Curious, how many people with a PA tolerate/trust peanut oil?

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YouKnowWho:
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).

StridAst:
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.

spacecanada:

--- Quote from: YouKnowWho on July 30, 2017, 10:58:55 AM ---Oh the irony, she can't eat Enjoy Life products :evil:

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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.

Ciel:

--- Quote from: StridAst on July 30, 2017, 12:53:02 PM ---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.

--- End quote ---

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?

StridAst:

--- Quote from: Ciel on July 31, 2017, 10:50:23 AM ---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 ???

--- End quote ---

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)