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Member Since 05 Jul 2010
Offline Last Active May 21 2015 08:00 PM

Posts I've Made

In Topic: Ongoing Symptoms, Not Due To Gluten - Please Help Me Help My Doctor Troublesh...

21 December 2014 - 06:26 PM

Your symptoms sound a lot like mast cell activation syndrome, which is my celiac "tag along" diagnosis which led me to continue to be quite ill after feeling better on the gluten-free diet.


If you've ever had to submit a 24 hour urine collection for methylhistamine and urinary prostaglandins, which had to be kept chilled, then you've been tested for it. If you haven't, then chances are that your doctor(s) have not thought about it. Please take the time to read about it and advocate for testing.


Good luck!

In Topic: Mast Cell Activation Syndrome (Mcas)

07 August 2014 - 05:11 PM



It will get better, I promise! I remember hitting a point about 2 years ago when I seriously wished that I would never have to eat anything again because I felt like I was getting sick from everything. Your kids will be okay. None of my kids seem to even remember that I was in such a bad place a few years ago.

As for bread, have you ever come across socca bread?


In Topic: Help From Experts - Here Is My Story

24 July 2014 - 06:58 PM

I am in Green Bay and it's a sad state of affairs up here, Celiac-Wise.

I agree that you should head to U Chicago or Mayo, if you possiby can.

In Topic: Help From Experts - Here Is My Story

24 July 2014 - 06:51 PM

Hi Bekkaz,

I am in the 1-2% of celiacs who are DQ2/DQ8 negative and so is my mom. We are DQ7/DQ7. We are Sicilian.

My TTG IgA and Endomysial IgA were very, very high before I was diagnosed though.

There was a poster at the International Celiac Disease Synposium in Sept 2013 showing that 9% of Brazilian celiacs are DQ2/DQ8 negative, just some food for thought.

Were you gluten free when your celiac antibody panels and endoscopies were done? 


In Topic: When To Give Up On Symptoms Improving On The gluten-free Diet?

20 July 2014 - 06:11 PM

Hi nvsmom,

I haven't been on here much, but I was in a similar situation to you about 2 years ago with lingering symptoms and they ended up being due to mast cell activation syndrome. I actually wrote a similar post looking for help. Like you I have both celiac and thyroid disease.

I haven't had a chance to look through all the replies on my thread, but it looks like Irish Heart and Gotta Ski have shared some info about MCAS and histamine too...

Since starting on treatment for MCAS almost all of my lingering symptoms, that I had initially attributed to celiac disease, have disappeared.


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