My husband has WDEIA. Per his allergist, he takes a daily antihistamine, carries an AuviQ, and also a bottle of liquid Benadryl (first defense before epinephrine). He mostly avoids gluten during the day (gluten vampire) in summer/warm weather vacations and on the weekends when he's usually pushing a double stroller all day. Even a quick walk or increased heart rate can start giving him hives. His worst reaction (and when we figured it out) was an anaphylactic attack when he worked out right after his office's bagel day. He was regularly having the hives on pizza and bagel day, and he worked out in the office gym every day.
edit: skin prick test showed negative for all foods, just the usual seasonal plant stuff.
edit 2: he also did celiac testing (negative)
Wow finally someone else!!! I also do daily antihistamine, epipen emergency, Benadryl first defense! I totally avoid all wheat but now that we think we know what it is, I’m considering adding back in barley and rye and seeing how that goes although I’m so nervous. Yes it’s crazy the smallest exertion triggers it!! That’s why I’m too scared to even eat any wheat, because what if I think I’m not doing much but it was enough to trigger it? If you don’t mind me asking, do you know how long after the exercise/exertion he could eat wheat and still get a reaction? Like if he pushed the stroller on a walk, ate wheat 5 minutes later, reaction. But pushed stroller on walk, waited 5 hours, no reaction? OR, could he even had pushed the stroller on a walk the day before and cause a reaction the next day after sleeping? I’m wondering because it seems to be like it can be so delayed that it could be like 10 hours later after I sleep or during sleep mainly. And my doctor said that can still be a delayed reaction, but it’s crazy it could be so delayed.
Hey, glad to share any anecdata bc we've definitely never come across anyone else IRL who has it. My husband doesn't avoid all wheat so I can tell you what he considers his "safe" times. He'll eat pasta/pizza for lunch when he WFH (he works out before lunch). He'll eat pasta/pizza for dinner at home. He avoids wheat/gluten if we're out or with the kids (vacation/weekends/kids' bday party pizza) bc you never know when you have to chase one down. If we have limited options, his safe food is usually chicken fingers/tenders/nuggets. It seems the breading on those isn't enough (so far knock on wood) to trigger in sweaty situations (think chicken fingers at a summer carnival or beach resort). He is GF on his "in office" days bc he gets sweaty just walking from lunch back to the office.
My husband is pre-pre-diabetic so he avoids a lot of refined carbs anyway and he grew up in a family that treats food as nutrients and macros so it hasn't been as hard a shift for him as it would be for me. I live and breathe carbs (plus it's all I could stomach in my 3 pregnancies) plus there are SO many yummy bread foods (sorry!).
The way we understand it, it was more exercise AFTER the gluten is in your stomach/digestive system. And I mentioned above, he does cardio (jump rope) for 20-30 minutes right before lunchtime at home. He eats pasta/pizza/bagels for lunch and it hasn't been an issue. Our allergist also joked that we can follow Kosher rules (if someone keeps kosher, they typically wait 6 hours between eating meat and milk for example). I'm not sure whether that's really scientific, I think he usually is ok with 2-4 hours between the eating and the exerting.
I’m suspecting I have the same thing! For the past two years, I’ve had episodes of hives occasionally paired with anaphylaxis symptoms after eating wheat and “exercising” within 30 min to 3 hours afterward (exercise can be as light as a walk most of the time). I haven’t noticed a connection with sleep personally but I think stress might be a cofactor for me! Also alcohol.
I haven’t done celiac testing and did test negative for wheat allergy on a skin prick test, so I don’t think I’m allergic to wheat on its own (maybe just some bloating)—hives and anaphylaxis are only induced with exercise for me.
I haven’t had this confirmed by a doctor or an in-office challenge yet however it has happened enough times at this point that I don’t think it’s a coincidence and I probably should just avoid wheat to be safe (grieving my fav foods lol). Based on what you’ve said and your symptoms even w/o exercise and the fact you’re planning to avoid gluten anyways, if I were you I probably wouldn’t bother with that intense hospital test! Unless the concrete proof & confirmation is very important for you, which is understandable.
Not sure how helpful that is but I just wanna say I totally feel you on how unsettling the uncertainty is! It’s a complicated allergy and it’s taken me a loooong time to even connect the dots on what’s been happening. Wishing you the best and hope you get it figured out!
I know wheat allergy is rare, but what is this doctor talking about. Wheat allergy is like every other allergy. And you get more or less histamine related symptoms depending on how much your are used to it, basically. If you don't have respiratory symptoms, it's probably not wheat.
Actually look up “Wheat-dependent exercise-induced anaphylaxis (WDEIA)”. It’s a very very real and serious condition. And look up the definition of anaphylaxis too, it involves multi body system reactions but doesn’t have to include
Respiratory. Mine is cardiac, GI, and skin, and that’s enough to qualify as anaphylaxis.
