WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Wednesday, June 18, 2014

Mast, Mito, EDS, Autism and POTS

These are becoming quite entwined for many patients.


How in the world do you sort out all the symptoms? EDS and MAST? Mito and Autism? Mast and Mito? Or for Some EDS,POTs, Mito and Mast?

If you can take meds that gets easier.

Many MCAS patients respond very well to a combination(has to be a combo for most) of over the counter meds. There are also a lot of prescribed medicines that patients respond very well to as well. They can improve the quality of life remarkably.


You can keep a journal. Each day list your symptoms. Where you have been. What you ate. Who you visited.
Removing "triggers" from your home and diet can be incredibly helpful for many. For Abby us charting her symptoms daily lead us to more easily hunting down foods and other things in her environment etc that were triggering her. Eliminating triggers for Abby is what has provided her with this period of fair stability. Since we still have not figured out why she tolerates zero meds or vitamins, removing triggers has been critical for her. Avoidance of triggers is recommended for all mast patients.


Support Groups- On the various Mast support groups on facebook, EDS support groups and autism support groups you are going to find patients with incredible amounts of knowledge on any given connected disorder.


Finding a Mast Specialist- If you suspect you have MCAS(Mast Cell Activation Syndrome) it is a MUST to find a Mast Specialist that has an interest and good knowledge base in MCAS. There are lots of Mast Specialist who understand Mastocytosis but that doesn't mean they "get" MCAS.


I still am not sure how all these disorders seem to keep crossing over, many of us agree that there is clearly a connection.


Is the mast cells? The collagen? The Mitochondria? Methylation? What caused the issues with all of those? Could it all have the same root cause? Why is becoming so common to have not just 1 but a couple?


Things get more complex when you need a specialist who understands ALL or at least most. A few of the Mito Specialists are learning about MCAS and are becoming better at spotting potential symptoms and making the right referrals. This has thrilled me to no end.

Most MCAS focused Specialists seem to "get" that many of their patients have multiple diagnoses.

I am not as familiar with the EDS community, but so far my impression is that they are an amazing patient population that go out of their way to help other patients. They made the connection between Mast and EDS first.

Autism families rock, plain and simple these families work incredibly hard to gather and share critical information for better care for all Autism families. I have found my friendships with these families to be priceless. These folks are hardcore Thinkers and always willing to brainstorm for solutions.


You need to read. There are more and more websites and blogs popping up over the net with easy to understand basics on MCAS. There are the Mastocytosis societies both in Canada and here in the US that are priceless resources of information.


We don't think the Mast is a primary for Abby, but we know her reactions impact her quality of life more then anything else. MCAS is not curable, but is very treatable for most.


Have patience, just like with Mito, the Mast community is learning and growing. Specialists have different opinions depending the newest research(which is popping up daily) Do your research and try to find one that you suspect will be a good match for you. I find speaking with other patients has been the number 1 way to find the best fit.

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