Hi All,

I'm new here and could really use your opinion.  Real quick, I started my own mc protocal 6 weeks ago and seem to have responded. My orthostatic intolerance has lessened and my energy is up. I'll spare you all the details ... But I've been on a restricted diet for 7 years now so I know most of my triggers.

I've been having episodes of swelling in my throat accompanied by throat pain for at least a year. I figured out some of my triggers and that Benadryl always stops this. I use dye free liqiud or children's chewables because they seem to work better for me.

This happened yesterday
probably in response to a new bbq sauce I tried. I'm allergic to yeast so I'm
assuming it was the vinegar.

I had mild tongue swelling last night too.  That was new to me. It was in the back of my mouth and painful.

I'm going to contact my doctor tomorrow to see what she thinks.
But I was just wondering if I really
need to get an epi pen, etc. since it's been controllable with Benadryl. And I can still breath. It's just strained and my throat and tongue hurt.

The reason I'm not sure what to do is that my DD has been going thru this for the last 8 years and we figured out that she rarely actually needed an epi pen if she took Benadryl soon enough.   She really couldn't breath if we let it go tho.

 We called her allergist
repeatedly when this all started and used the epi pen, etc.  Finally I was
told that if you call a doctor's office complaining of anaphylaxis they have to recommend the epi plus ER to avoid liabilty.   The same thing applies if you call and say you're having heart attack symptoms.

So I took it to mean that my DD and I needed to use our own discretion
based on her reaction. That's when we stopped calling and using the epi pen everytime and stuck with Benadryl. I can't remeber if we used anything else.

This approach certainly reduced our stress too.  

She's 24 now and feeling great now that she's learned to avoid her trigger foods. But I'm 57 with cfs, celiac, pots, seizures, etc etc etc so maybe I need to be more careful.

I was wondering what you all do. Thanks, Marcia.

It depends on how fast anaphylaxis is progressing.  At the first sign of anaphylaxis, sufficient antihistamines should be taken, if swallowing is still possible, regardless of whether epi will be used.  Some people take prednisone at the same time, but it won't begin working for a few hours.

My doctor told me to use epi if there is a potentially serious reaction, i.e., with tongue or throat swelling, difficulty breathing, if I have very high or low BP, and/or feel like I might pass out.  In other words, if it feels life threatening, don't wait.  It is much harder to reverse anaphylaxis once it's progressed than to stop it early, and it's not a good idea to risk circulatory collapse.

This is a good reason to have a mast cell specialist on board, regardless of how long you've had this.  They can recommend and help to tweak a medicine regimen to keep things stable.  The best way to avoid anaphylaxis is to stabilize our mast cells using daily medicines and extreme caution with triggers.  Some people have luck with certain nutritional supplements, too.  There are a number of questions that should be answered only by professionals, including when to use an epipen.

BBQ sauce can be a mine field of mast cell triggers.  Tomatoes are very high histamine, canned products, especially with tomatoes and peppers, can be high in mold (a trigger for some people), and vinegar is fermented, also a no-no on the low histamine diet.  Some commercial sauces have preservatives, as well.

Thanks. Great answers. I never thought to check my bp so I will next time.

It's interesting that anaphylaxis can progress at different rates. From talking
to my DD today, it seems her lungs became involved quickly. Mine don't.

I called my gp to request an epi pen. Now that I had tongue swelling I can see
that I'd feel better if I had that on hand.  I asked for a dr recommendation too.
I'd love to see a specialist but I'll wait to hear what my dr recommends.  I've been reading the comments on the different mast cell doctors tho and it looks
like the best option.

I can see now why bbq sauce wasn't a great idea.    I've gone a little nuts
since my mc protocal helped me so much but I can see now that wasn't a good idea. In my defense, I've been disabled with me/cfs with orthostatic intolerance for 23 years so being able to stand up for more than a few minutes without feeling light headed seemed like a miracle cure.  I'm back tho. No more risky foods.
Rats ..  

Thank you for your help. Tc .. Marcia

Hi Anaphylaxis,

I should've known better than to try that BBQ sauce but I went a little nuts when I started feeling better.  My bad.    ... I'm learning that I can't go back to eating trigger foods tho.

Ok, confession time.     Chocolate is back in my diet and I may not eliminate it again.    My reaction was horrible pelvic pain and swelling (vulvodynia ?) and that's not happening anymore. All this time I thought it was from oxalates but it turned out to be from mast cells.  

What brand of spices do you use ? I've been using Mc Cormick single spices most of the time since 2005. They were the only ones at the time that we were told were definitely GF. I'm a celiac. I use their Red Curry without any problems but that's they're only combo I use.  

I've never felt well from using any of the Annie's, Veganese, So Delicious, etc etc  products either tho so I make my own food. I hate cooking so it sucks.  

I checked out the low histamine diet and may need to look at my foods more closely. I eat quite a few of those.  My diet is just so restricted right now that I hate to give up things that I "seem" to be ok with.  

I've been on a mostly organic Wahls diet since Jan 2012, but I've been  on the  organic Paleo / low oxalate diet since 2007 - 8.  And I went on the GFCFSFEF + chemical free diet in June 2005.    

Tomatoes and bacon are FM triggers for me so I gave those up a few years ago.  Soy causes phlegm in my throat within 30 minutes. FWIW, I found soy in a lot of supplements this way.  I could get a job as a human soy detector.  

Dairy causes shiners and Paget's of the skull growth spurt. Gluten causes multiple neuro symptoms and digestive damage.  Nuts and chocolate cause pelvic pain. Poutry, esp chicken, makes me sleepy.  

I eliminated scented and bleached products too. Even those bleached paper towels bother me whereas the all natural ones don't.  I just figured out last year that I needed a non bleached toilet paper. DUH !

Thanks for all the advice. It means a lot to me to have others who are going through this that I can talk too.  

tc .. Marcia  

Hi,

I looked at your list and it looks like you're still eating gluten ? I'm not trying to sound like a health nut .. haha ... But I'm one of those who's convinced that no one should be eating this.  Dr. Rodney Ford has some great info on this.

I'm not sure what role chronic inflamation from gluten plays in our allergies. But I wasn't able to eat much of anything until I'd been on the elimination diet for about a year. No spices except salt like you.  

I'm thinking and re-thinking the whole chocolate angle. Since I know it's a trigger for me maybe I should just stop eating it even if I'm not currently getting that reaction.  I'm thinking it could be causing a reaction that I'm not aware of.        

tc ... M