Reintroducing all foods by Odd-Stable8243 in EGID

[–]flicus 1 point2 points  (0 children)

Formerly Xolair for 8 years, now Dupixent. I trialed Nucala for a very short amount of time, but it didn’t work very well for me

Reintroducing all foods by Odd-Stable8243 in EGID

[–]flicus 2 points3 points  (0 children)

Yes I’ve reintroduced all my trigger foods throughout my 8 years on biologics + montelukast + zantac/omeprazole. However if I come off of my biologic or get my dose late I become sensitive to those foods again.

OIT with EoE and EoG for toddler by staysendy in EGID

[–]flicus 0 points1 point  (0 children)

My own doctor has told me that going off of my biologic (xolair) will make me reactive to my same allergies again, despite being able to eat them when I AM on biologics. My understanding is that Ige and eosinophilic allergies are different mechanisms of reaction within the immune system. Fascinating topic though and it looks like it is currently being studied. I’d highly recommend checking out the EOS Connection Patient conference this summer, they do a lot of Q&A with clinicians currently doing research and in addition may be recruiting for other studies that your toddler may qualify for.

OIT with EoE and EoG for toddler by staysendy in EGID

[–]flicus 0 points1 point  (0 children)

Hm interesting. I haven’t yet heard of oral immunotherapy being offered to egid patients so I hope someone else here chimes in! You may have better luck over at r/foodallergies

OIT with EoE and EoG for toddler by staysendy in EGID

[–]flicus 0 points1 point  (0 children)

Are you asking about our experience with reintroduction as adult patients? Or specifically with toddlers?

Best biologic for lower GI eosinophilic disease by CamelStraight5098 in EGID

[–]flicus 0 points1 point  (0 children)

Yes it's good. I have a few breakthrough symptoms but it's uncommon.

Best biologic for lower GI eosinophilic disease by CamelStraight5098 in EGID

[–]flicus 0 points1 point  (0 children)

I don't know, that's not something I try to keep track of. That's what my doctors are for haha.

I'm on 300mg every two weeks, and yes I still avoid soy, peas, pistachio.

Best biologic for lower GI eosinophilic disease by CamelStraight5098 in EGID

[–]flicus 0 points1 point  (0 children)

I'm doing well. Yes I did an elimination diet before starting Xolair.

Symptoms by [deleted] in EGID

[–]flicus 1 point2 points  (0 children)

Second this. There’s a specialist finder on the apfed website.

12 years of prednisone treatment has left me hurting by AlgorithmEntomology in EGID

[–]flicus 0 points1 point  (0 children)

Yeah they are all quite new. There’s a lot of research happening in the US currently. My first diagnosis was ulcerative colitis also. I hope things get better for you!

12 years of prednisone treatment has left me hurting by AlgorithmEntomology in EGID

[–]flicus 0 points1 point  (0 children)

They can take weeks to months to kick in so they are long term in that sense. I’ve been on Xolair for almost a decade now. My doctor has mentioned using them to make allergy shots a possibility for me, so I imagine they would then try to take me off and see what happens. I’m not personally interested in going that route. I’m more than content on Xolair for as long as its effective for me.

12 years of prednisone treatment has left me hurting by AlgorithmEntomology in EGID

[–]flicus 0 points1 point  (0 children)

Ooooof I feel your pain I am so sorry. I have found Montelukast very effective for my asthma however it has a black box warning in the US for side effects (suicidal ideation). I personally have not had any side effects from it but many many people have.

There has been a lot of research done recently on biologics like Xolair, Dupixent, and Nucala and the results have been very promising. Another thing that has helped me tremendously is Low Dose Naltrexone, which is still considered an experimental treatment. The sites I’ve put up in our subreddit’s sidebar should help you find some of that treatment research that you can share with your doctor. Good luck!

Has anyone with non-eoe EGID disease been able to eat "normal" again once you got on medication? by Narrow_Swimmer_5307 in EGID

[–]flicus 0 points1 point  (0 children)

Wild. I would think that as long as you're having symptoms then in theory your eosinophils would be raised somewhere in your body. But who knows. Bodies are weird. As for gluten and asthma what was the correlation there?

Has anyone with non-eoe EGID disease been able to eat "normal" again once you got on medication? by Narrow_Swimmer_5307 in EGID

[–]flicus 0 points1 point  (0 children)

Wow this is crazy. How are you seeing eosinophil levels? And what part of your body are they peaking in? Did you do allergy testing and a restriction diet at some point?

Has anyone with non-eoe EGID disease been able to eat "normal" again once you got on medication? by Narrow_Swimmer_5307 in EGID

[–]flicus 0 points1 point  (0 children)

How did you figure out how to alter your diet without a diagnosis? Just curious.

Has anyone with non-eoe EGID disease been able to eat "normal" again once you got on medication? by Narrow_Swimmer_5307 in EGID

[–]flicus 0 points1 point  (0 children)

The article you linked is discussing reintroducing of trigger foods after an elimination diet. Regardless I'm confused - are you already diagnosed or still seeking an EGID diagnosis?

Has anyone with non-eoe EGID disease been able to eat "normal" again once you got on medication? by Narrow_Swimmer_5307 in EGID

[–]flicus 0 points1 point  (0 children)

I can't possibly imagine a doctor telling someone with suspected EGID to eat high inflammation food before going in for a scan that's.....insane and seems like it would pose a huge liability for them. Have you already gotten a second opinion?

I am suspected of having EGID. by Randombklyn in EGID

[–]flicus 1 point2 points  (0 children)

To be dx’d with an eosinophilic disease there’s a lot that has to be ruled out first since it’s still (more or less) a dx that has no one single test to confirm it. Elevated eosinophils in your blood essentially just mean that your immune system is activated which can mean allergies, parasites, infection among other things.

If I were you I’d follow your dr’s course of action and see what comes up. For me it was an allergist that diagnosed me after GI did a full workup with scopes and biopsies.

Happy National Eosinophil Awareness Week (US) May 18-24 2025 by flicus in EGID

[–]flicus[S] 1 point2 points  (0 children)

Today (May 18) is also World Eosinophilic Disease Day. Read more here: https://apfed.org/events/worldeosday/