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Mast Cell Activation Syndrome (Mcas)

g f but still sick?

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91 replies to this topic

#91 jebby

jebby

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Posted 19 March 2014 - 07:40 PM

Hi Greenbeanie,
I have been away from this thread for a long time.
In my case my tryptase level was totally normal at baseline.
If my allergist had not proceeded with further testing (including a repeat tryptase to show that it increased with symptoms and urine tests) I would never have been diagnosed with MCAS. He fortunately took this time to read all of the info that Dr. Afrin had sent to me.
Also, I have two friends who are internists that had never heard of MCAS until my post, now they are stating to see it and diagnose it in their patients since they know to look for it :)
Jess
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#92 greenbeanie

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Posted 20 March 2014 - 04:14 AM

Hi Greenbeanie,
I have been away from this thread for a long time.
In my case my tryptase level was totally normal at baseline.
If my allergist had not proceeded with further testing (including a repeat tryptase to show that it increased with symptoms and urine tests) I would never have been diagnosed with MCAS. He fortunately took this time to read all of the info that Dr. Afrin had sent to me.
Also, I have two friends who are internists that had never heard of MCAS until my post, now they are stating to see it and diagnose it in their patients since they know to look for it :)
Jess

 

Thanks so much for your response, Jess. I just got my results, and my tryptase was indeed normal. At least I now have a baseline value. I can probably convince her to run the test again next time I have acute symptoms. I am fortunate to have an allergist recently out of medical school who has heard of MCAS. Although it didn't occur to her until I asked about it, she immediately said I do fit the profile when I brought it up. Next time I'll bring a copy of Dr. Afrin's chapter with the relevant diagnostic parts highlighted! 


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Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.



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