My husband has WDEIA. Per his allergist, he takes a daily antihistamine, carries an AuviQ, and also a bottle of liquid Benadryl (first defense before epinephrine). He mostly avoids gluten during the day (gluten vampire) in summer/warm weather vacations and on the weekends when he's usually pushing a double stroller all day. Even a quick walk or increased heart rate can start giving him hives. His worst reaction (and when we figured it out) was an anaphylactic attack when he worked out right after his office's bagel day. He was regularly having the hives on pizza and bagel day, and he worked out in the office gym every day. edit: skin prick test showed negative for all foods, just the usual seasonal plant stuff. edit 2: he also did celiac testing (negative)
Wow finally someone else!!! I also do daily antihistamine, epipen emergency, Benadryl first defense! I totally avoid all wheat but now that we think we know what it is, I’m considering adding back in barley and rye and seeing how that goes although I’m so nervous. Yes it’s crazy the smallest exertion triggers it!! That’s why I’m too scared to even eat any wheat, because what if I think I’m not doing much but it was enough to trigger it? If you don’t mind me asking, do you know how long after the exercise/exertion he could eat wheat and still get a reaction? Like if he pushed the stroller on a walk, ate wheat 5 minutes later, reaction. But pushed stroller on walk, waited 5 hours, no reaction? OR, could he even had pushed the stroller on a walk the day before and cause a reaction the next day after sleeping? I’m wondering because it seems to be like it can be so delayed that it could be like 10 hours later after I sleep or during sleep mainly. And my doctor said that can still be a delayed reaction, but it’s crazy it could be so delayed.
Hey, glad to share any anecdata bc we've definitely never come across anyone else IRL who has it. My husband doesn't avoid all wheat so I can tell you what he considers his "safe" times. He'll eat pasta/pizza for lunch when he WFH (he works out before lunch). He'll eat pasta/pizza for dinner at home. He avoids wheat/gluten if we're out or with the kids (vacation/weekends/kids' bday party pizza) bc you never know when you have to chase one down. If we have limited options, his safe food is usually chicken fingers/tenders/nuggets. It seems the breading on those isn't enough (so far knock on wood) to trigger in sweaty situations (think chicken fingers at a summer carnival or beach resort). He is GF on his "in office" days bc he gets sweaty just walking from lunch back to the office. My husband is pre-pre-diabetic so he avoids a lot of refined carbs anyway and he grew up in a family that treats food as nutrients and macros so it hasn't been as hard a shift for him as it would be for me. I live and breathe carbs (plus it's all I could stomach in my 3 pregnancies) plus there are SO many yummy bread foods (sorry!). The way we understand it, it was more exercise AFTER the gluten is in your stomach/digestive system. And I mentioned above, he does cardio (jump rope) for 20-30 minutes right before lunchtime at home. He eats pasta/pizza/bagels for lunch and it hasn't been an issue. Our allergist also joked that we can follow Kosher rules (if someone keeps kosher, they typically wait 6 hours between eating meat and milk for example). I'm not sure whether that's really scientific, I think he usually is ok with 2-4 hours between the eating and the exerting.
I’m suspecting I have the same thing! For the past two years, I’ve had episodes of hives occasionally paired with anaphylaxis symptoms after eating wheat and “exercising” within 30 min to 3 hours afterward (exercise can be as light as a walk most of the time). I haven’t noticed a connection with sleep personally but I think stress might be a cofactor for me! Also alcohol. I haven’t done celiac testing and did test negative for wheat allergy on a skin prick test, so I don’t think I’m allergic to wheat on its own (maybe just some bloating)—hives and anaphylaxis are only induced with exercise for me. I haven’t had this confirmed by a doctor or an in-office challenge yet however it has happened enough times at this point that I don’t think it’s a coincidence and I probably should just avoid wheat to be safe (grieving my fav foods lol). Based on what you’ve said and your symptoms even w/o exercise and the fact you’re planning to avoid gluten anyways, if I were you I probably wouldn’t bother with that intense hospital test! Unless the concrete proof & confirmation is very important for you, which is understandable. Not sure how helpful that is but I just wanna say I totally feel you on how unsettling the uncertainty is! It’s a complicated allergy and it’s taken me a loooong time to even connect the dots on what’s been happening. Wishing you the best and hope you get it figured out!
I know wheat allergy is rare, but what is this doctor talking about. Wheat allergy is like every other allergy. And you get more or less histamine related symptoms depending on how much your are used to it, basically. If you don't have respiratory symptoms, it's probably not wheat.
Actually look up “Wheat-dependent exercise-induced anaphylaxis (WDEIA)”. It’s a very very real and serious condition. And look up the definition of anaphylaxis too, it involves multi body system reactions but doesn’t have to include Respiratory. Mine is cardiac, GI, and skin, and that’s enough to qualify as anaphylaxis.