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Topic Summary

Posted by: TwoDDs
« on: October 25, 2017, 10:53:05 AM »

We allow Chik-fil-a when she will be within our supervision.  DD is 13.  Although her numbers are high - her threshold appears to be quite high as well.  And, we only have PN, some shellfish and some treenut to worry over.
Posted by: Penny
« on: August 13, 2017, 09:29:23 PM »

Thanks for the feedback.  I guess I'm just getting tired of feeling like some paranoid hypochondriac.  Esp when you read about "highly refined oils" being safe for allergies.  Yet the same idiots who claim that, aka the FDA, don't require anyone to list how the oils in our food we're refined.

I'm not nearly as careful as I used to be, but that said, I would not risk peanut oil. I don't trust that the average restaurant, cafe, etc. knows the difference between refined and unrefined peanut oil. Not worth the risk.
Posted by: Ciel
« on: August 01, 2017, 11:19:02 AM »

Thank you! I copied the last three posts to EE and/or Mast Cell Disorders in Adults
Posted by: StridAst
« on: August 01, 2017, 10:57:47 AM »

You are of course welcome to start a thread on this.  I will contribute as I can.
Posted by: Ciel
« on: August 01, 2017, 09:44:52 AM »

Oh wow, thank you StridAst. I need to look into this more. So much seems to be spot on after initial skimming.

I booked a tree nut challenge for September so I have until then to gather info to talk to the allergist about this.

Do you mind if I start a dedicated thread for this? I know we have chatted a bit in the thread about EE and a lot of what you said there also hit home. I would love to try to make a clearinghouse thread to explore how all of this stuff is related. I have many questions! I also think I need to summarize my own history so I can see it better and would be interested in comparing notes with you about your journey in all this (as much as you are comfortable sharing).
Posted by: StridAst
« on: July 31, 2017, 05:57:02 PM »

I have not been diagnosed with MCAS of EoE though. And all IgE allergy testing keeps coming back negative. My allergist called me this morning to talk about food challenges, and she touched on the fact that some reactions don't seem to be IgE mediated but nobody knows what does trigger them, because the reactions are to all appearances anaphylactic. And epinephrine helps. I was diagnosed with cold urticaria as a teen, a non-IgE mediated anaphylactoid reaction to sudden drop in body temperatures. It seems to have become much less severe over the last 18 years though, now the worst I get is a few hives and my ears or hands sometimes swell a little. I have reacted significantly to intense exercise. Sometimes the severe GI distress seems to be obviously tied to a food and other times it seems to be random so I don't know if it is a reaction from residual contamination from a known allergy, a new food reaction, or anxiety, or what ???

Thanks!  I want to add that your story sounds *exactly* like a mast cell disorder.  Seriously, look into it.  There are two main types. MCAS (likely not rare, but no hard knowledge as to it's prevalence) and Mastocytosis (1 in 200,000 rare). Symptoms are mostly the same between the two.

Things to know:  MCAS was only accepted by the world health organization in 2007.  So most doctors are unaware it even exists.  Older diagnossis likely predate it's discovery.   Even now the places that know about it are the more well known university hospital's or research clinics.  Here in Utah there is just the U of U hospital's allergy department that knows anything about it.  Other good examples include the Mayo Clinic.  Reputable places that are more clued in on recent medical knowledge.   It's also a hard one to test for. (24 hour urine collection and testing seriously sucks.  So does needing tryptase taken while you are having a major flare and *might* make a 5 min drive without risking an accident.)

