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Regular Member

Date Joined Oct 2006
Total Posts : 221
   Posted 6/15/2007 10:15 AM (GMT -6)   
Hi everyone. 
Just wondering if any of you has ever been diagnosed with Mastocytosis?  I went to the Allergy doc, finally, and found out about this.  I was not allergic to any of the major foods or allergens like I had thought, but my body reacts violently to additives (MSG), sulfites, nitrate, etc.  These sensitivites  and the mastocytosis would explain my terrible reactions, dangerous tachycardia, etc... My local ER knows me by name.... on every shift!   tongue  LOL !!
I am so puffed up from steroid injections, that I am looking forward to getting this under control and losing some of this puffiness.
I am currently carrying an Epi-pen and a small bottle of dye-free Benadryl in my purse.  I would like to know what else to expect and what to avoid, if possible.  Since I am adding this to a list of other problems, I am wondering what in the world I am going to eat, use for shampoo, detergent, etc...  I dont want to end up living in a plastic bubble!
Mother of four, full time Systems Analyst
Sjogrens, Crohns, suspected Lupus, Pancreatitis Dec. 2005
Meds:  Medrol injections; Darvocet as needed, Neurontin 100mg

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 6/15/2007 4:54 PM (GMT -6)   
Victoria, I have never heard of mastocytosis, but I'm glad you found out about it so hopefully you can better control it. Boy, you never know what's going to come around the next corner at you. Thanks for telling us about this because it might help someone else who has been having similar symptoms. However, I'm really sorry you have to deal with it and be so careful about these additives - it makes life more complicated.

I hope you are taking good care of yourself - I imagine you still have a lot going on between your family and your job.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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Co-Moderator: Lupus and CFS Forums

Regular Member

Date Joined Oct 2006
Total Posts : 221
   Posted 6/15/2007 5:52 PM (GMT -6)   

Thanks, Hippi. Good to hear from you.  :-)   {HUG!}

Mastocytosis is a condition where the body produces way too many Mast cells... these cells are responsible for producing Histamine.  I have become extremely sensitive to food, cleansers, chemicals, additives, etc. as a result.  The doc told me it was rare, but hey, Lupus is too. I have to find a source for hormone free - antibiotic free, free range chicken and beef.  I found that our Publix sells it, but it is SO expensive!!  sad

On the homefront I have had a couple of really bad weeks physically, probably because I am trying to pull 60 hour weeks.  DH is coming home next Thursday for four days and may not return for the last three months of the program.  We will make that decision when he is here.  Apparently the first three months is focused on his recovery, and the last three on his helping others in their recovery.  I know its important that he help others, but I'm not sure how much longer I can keep this up.  I am falling apart!  God Himself is holding me together, I know for my kids.  I've told DH that we need him here more than those people do.

So, still hanging in there.  There are good\bad days, and then there are the bad\bad days.  Every once in a while I will have a day where I am almost pain free.  I am so thankful for those, they get me through.

Yes, I know I said I would be gone for a while, but theres not a day gone by that I havent checked the messages.  I couldnt do this without all of you.



Mother of four, full time Systems Analyst
Sjogrens, Crohns, suspected Lupus, Pancreatitis Dec. 2005
Meds:  Medrol injections; Darvocet as needed, Neurontin 100mg

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 6/15/2007 8:26 PM (GMT -6)   
Wow - someone else like me! I carry the epi-pen AND an actual bottle of epinephrine and syringes. I self-inject small amounts of epinephrine to stop potential allergic reactions from becoming fatal. I am diagnosed with lupus, but the biggest problem I have is being allergic to everything! The most recent addition is Celiac (gluten intolerance). I also am allergic to virtually everything that grows, any aspirin product, many foods, meds, etc. Today I saw my rheumy and, he gave me a shot of prednisone. So far, I am feeling somewhat better, but there is a long way to go!
Take care,

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 6/15/2007 8:51 PM (GMT -6)   
   (((Hugs))) I have never heard of that either. I'm glad you explained it. I'm also glad the doctors figured it out and their treating you. I hope you feel alot better soon. Hang in there and keep us updated. You are in my thoughts and prayers.
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
mirapex,advair,foxamax,donnatal,folic acid.
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Veteran Member

Date Joined Apr 2005
Total Posts : 1529
   Posted 6/16/2007 12:18 AM (GMT -6)   
Gosh, Victoria,

That is quite a lot to deal with on top of all the other you have to cope with. Did your allergist give you any good tips as to sources for products etc. Have you done searches on the web?

I wish you the best with this condition; be very careful, I'm sure you will. You really must cut back on the work hours if at all possible--I don't know how you're doing this.

I also wish your husband the very best with his recovery. I hope you and the family will reunify over the next several month successfully.

xoxo emmie

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy

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