Anyone got this? Curious how you are managing.

Have a couple of close friends that have it. They see an allergist and also did an elimination diet to identify key allergens. Keeping those off the diet ongoing has proven successful for them.

Most of my peds patients do the dietary modification after a Immunocap test to identify potential food allergies. They also use budesonide nebulizer capsules that you drink to treat the esophagus directly with steroid.

Bumping this thread. I was scoped and diagnosed with EOE ~10 years ago and have just been on omeprazole daily since then with little improvement. Last year my mom had some minor cardiac issues that I pressed her on getting checked out. She agreed with the condition that I get checked out again regarding my EOE issues.

She held up her end of the deal, so I got scoped again in January and re-confirmed the diagnosis. I'm currently doing a number of things:

• Last fall I did the food allergy blood testing that confirmed that I am sensitive to all the standard EOE categories except for shellfish. Basically anything that isn't a meat, vegetable, or fruit lights up on the test.


• As KidDoc mentioned, I'm doing a course of budesonide mixed into some sweetner packets and drinking/swallosing it before bed to coat my esophagus.


• Using the allergy test mentioned above, I started the elimination diet last week. To say it is difficult is an understatement. I am literally only eating chicken, veggies, and fruit. I've found a few pre-packaged items that don't contain any prohibited ingredients, but for the most part, this diet change is a shock to my system. In related news, I'm down 3 lbs. since last week.


• Finally, I took my first Dupixent injection last night. It's a 1x/week shot that is supposed to supress the auto-immune eosinophilic response.

I guess I'm bumping this thread to see if anyone else has dealt (or is dealing) with this. The plan for the diet restrictions is for them to last 4-6 weeks before starting to reintroduce prohibited foods. My biggest concern/fear is that my sensitivities are going to be the same even after the diet and I'm going to be stuck eating chicken/veggies/fruit for the rest of my life. While I realize that would be a much healthier life, I'd like to be able to have dairy, wheat, and other "offending" items as options when I want. I'm planning to go see the Aggies at MMP this Friday and I've already had to resign myself to the fact that I'll likely only be having water while I'm there.

Any tips/insights would be greatly appreciated. I've told myself that I can do anything for 4-6 weeks to get this figured out, but I'm really struggling with the potential that this may be my "new normal".

YellAg2004 said:

---

Bumping this thread. I was scoped and diagnosed with EOE ~10 years ago and have just been on omeprazole daily since then with little improvement. Last year my mom had some minor cardiac issues that I pressed her on getting checked out. She agreed with the condition that I get checked out again regarding my EOE issues.

She held up her end of the deal, so I got scoped again in January and re-confirmed the diagnosis. I'm currently doing a number of things:

• Last fall I did the food allergy blood testing that confirmed that I am sensitive to all the standard EOE categories except for shellfish. Basically anything that isn't a meat, vegetable, or fruit lights up on the test.
• As KidDoc mentioned, I'm doing a course of budesonide mixed into some sweetner packets and drinking/swallosing it before bed to coat my esophagus.
• Using the allergy test mentioned above, I started the elimination diet last week. To say it is difficult is an understatement. I am literally only eating chicken, veggies, and fruit. I've found a few pre-packaged items that don't contain any prohibited ingredients, but for the most part, this diet change is a shock to my system. In related news, I'm down 3 lbs. since last week.
• Finally, I took my first Dupixent injection last night. It's a 1x/week shot that is supposed to supress the auto-immune eosinophilic response.

I guess I'm bumping this thread to see if anyone else has dealt (or is dealing) with this. The plan for the diet restrictions is for them to last 4-6 weeks before starting to reintroduce prohibited foods. My biggest concern/fear is that my sensitivities are going to be the same even after the diet and I'm going to be stuck eating chicken/veggies/fruit for the rest of my life. While I realize that would be a much healthier life, I'd like to be able to have dairy, wheat, and other "offending" items as options when I want. I'm planning to go see the Aggies at MMP this Friday and I've already had to resign myself to the fact that I'll likely only be having water while I'm there.

Any tips/insights would be greatly appreciated. I've told myself that I can do anything for 4-6 weeks to get this figured out, but I'm really struggling with the potential that this may be my "new normal".

