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Finally@45

Member Since 29 Aug 2011
Offline Last Active Sep 23 2014 08:33 AM
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Topics I've Started

Mastocytosis

30 August 2014 - 04:16 AM

Quite a few people on this thread have symptoms of mastocytosis or histamine intolerance. Please note the low histamine diet: http://www.mastocyto...iet Nov2012.pdf

Annual List Of Crazy Things People Have Said To Me Along The Way

28 August 2014 - 01:37 PM

It's my anniversary of being diagnosed with Celiac and now that I have a 2nd diagnoses for Mastocytosis--meaning I'm also on a low-histamine diet, boy am I having fun!  That's putting it lightly so I can keep my sanity.    I had to go grain free during this last year, finally found out why I don't tolerate corn. 

 

Top 10 crazy things people have said to me last year:

1. Me: I know you're saying this product is safe, but the ingredients lead me to believe I better check the manufacturer myself.

Clerk: But there is nothing here that says wheat or anything, just malto....

2. How can you possibly eat that without a bun?

3. Were you the last to use the toaster?

4. Me: Do you happen to know what's put on your rotisserie chicken?  Is it gluten free by chance?

Waiter: ...just seasoning and soy sauce...I don't think you can have that.

Me: Wow, you know soy sauce isn't gluten free.  Thanks!

Waiter: Oh I wasn't talking about the soy sauce.

5.  If you can't eat grains, how will you get your carbs? 

6.  If you can't eat grains, how will you get your fat?

7.  Me to a family member:  Well things have changed and it can be pretty hard to feed me, I don't want to make anyone to feel uncomfortable.  Why don't you let me make a couple of dishes to share?

Family: Everyone else wants REAL food.

8. Me:  Is _____ grain free?

Customer service: Yes, it's gluten free.

Me: No, I need grain free...

Customer service: Gluten free is grain free.

Me: No, gluten free is just wheat, barley, rye, and sometimes oats.  Does it have corn or a corn derivative?

Customer service: Corn isn't a grain.

9.  Family: The grandbaby is on a gluten free diet.

Me: What formula are they using?

Family:  The ______.  (A soy and dairy free line.)

10. Someone who's known me for at least 2 years: You want a doughnut?


Follow Up To T.h.: Mastocytosis

28 August 2014 - 12:58 PM

T.H. wrote on October 2013 - 08:31 PM regarding a recent diagnosis of Mast Cell Activation Disorder.  Interestingly, my symptoms are very similar.  I was recently diagnosed with mastocytosis.  All grains are my triggers.  I haven't posted in a while because I found that though I have Celiac, I knew I was reacting to more than just wheat, barley, and rye.  (I was initially fine when I first went gluten free, but then gradually had to let go of each grain, one-by-one.)  Not to mention having odd symptoms like itching (with no visible reaction), anaphylaxis, asthma, and other problems that seemed to join the list at will.

 

I'd like to give some encouragement and advice to fellow Celiacs who have mysterious symptoms beyond that of Celiac.  First, of all, realize that you can't compare yourself to others too much if the problem is mastocytosis, everyone is different.  Second, the low-histamine diet makes gluten-free look like a buffet.  Third, keep insisting on being tested if anything sounds familiar:

 

So... What are Mast Cell Diseases??? Mast cell diseases include mastocytosis, where the body produces too many mast cells, and mast cell activation syndrome (MCAS), where even the normal number of mast cells are too easily activated by a trigger to release their contents, called mediators. These mediators can cause a variety of unpredictable symptoms in both children and adults, including skin rashes, flushing, abdominal pain, bloating, nausea, vomiting, headache, bone pain and skeletal lesions, and anaphylaxis. Triggers can be heat, cold, stress (physical or emotional), perfumes or odors, medications, insect stings, and foods. These symptoms are treated with medications including antihistamines, mast cell stabilizers, and leukotriene inhibitors, while anaphylaxis is a medical emergency requiring epinephrine. Mastocytosis can affect skin and internal organs such as the bone marrow, gastrointestinal tract, liver, and spleen. Most patients with mastocytosis have cutaneous (skin) or indolent (benign) systemic forms, but aggressive disease can occur, which may require chemotherapy. A diagnosis of mastocytosis is confirmed by a bone marrow or skin biopsy. MCAS patients do not fulfill all criteria for mastocytosis but exhibit symptoms, may or may not have increased measurable mast cell mediators (commonly tryptase, histamine or its metabolites) during or shortly after an attack and do respond to the same medications that patients with mastocytosis do. - See more at: http://www.tmsforacu...h.G2Ue2aBq.dpuf