Would love to talk with people with Eosinophilic esophagitis (EoE)

Would love to talk with people with Eosinophilic esophagitis (EoE)

My sons and husband have been dealing with EoE for a number of years. My husband has already suffered a puncture of the esophagus and subsequent emergency thoracotomy. I am terrified my young adult sons will end up in the same situation. My husband almost didn't survive & it financially devastated us. Anyone with EoE - helpful hints, medications, promising protocols or developments or other information sharing would be fantastic. I am hoping… read more

A MyFoodAllergyTeam Member said:

Sorry to hear about your struggle. I can't imagine with someone so young. Our four kids have had allergies their whole lives ( whole body hives reactions to foods *I* ate while nursing them, etc, right up to anaphylaxis...) but back then there was not a lot of "testing" and EoE wasn't even a "thing" so while it was a struggle with them, it was a different kind of struggle. I hope you fins the combination that works for all of you so she maintains her health and you maintain your sanity. Peace, mama.

posted about 2 years ago
A MyFoodAllergyTeam Member said:

Oh and bone broth...lots and lots of bone broth!

posted almost 2 years ago
A MyFoodAllergyTeam Member said:

I've had EOE for the last 6 years. I am currently on naturopath medicine that really seems to help with my EOE. I'm currently taking slippery elm powder(once a day in the morning), throat coat tea (twice a day), probiotics (the highest amount-100 billion once a day), turmeric milk (once a day in dairy free milk), and rhizinate (licorice root - eat 2 tablets 20 minutes before each meal). Fermented food is also recommended, ie. sauerkraut

posted almost 2 years ago
A MyFoodAllergyTeam Member said:

@A MyFoodAllergyTeam Member sometimes I feel that with all the medical technology, it is just complicating life. We are taking it one day at a time and pray that she can get over some of her allergies. Started with immunotherapy with the hope it can at least help with some of the environmental allergies.

posted about 2 years ago
A MyFoodAllergyTeam Member said:

So glad I found somebody with EoE! Little M was diagnosed at 16 months and its been an up hill battle. Her allergies are just increasing and people just don't understand that its not just something she will out grow. We had our annual gastroscopy last week and are waiting for the histology results, so nervous. We can see that some days she is really struggling and it breaks my heart as she can't really understand what is wrong with her.
We tried the slurry with Little M, but she had a permanent candida infection so we decided to only follow a very strict diet. So far it works for us, but it is really hard some days as I have to always carry her own food and snacks where ever we go. She was also now placed on Nexium for GERD so I am hoping it will provide for relieve for her.

posted about 2 years ago
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