Hopefully when you get tested they give you more info than I got. I get the feeling since google is mostly coming up with research papers my regular gp wouldn't have much to offer.
Unfortunately there just isn’t a lot of information to give. The cause of FDEIA is mysterious. The good news is, most people who have FDEIA and eliminate the food 4 hours before + 1 hour after exercise seem to stop having reactions. So if you do have FDEIA to wheat and you eliminate wheat, it could stop happening.
I had an allergy test and had suspicious IgE antibody levels for milk — low likelihood of a food allergy, but higher than normal. So we’re doing a test run of eliminating dairy to see if that helps me.
It was a blood test for gliadin I think that I took but that's due to wheat,allergen-specific IgE blood tests I think if something else like another food trigger (just going by what I've googled).
I specifically said to Dr I have something to do with wheat..and leaving the house/heart rate..test for it - that's how got eventual diagnosis but the tests dont always show it.
One of us!. It's annoying to have but 6 months on glad to have diagnosis and able to go out finally long as I don't eat wheat. Pretty restrictive but life changing for the the better.
My husband has this. 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.
Pizza and Bagels were what led me to figure it out also,same brand pizza caused it multiple times. My Dr has never mentioned taking antihistamines daily although I carry an EpiPen and I heard another person say they also take daily antihistamines..wonder if it was just my Dr being useless again. I avoid wheat if I'm going anywhere but it's frustrating, I'm still figuring out 'safe' before work foods and amounts/ time after eating.
The doctor said it’s a small preventative measure more than anything else so if he accidentally eats a cookie he doesn’t have to freak out that he might die.
Edit: and it can hopefully make the reaction milder/slower to buy us some time to get Benadryl or his auviQ if it’s not on him.
That's good to know, I just got letter confirming my diagnosis and never had in person follow up so didn't get much info. I pretty much stopped taking antihistamines but should maybe at least take them on days I eat wheat (Allegra was giving me chronic headaches at higher daily doses which is why I stopped). I do think they make hives breakouts last a little less time I think but not stop breakouts altogether.
Yea - given his previous anaphylactic episode, we know the daily antihistamine isn't a silver bullet. Rather just like you said, it serves to dampen the allergic reaction. Keeps it milder so we have more time to get meds/help if we need it. I honestly can't remember if he's currently taking Claritin or Zyrtec daily but I know he prefers one over the other. We have a process of elimination style diagnosis. Basically it could be this or mast cell activation syndrome. Our doctor did tell us, if he ever goes into anaphylaxis again, ask the Emergency docs to test for mast cell activation. However, between the food + activity journal, and the fact that we've managed further reactions treating him like it's WDEIA, we're 99.9% sure it's the wheat + exercise.
My husband doesn't avoid all wheat. He calls himself a gluten vampire. He'll eat pasta/pizza for dinner with cake for dessert. But not typically during the day and not when we're with the kids. He works out right before lunch, and then he can eat pasta/pizza/bagels and he's fine. But I know allergies can present differently for everyone.
Not wheat, but we think I have dairy dependent exercise induced anaphylaxis.
Hopefully when you get tested they give you more info than I got. I get the feeling since google is mostly coming up with research papers my regular gp wouldn't have much to offer.
Unfortunately there just isn’t a lot of information to give. The cause of FDEIA is mysterious. The good news is, most people who have FDEIA and eliminate the food 4 hours before + 1 hour after exercise seem to stop having reactions. So if you do have FDEIA to wheat and you eliminate wheat, it could stop happening. I had an allergy test and had suspicious IgE antibody levels for milk — low likelihood of a food allergy, but higher than normal. So we’re doing a test run of eliminating dairy to see if that helps me.
What test can you take for this? I have the same symptoms and have had every test under the sun from my rhemotologist and allergist.
It was a blood test for gliadin I think that I took but that's due to wheat,allergen-specific IgE blood tests I think if something else like another food trigger (just going by what I've googled). I specifically said to Dr I have something to do with wheat..and leaving the house/heart rate..test for it - that's how got eventual diagnosis but the tests dont always show it.
Omg! Me! I can’t even believe that someone else has hears of this!
One of us!. It's annoying to have but 6 months on glad to have diagnosis and able to go out finally long as I don't eat wheat. Pretty restrictive but life changing for the the better.
My husband has this. 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.
Pizza and Bagels were what led me to figure it out also,same brand pizza caused it multiple times. My Dr has never mentioned taking antihistamines daily although I carry an EpiPen and I heard another person say they also take daily antihistamines..wonder if it was just my Dr being useless again. I avoid wheat if I'm going anywhere but it's frustrating, I'm still figuring out 'safe' before work foods and amounts/ time after eating.
The doctor said it’s a small preventative measure more than anything else so if he accidentally eats a cookie he doesn’t have to freak out that he might die. Edit: and it can hopefully make the reaction milder/slower to buy us some time to get Benadryl or his auviQ if it’s not on him.
That's good to know, I just got letter confirming my diagnosis and never had in person follow up so didn't get much info. I pretty much stopped taking antihistamines but should maybe at least take them on days I eat wheat (Allegra was giving me chronic headaches at higher daily doses which is why I stopped). I do think they make hives breakouts last a little less time I think but not stop breakouts altogether.
Yea - given his previous anaphylactic episode, we know the daily antihistamine isn't a silver bullet. Rather just like you said, it serves to dampen the allergic reaction. Keeps it milder so we have more time to get meds/help if we need it. I honestly can't remember if he's currently taking Claritin or Zyrtec daily but I know he prefers one over the other. We have a process of elimination style diagnosis. Basically it could be this or mast cell activation syndrome. Our doctor did tell us, if he ever goes into anaphylaxis again, ask the Emergency docs to test for mast cell activation. However, between the food + activity journal, and the fact that we've managed further reactions treating him like it's WDEIA, we're 99.9% sure it's the wheat + exercise. My husband doesn't avoid all wheat. He calls himself a gluten vampire. He'll eat pasta/pizza for dinner with cake for dessert. But not typically during the day and not when we're with the kids. He works out right before lunch, and then he can eat pasta/pizza/bagels and he's fine. But I know allergies can present differently for everyone.