Now what? My daughter is dealing with severe GERD and urticaria
My daughter is dealing with severe GERD and urticaria (thinking it's MCAS). I can't get a GI appt for 2 months despite being in the hospital 4 times in the past 5 weeks. The allergist wants to put her on Xoliar which will suppress her immune system. all blood work comes back normal or has no cause for alarm. Feeling frustrated and worried. NOT sure how to help her or the next steps.
Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Hives can be a precursor to hashimotos, thyroid tests?
Welcome @teacuptink. Oh you must be very worried about your daughter. Dealing with severe GERD and urticaria and possibly MCAS is a lot to handle. You'll notice that I moved your 2 posts into one discussion that now appears in the Automimmune Diseases, Digest Health and Skin Health groups. That way you only have one discussion to monitor and to connect and gather feedback from fellow members. Members like @davef @marye2 @bluecow @mnpen @sierras @rech1 @dbking may have some thoughts and strategies to share.
You may also be interested in reading the helpful posts in this discussion:
– Aquagenic urticaria: What gives you relief? https://connect.mayoclinic.org/discussion/aquagenic-urticaria/
Does your daughter live with you?
I have been diagnosed with Mast Cell Activation Syndrome.
One of the 1st signed was severe itch with water contact, Aquagenic Puritus ( no sign of hives) but is very closely linked to Aquagenic urticaria. I also am triggered by change in Temperature and barometric changes…There is a FB Group on both conditions. The FB Group on AP discovered that Beta Alanine, a common pre workout supplement KILLS THE ITCH. I have been taking for 5ish years and could not live without. I suggest you find the FB group and search Beta Alanine and see if anyone there has used it with success. Please also look on the NHI's Website and search Aquagenic Puritus, Beta Alanine is list as a option and there is a reference to a paper by two Stanford Pediatric Dermatologists.
As for Mast Cell Activation, AP or AU are very common, so are GI issues. I have attached a medical guide written by some of the Top MCAS Doctors in the world, special note to Dr L Afrin.
I have also attached a document with a link to very helpful resources for MCAS.
Last I heard, (do not know if currently true) Mayo does not treat MCAS, I do not know why, but this is a reoccurring theme in the medical world, especially since COVID has trigger MCAS in so many people. Finding a MCAS knowledgeable Doctor is a real challenge. If you do, you may have to wait 6 months or longer.
I started working with a local Immunologist, shared this guide and we worked through the appropriate testing and began treatment. Most of my symptoms were GI and Skin. I am now feeling great. Most of what I take, besides H1 and H2 Antihistamines is supplements. I found a doctor who really understands supplement and maybe also look into genetic issues, like MTFHR Mutation…
A low histamine diet is also a big help. I added low Carb in Dec 21 and it has been a game changer for me, but I also need to lose some weight, win-win.
There are also several FB Pages on Mast Cell Issues.
Could not attach this file, so I have pasted it…
Some of the Best Websites with science based, easy to understand information on Mast Cell Issues
The Mast Cell Disease Society https://tmsforacure.org/
is a non-profit organization dedicated to providing multi-faceted support to patients, families and medical professionals in our community and to leading the advancement of knowledge and research in mast cell diseases through education, advocacy and collaboration.
MAST ATTACK https://www.mastattack.org/
SCIENTIST LIVING WITH SYSTEMIC MASTOCYTOSIS. LIFE’S A BLAST.
EDUCATING PEOPLE ABOUT LIFE WITH MAST CELL DISORDERS
Supporting materials for explaining mast cell disease to non-health care professionals
Mast Cells and Autism – The Autism Community in Action (TACA)
Great Info here for anyone with Mast Cell issues. Though geared toward kids with Autism, there is a very useful and simple guide to symptoms, testing, supplements and medications at this link!
Mast Cell PSA https://mastcellpsa.com/15-things-you-need-to-know
We are not sure who the author is on this site, but the information is solid and written in a way that informs and clarifies information/misinformation. They describe themselves as “random-stranger-who-just-observes-mast-cell-patients-often “
Canadian Based: The Hoffman Centre for Integrative and Functional Medicine is a private medical centre that specializes in assessing and treating complex and treatment-resistant health concerns that have not been adequately resolved through previous attempts at resolution.
They had a few very informative pages on their website
Swiss Interest Group Histamine Intolerance (SIGHI)
Histamine Elimination Diet and Food List
NEWBIES Best Websites for Easy to Read Mast Cell Information (NEWBIES-Best-Websites-for-Easy-to-Read-Mast-Cell-Information.pdf)
OK, the files that would not load is the Guide for Doctors from Dr Afrin…this attached doc has a link as well as the other links above…I put this together for 4 FB groups I belong to, since so many people who are new to MCAS are overwhelmed…there is so much information, but these are great places to start, especially the Guide…It doesn't have to be for a gastroenterologist…my Immunologist Loved it!!.
NEWBIES Resources-Easy to Read Mast Cell Information (NEWBIES-Resources-Easy-to-Read-Mast-Cell-Information.pdf)
This has been beyond helpful. You have given me a lot to absorb so I will deconstruct it all and start my research. I can not thank you enough for all this great, useful, and helpful information. Sadly, she had a tryptase test but it came back negative well within normal range. However, she was given the test in the ER after they gave her 50 mg of Benadryl. I think she needs to be retested for more accuracy.
Again, I truly appreciate the abundance of information. We are new to this condition and it's a lot to process.
Wishing you continued success with your treatments!