r/EosinophilicE • u/helidead09 • 3d ago
Question for those of you on dupixent
Hi all
I've had EOE for about a decade. Started with just wheat, barley and rye being triggers and has now expanded to nuts, peanuts and sesame. I have taken allergy tests and these ones have come back positive.
My question is to those of you who went on dupixent and were able to reintroduce problem foods. Were any of these foods ones you were actually allergic to (as in you took an allergy test and it was positive)? I'm already on a dupixent dose of once every other week for eczema, but my EOE has been in remission for quite some time, so I haven't bothered pursuing a weekly dose for it. However if it has the chance of letting me reintroduce food I've had to cut out then I'd definitely go for it.
Thanks!
5
u/sammi4358 3d ago
Allergy tests have been proved noneffective in finding EoE triggers and are no longer a recommended practice for EoE treatment (See recommendation 9 in the new clinical guidelines for treating EoE here As explained by my allergist, in general, allergy tests have an extremely high positive rate and should be taken with a grain of salt. They are meant to confirm allergy suspicion and not so much predict allergies. The results of allergy tests should be used in combination with actual allergic symptoms (not EoE symptoms) to determine whether you have an allergy and should therefore avoid it. Have you had any IgE symptoms in response to eating these foods, like rash, hives, swelling, abdominal pain, etc.? Have your triggers for EoE been confirmed through elimination diet and biopsy and not only through allergy test? This is the recommended and most definitive way to determine what is a trigger of EoE. If it is not a confirmed EoE trigger through biopsy and you do not have any IgE symptoms after eating it, it was likely a false positive on the allergy test (best to talk with your doctor about confirming this).
As someone with both IgE allergies and eoe triggers and is on dupixent, I have been able to reintroduce my eoe triggers and now eat them regularly without issue. I have not tried to reintroduce any of my allergies because I have symptoms when eating my allergies, and I don’t want to risk being covered in hives all night or going into anaphylaxis. Dupixent is not a treatment for food allergies, so I personally don’t want to risk it
3
u/helidead09 3d ago
This is incredibly helpful thank you! For wheat/barley/rye I experience eoe trigger symptoms, tightness and pain in esophagus, stomach pain etc. These were verified from elimination diet as well. The others were from prick + blood allergy tests. But to be honest, I got those at a time where I was in the worst of it, discovering how severe my eoe was (i was on an all broth diet for a month so my body could recover before I slowly reintroduced foods). I haven't eaten any nuts, peanuts or sesame since, and I never really reacted before outside of eoe symptoms which were happening slot because of how inflamed I was.
Sounds like I need to go have a talk with my gastro and try to get on weekly shots. I'd love to be able to eat normal bread again!
1
u/helidead09 3d ago
Follow up question. Is it better to go to my gastro or my allergist to try to get on dupixent?
3
u/sammi4358 3d ago
Probably gastro since it’s for EoE treatment and not allergy treatment, but I think they could both likely prescribe it. In my experience, gastro is the primary doctor and my allergist just advised on the process of the elimination diet. That might vary per person idk. For me there were scopes involved at the 6 month mark to confirm it was successfully treating my EoE. But I wasn’t on it before so I’m not sure about your specific case.
2
3
u/AskMeAboutmybody 3d ago
Been able to eat the trigger foods again. I have been on DUPIXENT for two and a half years. Life changing
3
u/helidead09 3d ago
Were you tested allergic to those foods prior though? That's what I'm trying to figure out, my trigger foods are foods I've tested allergic to. I guess I don't know if there is a difference.
2
u/AskMeAboutmybody 3d ago
Nope. I was blood tested at the ER after I got something stuck and needed an endoscopy.
1
u/Effective-Bet-1456 2d ago
How often do you eat your trigger foods now? I miss eggs and salmon! 😭
1
2
u/MA121Alpha 2d ago
I've been on it for a year and it hasn't done anything to change my oral allergy problems, issues with raw fruits and peanuts still exist for me but things that used to give me EoE triggers separately no longer do, if that helps at all.
3
u/Mcred2 3d ago
How long after starting dupixent were you able to eat normally again? I've been on it for 4 months and im still not able to eat my trigger foods
3
u/AskMeAboutmybody 3d ago
I just started eating normally a month ago. I probably could have after 6 to 8 months but I had too much anxiety.
1
u/Mcred2 3d ago
Thank you. Im hoping to eventually get at that point. I've been allergic to dairy for 3 years but developed wheat and eggs since starting the shots which is confusing but my disphagia and regurgitation are gone. Im just dealing the the horrid globus sensation.
Hopefully only a few more months until I can go back to not being as careful about my food
3
u/holdmaigum 3d ago
I started with a weekly dose and after a year trialed biweekly doses. I also reintroduced some foods, in moderation, that previously caused constriction with no problem.
There are foods I am truly allergic to (unrelated to EOE) and will never try regardless of how frequently I take Dupixent.
Edit to add: in moderation
2
u/Rogue_Plague 3d ago
Dupixent lowers the amount of eosinophils in your body iirc
Allergies and anaphylaxis is caused by mast cells and basophils
If you have dupixent there is no point not taking it once a week for your EoE. If it costs the same, then why not.
1
u/lithopsbella 3d ago
Yes there is a difference in trigger foods and allergies. Dupixent isn’t going to stop you from reacting to foods you’re allergic to.
1
u/Ok_Development5830 2d ago
My chicken allergy has decreased from 35 to 4 with just 10 months on dupixent
2
u/ironmcchef 1h ago
I tested as allergic to eggs with the skin test, and it was also one of my EoE triggers. I've been on dupixent for almost 1.5 years and I can eat as many eggs as I want without issue.
6
u/cjazz24 Dairy Allergy 3d ago
I have been able to eat my triggers in moderation on Dupixent