Hallmarks of mast cell disorders are along the lines of allergic reactions you test negative to, and or allergic reactions to things you can't be truly allergic to, like heat/cold, exercise,  chemical smells and many other things.  For me, yet another clue that a mast cell disorder was going on was dermatographia (Google it). 

https://www.novapublishers.com/catalog/product_info.php?products_id=42603

That's a peer reviewed paper written by one of the few experts on MCAS.  You might find it enlightening.  Look into it.   Also, anxiety can sometimes be an anaphylactic reaction.  That whole "feeling of doom" stuff.  To me, I get this at every major flare, I feel like I'm about to lose everything and everyone.  Like my whole world is going to collapse out from under me.  And yes, it can be both symptom AND trigger for someone with a mast cell disorder, which can really drag out the duration of a flare.  Kind of a feedback loop. (5 weeks to get feeling "normal" again is my worst record)
Posted by: Ciel
« on: July 31, 2017, 10:50:23 AM »

My problem is it's hard for me to pick apart my reactions with certainty, as I have more than just allergies.  I also apparently have a mast cell disorder, as well as eosinophilic esophagitis.  Both the MCAS and the EoE can cause reactions that you can't test for. (Non IgE mediated). MCAS can also cause reactions to things like sunlight, exercise, heat, emotional stress, etc. Also, MCAS, EoE, and food allergies all interact with each other. There isn't an obvious difference between an MCAS reaction and a food reaction, so it becomes much *much* harder to be 100% certain as to why I'm having severe GI distress, hives, a feeling of impending doom, difficulty swallowing, etc.   So I get stuck taking way too many pills, avoiding way too many foods, and much guessing as to what causes what.

I feel for you. I am still trying to figure out my own, somewhat similar issues. Same symptoms you are describing, reactions to foods, exercise, heat/cold, and maybe emotions (I haven't paid enough attention to be sure but I think it has happened -- If I get really upset and panicky I tend to flush and get hives on my face, but I'm not sure if that is a normal physiological response to anxiety or not).

I have not been diagnosed with MCAS of EoE though. And all IgE allergy testing keeps coming back negative. My allergist called me this morning to talk about food challenges, and she touched on the fact that some reactions don't seem to be IgE mediated but nobody knows what does trigger them, because the reactions are to all appearances anaphylactic. And epinephrine helps. I was diagnosed with cold urticaria as a teen, a non-IgE mediated anaphylactoid reaction to sudden drop in body temperatures. It seems to have become much less severe over the last 18 years though, now the worst I get is a few hives and my ears or hands sometimes swell a little. I have reacted significantly to intense exercise. Sometimes the severe GI distress seems to be obviously tied to a food and other times it seems to be random so I don't know if it is a reaction from residual contamination from a known allergy, a new food reaction, or anxiety, or what ???

Just wanted to say I hear you and I totally understand  :grouphug:


I do avoid peanut oil, though, because why risk it?
Posted by: spacecanada
« on: July 30, 2017, 11:14:45 PM »

Oh the irony, she can't eat Enjoy Life products  :evil: 
Enjoy Life uses sunflower oil in many of their products!  It's not on the Canadian labels, unfortunately - just vegetable oil.  I'm allergic to many of their products as well due to sorghum flour. 
Posted by: StridAst
« on: July 30, 2017, 12:53:02 PM »

Good to hear she can handle the oils. :)  I find I react definitely to sunflower oil and safflower oil.  Both leave me with severe enough brain fog that I've been asked if I was drunk.  (I'm a non-drinker)  I can handle soybean oil/lecithin in small quantities, but if I have too much I *think* I start to react, so I try not to eat things fried in soy oil.  The last serious major reaction I had was last year, to "vegetable magnesium stearate" I think.  From non drowsy Dramamine.  I checked food labels, but was stupid and didn't read the labels on the pills.

My problem is it's hard for me to pick apart my reactions with certainty, as I have more than just allergies.  I also apparently have a mast cell disorder, as well as eosinophilic esophagitis.  Both the MCAS and the EoE can cause reactions that you can't test for. (Non IgE mediated). MCAS can also cause reactions to things like sunlight, exercise, heat, emotional stress, etc. Also, MCAS, EoE, and food allergies all interact with each other. There isn't an obvious difference between an MCAS reaction and a food reaction, so it becomes much *much* harder to be 100% certain as to why I'm having severe GI distress, hives, a feeling of impending doom, difficulty swallowing, etc.   So I get stuck taking way too many pills, avoiding way too many foods, and much guessing as to what causes what.
Posted by: YouKnowWho
« on: July 30, 2017, 10:58:55 AM »

Just double checked but yes, canola oil.

