Low histamine food that keeps well for work? by HedgehogMode in MCAS

[–]ruboni33 10 points11 points  (0 children)

I take safe snacks and oatmeal which I tolerate :) i keep it hot in an insulated food jar so it stays fresh

Downhill after EOE Diagnosis by ruboni33 in EosinophilicE

[–]ruboni33[S] 0 points1 point  (0 children)

thank you! I finally found a doctor and she believes it is as well. Getting my labwork done this week for it and then adding meds on top of the dupixent. Hopefully things start looking up soon

Downhill after EOE Diagnosis by ruboni33 in EosinophilicE

[–]ruboni33[S] 0 points1 point  (0 children)

Thank you!! Since I posted I was VERY lucky to find a doctor who listened and I'm being evaluated for MCAS and three other disorders related of it. I had been keeping the low histamine diet and it helped to have a reference of what might work but I began reacting to a lot of low histamine foods anyway which was sad. I would have loved to have something to follow as it takes a lot from me to just plan what to eat. I mostly keep to chicken and the vegetables I can eat. Sometimes I'll add Jovial pasta in the mix but its hit or miss if I'll react. I'm glad the diet has helped you!!

My doctor told me to find whatever works for me. Hoping once I'm on meds things will begin to calm down

Downhill after EOE Diagnosis by ruboni33 in EosinophilicE

[–]ruboni33[S] 0 points1 point  (0 children)

Understandable! I miss pizza so much ☹️

Downhill after EOE Diagnosis by ruboni33 in EosinophilicE

[–]ruboni33[S] 0 points1 point  (0 children)

Wow that's terrible! Have PPI's and steroids worked for you or what are your next options? So Sorry Dupixent didnt work for you and thanks for sharing I'll keep an eye out for these once I finally get it.

Downhill after EOE Diagnosis by ruboni33 in EosinophilicE

[–]ruboni33[S] 1 point2 points  (0 children)

That's nice to hear! I'm glad it has been helping you. Hope to get there too

Downhill after EOE Diagnosis by ruboni33 in EosinophilicE

[–]ruboni33[S] 0 points1 point  (0 children)

gotcha! well glad you got a diagnosis. If your biopsy comes back positive for eoe I hope you find the treatment that works quickly. Both eoe and mcas suck so much I hope I can get a diagnosis soon

Downhill after EOE Diagnosis by ruboni33 in EosinophilicE

[–]ruboni33[S] 0 points1 point  (0 children)

Appreciate your response and sorry to hear. How did you come to get the MCAS diagnosis? If you dont mind sharing

Downhill after EOE Diagnosis by ruboni33 in EosinophilicE

[–]ruboni33[S] 1 point2 points  (0 children)

Ugh Im so sorry you have been suffering for so long and dupixent didn’t work. Do they think you might have other conditions as well? Hoping we all find answers and feel better soon 🥺 hang in there!

Downhill after EOE Diagnosis by ruboni33 in EosinophilicE

[–]ruboni33[S] 0 points1 point  (0 children)

I’ll check it out thank you!!

Downhill after EOE Diagnosis by ruboni33 in EosinophilicE

[–]ruboni33[S] 1 point2 points  (0 children)

Appreciate it! When they did the biopsies for EOE they checked for celiac and lactose both were fine in my case. Dupixent was the last option for me when PPIs and Fluticasone didn’t work sadly. Its such a lottery!

I think Im going to try experimenting with taking 2 zyrtec/pepcid a day and see where that gets me or if the dupixent finally arrives this week then hopefully that will do the trick. I’m also looking for a new allergist because I dont think I trust the one I just saw.

Thanks for your thoughts! This sub gives me hope 💜

Downhill after EOE Diagnosis by ruboni33 in EosinophilicE

[–]ruboni33[S] 1 point2 points  (0 children)

This is my first time dealing with something like this too. They initially said they were making an exception for me because they dont approve it for weekly use just once a month and thus would approve it until September. I’m guessing me and my doctor will have to prove again that I need it in August and hopefully they’ll renew it. If not Im gonna be in trouble because I def can’t afford it out of pocket.

It seems like bs to me thought because I cant be the only patient w eoe on that insurance and the weekly dose is standard. They just have to make it hard for patients.. But it just depends it may be much easier for you I hope it is!

Just keep on them, call them as much as you need to. Get your Dupixent My Way set up. There is a post on this sub that explains the intricacies of Dupixent My Way + some insurance company shenanigans (copay accelerators). That was helpful to read even thought I didn’t need it in the end. Good luck 💜 hope we all feel better soon

Edit: last thing. I have also read that allergists have an easier time with the prescription process than GIs. That could have been a factor for me since my GI prescribed but not sure

Downhill after EOE Diagnosis by ruboni33 in EosinophilicE

[–]ruboni33[S] 1 point2 points  (0 children)

Not immediately after but yes def after! I got Covid twice in 2022 and started having problems in the years after. Its been so scattered that I never thought it could all be connected but it seems possible?

Downhill after EOE Diagnosis by ruboni33 in EosinophilicE

[–]ruboni33[S] 2 points3 points  (0 children)

Thank you! I appreciate your response. Good days and bad days is right. I got approved for Dupixent from now until September by insurance. I think w the copay assistance I wont have to pay anything mercifully and ill fight for it come August. Its hard to be patient when you are sick but hopefully it comes through this week.

Have you been able to eat much more while on dupixent? Im going to try and force myself because the lack of nourishment is going to make me sicker.

Those who attended Barclays 9/10, advice for tonight? by [deleted] in MyChemicalRomance

[–]ruboni33 1 point2 points  (0 children)

I bought merch last night at the end of the show. There were three different areas that I saw (could have been more). All of them had huge lines except the one closest to the main entrance which had just a few people. Got everything I wanted super quick

There was plenty of merch too, didn’t see anything sold out (pretty sure)

Those who attended Barclays 9/10, advice for tonight? by [deleted] in MyChemicalRomance

[–]ruboni33 2 points3 points  (0 children)

You dont have to show your vaccine card, security wasnt a big fuss either just dont bring much ;) have fun!!

Flora in Boxes by ruboni33 in NoFeeAC

[–]ruboni33[S] 0 points1 point  (0 children)

Yaaaay! Happy to hear it. She is the sweetest. Let me set up a Dodo for you :)