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Mother of Jibril

Member Since 04 Oct 2008
Offline Last Active Aug 19 2010 06:25 PM
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Posts I've Made

In Topic: Mast Cell Activation Disorder

29 November 2009 - 06:47 AM

Hi Gypsy,

Yes, I've run into quite a few people on the SM/MCAD/IA boards who are either sensitive to gluten or have celiac disease. And YES... the triggers are cumulative! My last attack (which left me vomiting uncontrollably for four hours) happened after a meal of gluten-free macaroni and cheese, bananas, and a bottle of pomegranate juice followed by a huge cup of hot chocolate... yikes! The histamine and heat were too much for my system... and this happened even while taking my normal doses of Zyrtec, Claritin, and Zantac. Thankfully, I haven't been to the ER since April, but I am using a lot of liquid Benadryl... I'm going to give Gastrocrom a try within the next couple of weeks.

I'm one of those people who has really normal tests... normal baseline tryptase, normal urinary histamine, normal complement levels, normal CBC... which has left a lot of doctors scratching their heads. It took six months for one of them to figure out that my immune system is making antibodies to my own mast cells. I wasn't going to give up without an explanation for the anaphylaxis! It's not like you can "fake" or exaggerate that kind of symptom. I'm sorry to hear that you've been to the ER so many times. Have you thought about going somewhere like the Mayo Clinic or Brigham and Women's hospital in Boston?

As to the genetic link... gluten sensitivity has a strong genetic link. Both of my kids are sensitive, although not to the same degree that I am. I have them on a "gluten light" diet. True systemic mastocytosis (too many mast cells) is not genetically linked, but other mast cell disorders can be. One of the most common is chronic urticaria, which is autoimmune about 50% of the time.

This is a good forum if you're looking for one: http://mastcelldisorders.lefora.com/

In Topic: Mast Cell Activation Disorder

28 November 2009 - 11:11 AM

I know how frustrating it can be to float in diagnostic limbo....kudos to you for your perseverance!

Thanks JoAnn :) I remember you too! Although it stinks to have another autoimmune disorder (as you know all too well)... especially one that affects so many different systems in the body... it's very nice to have it identified and be able to treat the symptoms. No more feeling like I'm crazy! :lol:

In Topic: Hla Typing

09 August 2009 - 02:15 PM

I did use Enterolab, which seems to be the cheapest. It takes about a month from the time you order the test until you get the results. The downside is that they only type the beta parts of your genes... sometimes it's helpful to know the alpha parts too.

In Topic: Hla Typing

09 August 2009 - 12:20 PM

Although the blood test is a great place to start, a genetic test (for HLA-DQ) can be very useful when you still have questions. Typically, the two genes that are most strongly associated with celiac disease are DQ2 and DQ8. It doesn't mean you HAVE celiac disease if you have one of those genes... just that your risk is higher. To answer your question about NCGS... the authors of "Dangerous Grains" argue that the only HLA-DQ types that are NOT gluten-sensitive are the DQ4s. The DQ1 subtypes (DQ5 and DQ6) are associated with neurological problems... ataxia, neuropathy, MS, headaches, etc... and the DQ3 subtypes (DQ7, DQ8, DQ9) are associated with type I diabetes and the immune complex disorders (lupus, RA, Sjogren's, etc...). Someone with DQ9, for example, could have a lot of gluten-related health problems and never get a positive result on a blood test. Same thing if you're IgA deficient. In certain situations, the genetic test can be very helpful.

If your niece does get the test, have her post the results on here!

In Topic: Special Dinner Plans For Preschool Celiac Grand Daughters

06 August 2009 - 10:23 PM

What kind of special treat are you thinking of? There are a few limits in the gluten-free world (no croissants, no licorice...), but there are lots of possibilities for baked goods. Pamela's makes a chocolate cake mix that you would NOT guess was gluten-free :P My four-year-old daughter loves to help me stir up a cake and decorate it with frosting :) I make my own frosting with butter, powdered sugar, and a little bit of soy milk or juice.