As of right now, DD tolerates soy lecithin and oil and sunflower oil.  She does not tolerate soy flour, protein, sauce, tvp or actually sunflower seeds/butter.  Allergist wants to keep what she can in her diet to avoid total sensitization.  Oh the irony, she can't eat Enjoy Life products  :evil:  Gallows humor, but she started having reactions at a point when we thought she have crossed the line of likely not developing food allergies (she had her first reaction to macadamia at 4.5, she had eaten them prior with no issue).
Posted by: StridAst
« on: July 30, 2017, 10:14:58 AM »

Agreed on avoiding chic-fil-a for reasons beyond allergic reasons.  Are you saying they always fry their french fries in canola oil?  Interesting.   I've been avoiding even french fries for a couple years now, due to pretty much everywhere uses soybean oil.

Soy and sunflower is a *really* tough mix to avoid.  (So I have real sympathy to your DD on that account).  Mostly I have just been trying to decide if I should really be this strict on avoiding things.  With soybean, sunflower, safflower, and peanut, that's a lot of oils to avoid. Toss in onion and garlic and you can imagine how often I eat out these days.  But I was avoiding chic-fil-a for a couple years before the allergy stuff really started for me.  My wife and daughter like them though, and since I've reacted to trace amounts of peanuts before, I try to have them wash their hands immediately, don't eat in the car, etc. So I feel like I'm being paranoid about peanuts, especially because of the FDA claims about highly refined oils.
Posted by: YouKnowWho
« on: July 29, 2017, 04:39:29 PM »

We don't do peanut oil but my kids get the grilled nuggets and french fries (fried in canola oil, not peanut).  CFA is not a regular thing for us but it has definitely saved us in locations that there are not safe options.  But I am also dealing with more than just peanut allergies and find it often harder to feed my kid who is allergic to wheat, rye, barley and egg.  It is one of the few places where he can have french fries.

For various reasons though, I hate giving them my money.  Hence the emergency only option.
Posted by: Macabre
« on: July 12, 2017, 11:04:29 PM »

My son had a bad reaction after eating chips fried in "safe" peanut oil at Panera around 2003. He also got hives after eating at CFA when he was a toddler. He actually used to cry when I pulled up to CFA, so I have it a rest for the better part of a year and when I went back, he had hives where the chicken strips made contact with his face.

He's 19 now. We don't do regular peanut oil.
Posted by: CMdeux
« on: July 12, 2017, 09:36:27 PM »

^



FRAME-WORTHY.

 :yes: :smooch:
Posted by: gvmom
« on: July 10, 2017, 02:47:20 PM »

I guess I'm just getting tired of feeling like some paranoid hypochondriac.

Why are you feeling like that? 

When it comes to LTFA's we have always had the policy that no food is more important than someone's life.  The need to be safe & alive outweighs wants that are optional or someone else rolling their eyes. 

And, we have typically learned that so-called experts on food allergies know very little compared to people who actually live with them.

Frankly, if the FDA really did care about food safety, they'd be more pro-active and have more requirements about the real information that should be on packaging.

Taking it further, I'd actually prefer it if the whole concept of "comfort zones" with respect to food allergies actually was more accurately titled "risk assessment" or "risk management". 

How much risk are you willing to take with your life to find out if you are going to eat things cooked in peanut oil?  How much risk are you willing to take in deciding what you eat based on the amount of information you are able to find, and who that information comes from, with respect to PA individuals and their ability to ingest peanut oil?

Because, effectively, the "comfort zone" is really how comfortable you are taking a risk with whatever odds that come with a given situation or food.