---

Food allergy testing is notoriously difficult. Skin tests and blood tests can really only give you a starting point for what to try to do elimination followed by challenge. I wouldn't get too overly worked up if you are having trouble figuring it out - you can drive yourself bonkers trying.
I hope you have good results from Dupixent. I have a good number of patients on it for asthma and nasal polyps, and I can say I've seen some results that are nothing short of miraculous. Also, if you are just trying Dupixent, it might make it extra difficult to do food elimination and challenge. Too many variables changing at once. Good luck.

Thanks for the response. I've had the same concerns regarding changing too many things at once. When I asked the doctor how we would define/track "progress/improvement", her answer was pretty vague and concerning. Essentially she said that I will need to be scoped again in ~6 months to check progress. I'm fine with that as I've met my deductible for the year already, but that seems to only address the eosinophilic response side of the equation and not necessarily the trigger (food) side of things.

On the other hand, if the Dupixent addresses the response, I'm wondering if that would free me up from any dietary restrictions. When I asked that question, I was told that we can talk about that question after the elimination diet in hopes that we can better define my triggers so that I could just avoid those and not have to take the shot in perpetuity. If the triggers only end up being oddball things, I'll just avoid them. If dairy and gluten are triggers, well that's a different story...

YellAg2004, I wanted to bump this and check to see if you have seen improvement.

Anyone heard from YA2004 lately?

Dropping in to give an update.

In April my dad went in for a routine heart cath procedure that turned into needing immediately needing a triple bypass, during which there were complications that resulted in him being in the cardiac ICU for ~2 months followed by another month at a rehab facility. Because that wasn't stressful enough, my wife and I finally found a house in the neighborhood we were looking and moved forward with buying it and starting a small remodel of it. I share all of this to say that I'm not sure how I could have possibly stacked more crap into my life during the past few months along with the food elimination.

On the food elimination side, I stuck to the diet for about 8-10 weeks pretty religiously. I found a handful of foods and just ate those over and over and over and over and over...

What this did help me confirm is that I have a real issue with eating for comfort. Given the stressors listed above, I found myself eating almost a whole bag of potato chips simply because it was something I could control. This may be going too far down the pysch side of things, but it's the reality of the situation.

I had a follow-up with the nutritionist during which I again re-iterated my concern with how any progress would be measured since any sort of response to a food trigger was supposed to be being addressed by the Dupixent. She didn't have a good answer other than to tell me the same generic canned response which could be summarized into "look for GI discomfort". Shortly after this follow-up, I tried to start re-introducing "restricted" foods, but found that I had no reaction to any of the main ones I tried, including wheat and soy. Shortly after that I completely abandoned the diet restrictions fully and have noticed no "GI discomfort" or any other adverse reactions, which is pretty much cementing my concerns that the Dupixent is preventing any sort of reactions.

While the success of the Dupixent is encouraging, the numbers showing up on my explanation of benefits from Cigna each month show that the cost for 4 shots (1 month's worth) is over $7k. I've met my $5k deductible for this year, so I don't even have a copay for the remainder of the year, but I'm now concerned with what happens in January 2024. Is my new normal to expect to pay $5k out of pocket every January in order to stay on the Dupixent?


So to summarize, the diet modifications/food elimination I would consider completely inconclusive while I feel like the Dupixent has been pretty successful. I'm incredibly frustrated with how my doctor handled this whole sequence of events, so I'm considering trying to find another doctor to get another opinion before the end of the year. As my previous post stated, I have been on omeprazole daily for the last ~10 years, and I want to ultimately get off of it. I feel like I've now traded a drug with a $10 quarterly copay for a $7k/month set of injections. So while physically I may have made progress, overall I feel like I've taken somewhat of a step backwards.

Thanks for the response. What about side effects with the dupixent? The PPIs we're giving me headaches like crazy (pressure in front of head and sinuses)

I just started my elimination diet today. Breakfast already sucked

Have you had another scope since you started injections to see if your eosinophil count has lessened beyond upper levels of concern?

The first week of the Dupixent I had tender spots on my hands that were like ant bites without a head. Just little red spots that were a little tender to the touch, nothing major. Those went away after the first few days and haven't come back. That's the only side effect that I've noticed. Subsequent injections didn't cause any issues.

I have experienced an almost complete elimination of the "choking" episodes where food would feel like it was getting caught going down. That's what started this all in the first place 10 years ago. That leads me to believe that the Dupixent has likely stopped the eosinophilic response in my body since that's what I was told leads to the rough/scarring spots on my esophagus that causes the food to catch.

I haven't gone back for a follow-up scope, but it is on my to-do list before the end of the year.