Where do I start if I think I could have a Mast Cell Disorder?

[Jennifer]

Hello all! I found this group after trying to find some research on Mast Cell Disorders. I am not sure if this is what
is going on with me or not, but I have been feeling ill since May and none of my doctors can seem to figure out
what the problem is. I am wondering if you could tell me the best place to start with all of this if I want a doctor
to look into my mast cell status. First of all, what type of doctor should I even see? What types of tests should I ask
for? Do I start with my primary care physician? An Allergist? Where does one find a Mast Cell Specialist. I am in Ohio.

A little background:
My symptoms started in May of 2011 after I was actually stressed over my 1 year old’s food allergies or sensitivities. She was having
trouble with dairy and I thought maybe gluten. Checked her for celiacs and it was negative. I began to have digestive
distress myself- thought it was related to gluten, soy, and diary. Cut all of that out and still feeling pretty bad. I have
been to all sorts of docs. I am negative for celiacs. Negative for any IG-e mediated food allergies. I did have some
inflammation which my G.I. doc thought was Chron’s- but all of the markers have been negative. Followup pill
capsule study showed inflammation was gone so now he is saying likely not Chron’s. What makes me think that
there may be something involved with my mast cells is the IBS, I do have dermatographia, frequently have
itchy skin- but no rashes, sensitive to lots of medications, and I think foods with sulphites??? Or maybe is it the histamine??
I am not sure. I am trying to differential diagnosis maybe an underlying gluten intolerance which maybe has caused issues with food sensitivities and IBS- versus a potential Mast Cell Disorder. I do have 2 functional medicine doctors (osteopaths) who are also trying to help me figure this all out.

If anyone has any opinion on what might be a good place to start I would love to hear from you!!

Thank you much, Jennifer

[kamillean]

I made my daughter an appointment with an Allergist at the University of Michigan to be evaluated for a Mast Cell Disorder. I don’t know anything about this department, but I went thru each doctor’s profile and found 2 doctors that mentioned Mastcytosis as an intrest. We don’t go there until May. My daughter has a lot of the symptoms you mention…IBS, Medication sensitivities, itching, food sensitivities. She has had some sort of food sensitivity blood tests done before and nothing showed up on it, but another doctor said she should have igG testing done. We haven’t looked into that yet.

[Jennifer]

Thanks for the response! Yes, I think I am going to start with allergist too! How old is your daughter? I had a LEAP-MRT
test for food sensitivities done by my osteopathic doctors and it did show some sensitivities that I was unaware of that were
helpful- sodium sulfite being high up there. I would have had no idea I was reacting to that had I not had that testing.
I think the ELISA is similar, but neither test is offered by any allergist I found. My osteopathic/holistic doctors also had me
also undergo a comprehensive stool analysis (CDSA) and that was just completed and did show some bacteria and DNA from an
unknown parasite. So now they want me to treat those so we’ll see what happens! I think I am going to start with the allergist
myself to ask them to run serum Tryptase and Histamine ( If I am spelling those correctly). I think those are the 2 tests that
should be run first- If anyone else has any other suggestions please let me know!

Thanks again for your response and goodluck with your appointment! Jen

[kamillean]

My daughter is 19. She has had issues with everything since she was 14. We haven’t been able to find many answers so far. I am glad you mentioned the names of some of the tests you have had. I will have to look those up. Knowing what to ask for is helpful. If you make it to an allergist before we do (May) let us know what they say. I have no idea what to expect from the appointment. We are waiting till May because she is away at college. Good luck!

[Jennifer]

I have an appointment in March with an allergist, so if I find anything out I will let you know! I would suggest finding a good functional medicine doctor (also called holistic/or osteopath) in your area if you have not done that already. Maybe they can help too… I am
seeing a combo of doctors! They all have very different ideas, but I will take any at this point! I will keep you posted!

Thanks! Jen

[Jennifer]

Hello. I just wanted to give you an update. I did go to the allergist and they ran the tryptase test and some other blood work all which was all negative. All my tests over this past 10 months have been negative. The allergist did let me trial gastrocrom though and it has made a world of a difference! I can now eat somewhat back to normal again! It has really helped me. I suspect I may have some type of mast cell activation syndrome that has not been diagnosed, but have not been able to prove that yet.

Also, interestingly enough my holistic doctor did find an underlying protozoa parasite that was treated once with antibiotics. It also needs
to be treated with herbs, but I get skin rashes with so many herbs combined that I am having a hard time following that protocol.

Anyways, now I am going to just continue to take my sodium cromolyn and hope I continue to feel better. I don’t know if I will have to
take it from now on or not at this point…. I am now realizing that I have some pretty bad sinus pressure which is the next issue I will have
to try and find relief for!

Goodluck with your daughter’s appointment!

Jen

[Dr. Diana]

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