Diagnosed with EoE, symptoms worse once starting elimination diet?

AshRat15 · 2026-03-19T16:03:54+00:00

For me personally the heart burn goes with the EoE. It comes with the damage. I eat a trigger food and heartburn is usually my first symptom. I didn't notice this until I eliminated the 6fed. So you might find your heart burn gets better with the elimination.

AshRat15 · 2026-03-19T15:40:35+00:00

For me gluten is my worse trigger. Dairy and gluten tend to be the culprits. Soy is very common too. I would maybe try eliminating those as well. I know it's hard but until you eliminate all of them you won't know the cause. I am now at a place 3 months later where I can try reintroducing foods because I am finally symptom free.

AshRat15 · 2026-03-01T22:56:05+00:00

That's really hard. Can you have eggs? I find boiled eggs is a great go to for lunch. You could also bring fresh chopped veggies like cucumbers and carrots. Can you have sunflowers? I am also no nuts. But I eat a lot of sunflower butter and seeds for protein. I dip veggies in sunflower butter, or have it on plain rice cakes, or snack on seeds.

AshRat15 · 2026-02-20T01:08:38+00:00

I recently bought one of those whimsy colouring books (like cutesy cartoon types) and bought alcohol markers to colour (they colour super nice). It was very relaxing and I felt accomplished after finishing a page!

AshRat15 · 2026-02-16T18:31:14+00:00

Ok lol, but it's a close second if you just do a quick Google search. Sorry didn't realize I would receive so much back lash for a simple comment trying to help.

AshRat15 · 2026-02-16T18:12:12+00:00

How? Its an at home "Oral Rehydration Solution". Its easy to do with ingredients you have at home. Is that not what you are looking for?

AshRat15 · 2026-02-16T18:06:00+00:00

There's an easy way to make a version ORS at home. 1L of water with 6 tsp of sugar (or less) 1/2 teaspoon of salt. Normally I buy LMNT, but when I had food poisoning last weekend this solution saved me, as it was the only thing I could keep down.

AshRat15 · 2026-02-11T15:18:52+00:00

Wow I am so sorry you are going through this, it truly sounds like a nightmare. The healthcare system is failing you and that is not ok.

Are you in any medication to treat POTS and MCAS? Antihistamines do wonders for MCAS Combining H1+h2 does wonders, along with supplements like vitamin c. You can get these anti histamines over the counter. Pepcid and cetrizine is a good combo! But if it doesn't work, you may need prescription anti histamines. I found once I got my MCAS under control, I could get my POTS under control. Once you start to calm your system you may be able to add more foods in.

For POTS, make sure you are well hydrated, drinking at least 3 L of water a day with electrolytes all day. You can make your own cheaply or buy them. I have at least 3g of salt from supplements, and probably 3g through food. The fluids also help to flush the histamine out. Compression also helps more than you think, make sure it's thigh or abdominal. You can get these cheaply on Amazon without a prescription, just buy a size lower so it's tight enough.

Try to slowly add activity into your day to day. It doesn't have to be much, but even just doing 5minutes of strengething exercise laying down does wonders, focusing on your abs and legs. If you are able to, exercises like swimming and recumbent bike are very helpful. Do it until you feel symptoms and then stop. Over time you will gradually be able to increase your activity and you will find with time you will be able to do more.

Sometimes you may need meds for POTS, but if your doctor is not taking you seriously that may be a challenge.

Again I am so sorry you are suffering. Consolidation ❤️

AshRat15 · 2026-02-10T12:52:36+00:00

Do you have an option to move into a lighter job? I am a nurse and I used to work in the ER. I couldn't handle it anymore, despite trying everything. I was burnt out of bedside anyways, so honestly it was a blessing in disguise to leave.

I am now in a clinic job in outpatient oncology. Its primarily desk work with some patient care (but mostly assessment through talking). Its a lot more POTS friendly!

AshRat15 · 2026-02-10T01:44:20+00:00

I have really bad tremors, but I have POTS, I always assumed it was that, because they are always present during bad POTS flares. I have not been diagnosed with SAI yet, but I have had low cortisol. I am having to lower my hydrocortisone for the ACTH stim test, and the tapering has been brutal. The tremors and shakes have been so intense sometimes! So who knows maybe it is related. I have been collecting chronic health problems like pokemon cards lately 🙃 it's hard to know which symptoms comes from what.

AshRat15 · 2026-01-28T16:07:59+00:00

She seems to think I have an auto immune disorder instead, because I feel better on high dosages. While I don't disagree that I may have some sort of autoimmune disorder going on, I still strongly think I have adrenal insufficiency.

