talk to the pediatrician about because you have to be careful about dosage. My kids are very underweight, so I always have to get dosage advice from the doc or pharmacist to make sure they get the right dose based on their weight rather than their age.

I think you absolutely need a new doctor for yourself and your husband. Your doc has run his course and he is not taking you seriously. You can contact a mast cell specialist, but you will still need a local doctor. Search around for an internal medicine doctor. They have more interest in being an investigator from what I have seen. It really seems you are wasting time with your current doctor.

Thanks much.

Didn't know about the connection between masto and autism. Do you have any literature suggestions? I have access to subscription databases so can get pretty much any journal articles...

Very interesting.

I think I just have to go tell my GP how I feel. I think he'll hear me. I don't think there is a problem with him, but we have brought many issues to him over the years and he is a generalist.

How would I find an internal medical specialist in Canada to be my main doctor?

Thanks again.

Lisa I looked up Theo and wow, didn't know about that reseaerch. I found his contacts and asked him if there's anything he can share when we go in to see our Autism specialist who I'm sure will be familiar with his work.

I heard back from Dr. Castells so sounds like she will be talking with us by phone in a few weeks.

On the Canadian forum I saw the name of an immunologist who has worked with my son in the past so I contacted him also. And another Canadian doctor nearby who was also recommended. So hopefully we'll get some helpful support.

Not sure what the appropriate dosing of the Allegra and Zantac should be - I do feel improvements but now have a headache so sort of replaced one thing with another... guess I should wait for professional guidance on this one.

Thanks very much. If it comes to not finding appropriate help in Canada I'd be willing to go to the states - always have told my GP that but he's always encouraged us to stay. I did see that the Canadian board really encourages us to stay here - but honestly my kid's are not going to be the leverage to make improvements to our system.

Thanks again.

Hi Colleen,

  Welcome to the Forum!  Oh my, you have a full dance card!  It does sound as though everyone might improve if correctly diagnosed and medicated.

  I agree with what's been said so far but wanted to add a few thoughts.  First of all, have you read about the low histamine diet?  Some foods contain high levels of histamine and others trigger direct histamine release from mast cells.  This can affect the entire body, not just the digestive system.  You might want to take a look at it:

www.urticaria.thunderworksinc.com/pages/lowhistamine.htm

  Many of us have found improvement sticking strictly to this diet.  One of the worst problems is leftover meat and both fresh and leftover fish.  These can produce large quantities of histamine even overnight.  Leftovers are safe if they are portioned and frozen within a couple of hours of cooking.

  Interstitial cystitis is not uncommon among mast cell disorder sufferers, and I wonder if that's been ruled out for your daughter.  Mast cells can affect nerves, too.  Some people find a 1st generation H1 antihistamine, hydroxyzine, helpful with bladder problems.  Of course, check with her doc about whether she can tolerate this and whether it's worth trying.  It's not known as a dangerous medicine, but it can cause sleepiness as well as occasional reactions in people who are sensitive to it.

  Has she been checked for PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections)?  That's been linked to enuresis and some behavioral symptoms.  That may not even be a possibility, because I don't know her whole symptomology, but I've heard of this from a friend who is a psychiatrist.

  As you've found out, you're in "rare" territory now, and some rare possible diagnoses need to be tested and ruled in or out.

  As for the abdominal pain and encopresis, it's possible that could be related to a mast cell issue or an infection.  Problems in the gi tract can be caused by parasites or bacteria or lack of good flora or an unknown factor that causes an increase in the number of mast cells or too much mast cell activity there.  You might ask your doctor about probiotics for children and to have her tested, if she hasn't been, for mastocytic enterocolitis.  (BTW, I had horrible abdominal pain and gi dysfunction for much of my childhood that I now think was related to mast cells.  I had similar problems before I was diagnosed and treated for a parasite a year ago.  "Holding it" can be difficult for an adult with these problems, and much more so for a child.  Sudden urgency can occur from a general mast cell degranulation, too.

  As with some other gi difficulties, mal-absorption can become a real problem for those with mast cell disorders.  Testing for vitamin levels and/or supplementing them can help.  B12 deficiency can cause tingling/neuropathy and vitamin D deficiency can contribute to osteoporosis, as you may already know.  Magnesium deficiency can cause muscle cramping and pain.

  In addition to the H1 and H2 antihistamines, I find that Tylenol helps me with mast cell pain, I think because it inhibits prostaglandins.  Singulair can be helpful for some people (at higher doses than for asthma), and cromolyn sodium or ketotifen (readily available in Canada) are mast cell stabilizers.  A very good allergist or immunologist might be able to help your family with trials of some of those meds.

  Dr. Castells has been very good about consulting with local doctors and guiding them through testing and treatment options.  So glad you'll be able to talk with her!

  Well, sorry I "talked" your arm off!  Do let us know how you are doing!  Everyone on this forum really cares and wants to help in any way possible.

Oh, Colleen, how wonderful that you've spoken with both Dr. Theo and Dr. Castells!!  THIS IS WONDERFUL!!!!!!!!!


I think that you are moving in the right direction now!!!  

Collen, I was in no way doing any kind of bashing of the Canada site.  I used to be a member there myself and got a great deal of help from them.  I just don't agree with trying to coerce patients to remain within their countries especially if the country does not have the level of authorities that such a rare disease requires.  Canada has no authorities in masto and this is well known.  There is a very big difference between doctors who know the MC and those who know masto.   I live in Brazil and we don't have high authorities here.  I have insisted that our doctors are indeed as capable as any other doctors in the world to help me find answers, but there comes a point where you reach the end of the line!   Brazil is a leader in cardiovascular surgery and when I stayed here to do my aortic aneurysms surgery I was in the hands of the world's best surgeons, but they had to speak with Dr. Castells to medicate me!  We just do not have authorities in masto and this is where I run into trouble!!!  Some of us just do not have any choices and having a rare disease means you must leave your country and seek help outside of its borders when within the borders there are no recognized authorities.   I only wish that the Canada site would recognize this for they are doing exactly what you have said, forcing patients to be the "leverage" to bring about improvements within the medical community.   Unfortunately, this will not work that way, for if you don't have doctors who are INTERESTED, then no matter what, the system will not improve!!  

The appropriate means of bringing about these changes is through Doctor Education - conferences and congresses upon mastocytosis education!!  The patients are not to be sacrificed for this purpose.


So, GOOD FOR YOU, Colleen!!   You've got your head on straight and your priorities as well!!!  

Lisa