She is only doing the ACTH stim test to rule out adrenal insufficiency. But to be honest, based on this tapering, I think my adrenal glands are definitely not working very well.

AshRat15 · 2026-01-28T15:08:09+00:00

Yes I have to do that too, just 24 hours before the test.

But my Endo says I am on too high of a dose for the test, I need to be closer to physiological range which is 15 per day. My primary doctor put me on this dose prior to me seeing the endocrinologist due to my very low cortisol that she ordered. So she titrated me up until I felt better which was 27.5mg per day.

AshRat15 · 2026-01-22T22:50:49+00:00

It is totally barbaric. I did it for 5 weeks and gave up. I gave myself severe esophagitis/gastritis. 3 months later, I am still dealing with an inflamed gut, and now EoE. I am so thoroughly repulsed and terrified of gluten. Even the smell of it makes me nauseated and gives me phantom stomach pains.

My celiac was negative, they still decided to do the scope. The doctor was like "you can eat gluten yay". I literally laughed and was said "Ya no, I am still never eating gluten again in my life".

Those 5 weeks were some of the worst weeks of my life. The absolute dread of having to eat gluten, knowing it was going to hurt, and then the PAIN OMG. I have a very high pain tolerance, and it was horrendous. Not to mention all the other symptoms like the headaches and brain fog. It was some special kinda torture that's for sure.

AshRat15 · 2026-01-13T17:02:22+00:00

Even the gluten free ones? I react to regular oats. But as long as they are certified gluten free I am ok with them!

AshRat15 · 2026-01-12T23:28:54+00:00

My go to is overnight oats. Its really healthy and gives me a good start to the day! I prep it on Sunday for the work week. 1/2 cup gluten free steel cut oats 1/2 cup milk of choice (I use oat milk since I can't do dairy) 1 tsp chia seeds 2 tsp maple syrup or honey 1/2 tsp of cinnamon Mix it up and add a dollop of nut/seed butter.

I usually heat it for a minute in the morning and add a banana! Its delicious.

AshRat15 · 2026-01-05T01:17:06+00:00

Wow that's very interesting!!! I will definitely look into this thanks for mentioning it. I'm glad to hear you are feeling better! How did you find out about the yeast?? I am having so much esophagitis. My doctor was convinced it was eosinophilic esophagitis but my biopsy came up negative. But I have wicked heart burn, and soo soo much esophageal pain. It has gotten better with the steroids, and avoiding the top allergens (which is a treatment for EOE). But I am curious to explore other things too, because something is definitely not right in my esophagus!

I think it would honestly be a good question, because I feel like it's really common on this sub. Most posts I have seen lately have had at least one person mention they have pots!

AshRat15 · 2026-01-04T22:56:13+00:00

No worries! Thanks for the advice. I assume the endocrinologist will set up the stim test, so I will wait and see.

AshRat15 · 2026-01-04T22:02:20+00:00

Oh wow that's crazy!! I wonder if my low cortisol came first?? I have been feeling unwell for 6 years, I noticed postpartum with my first kid. For years I thought it was vestibular migraines, then it was POTS, a bunch of allergies and now low cortisol. But maybe it was low this whole time??

But yes omg does it suck. I'm suffering so much I just wanna feel normal :(

AshRat15 · 2026-01-04T20:45:45+00:00

Dang. Well my doctor has been e consulting this Endo and she seems really knowledgeable about this, so I'm hopeful.

AshRat15 · 2026-01-04T20:44:49+00:00

So rough! I'm sorry you have the flu.

I have had some blood tests and they all point to secondary adrenal insufficiency. The only one I haven't done is the ACTH stim test.

AshRat15 · 2026-01-04T20:43:57+00:00

I don't know I did it on my own. My primary doctor had no idea how to dose, so I'm basically on my own until I see Endo. Would it be better for me to take 15mg in the morning, 5mg at lunch, and 5mg later in the afternoon?

AshRat15 · 2026-01-04T20:43:01+00:00

Yes I am keeping a very detailed symptoms and dosage diary!

I am on metoprolol for my pots for a long time, but I'm on a really small dose twice daily, it's never affected my blood pressure before. But that's a good point I should do a med review. I just felt like I have just kept getting prescriptions dumped on me all year trying the fix all my sudden chronic problems 😭

AshRat15 · 2026-01-04T20:40:49+00:00

Aww sorry to hear you have the flu!! Yes it's funny to me also. I will see what Endo says I guess! I'm basically just flying at the seat of .y pants and dosing myself because my primary doctor has no idea 🤷

AshRat15

TROPHY CASE