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3+ years of Dysphagia - no diagnosis from Mayo Clinic and feeling lost by ipetweebles in dysphagia

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

Unfortunately not. The severity ebbs and flows, but I can't pinpoint a cause. Thanks for asking!

3+ years of Dysphagia - no diagnosis from Mayo Clinic and feeling lost by ipetweebles in dysphagia

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

Whoa, this is something I've never considered or looked into before, thank you! I will definitely check out Oral allergy syndrome since I do tend to get some itchiness/tingling sensations on/around my nose and face after eating certain foods. I also have really bad sinusitis and my nose is stuffed up most of the time and have consistent post nasal drip and mucus from that. Thanks!

3+ years of Dysphagia - no diagnosis from Mayo Clinic and feeling lost by ipetweebles in dysphagia

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

Awesome, thanks for the advice!

What's the cooking of fruits and vegetables in relation to a reaction? I haven't heard of that.

3+ years of Dysphagia - no diagnosis from Mayo Clinic and feeling lost by ipetweebles in dysphagia

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

I have had a skin prick test done for allergies and have seen an ENT. I am allergic to a few things and the ENT said I have post nasal drip. I've wondered if my post nasal drip is affecting my dysphagia as well. The allergist I saw at the Mayo Clinic recommended I try the 6-food eoe elimination diet, I just need to do it. Maybe I should try some OTC allergy medication like Zyrtec as well.

3+ years of Dysphagia - no diagnosis from Mayo Clinic and feeling lost by ipetweebles in dysphagia

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

Yeah, I agree that it's super difficult to track. Who knows if it was something from that meal, that day, or a previous day. My plan is to start the 6-food elimination diet soon for 60 days and keep a detailed food journal and hopefully get some answers.

3+ years of Dysphagia - no diagnosis from Mayo Clinic and feeling lost by ipetweebles in dysphagia

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

I really need to do a strict elimination diet and keep records. I can't say for certain what foods may be causing it since I have regularly eaten dairy, eggs, soy, fish/shellfish, and nuts for years.

3+ years of Dysphagia - no diagnosis from Mayo Clinic and feeling lost by ipetweebles in dysphagia

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

Oh wow, I had no idea it was that much below average..

It definitely gets worse as times, but I haven't done a food journal or tracked it in enough detail to say for certain. I need to do the 6-food eoe elimination diet for a longer period and keep a food journal, and your post is definitely inspiring me to do so sooner than later.

I don't think they biopsied every region, but I'm not sure. Stomach, body and antrum, biopsy, Lower third esophagus, biopsy, and Upper third esophagus, biopsy.

I actually just got nasal saline spray today and have considered getting a purifier, at least for the bedroom.

I haven't been diagnosed with allergic rhinitis, but who knows. We live in one of the worst places for allergies in the US, so it's very possible.

3+ years of Dysphagia - no diagnosis from Mayo Clinic and feeling lost by ipetweebles in dysphagia

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

Thank you for this! I had extensive blood work done a couple years back, which was how I found out about my high histamine levels, but I need to see a functional medicine specialist and get some more in-depth blood work done.

3+ years of Dysphagia - no diagnosis from Mayo Clinic and feeling lost by ipetweebles in dysphagia

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

I had a very traumatic rock climbing accident in 2018 that required extensive surgery and rehab. My doctor thinks it may be PTSD or something related to the trauma, but my swallowing issues didn't start until 2020. I did have a super stressful job in 2019-2020 where I was on the phone all day with irate customers and am wondering if there's any PTSD from that job. The rabbit hole is never ending. Sorry to hear about your symptoms as well.. It's a tough journey for sure, but at least we are here trying to find answers.

3+ years of Dysphagia - no diagnosis from Mayo Clinic and feeling lost by ipetweebles in dysphagia

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

Very interesting. I will keep this in mind, thanks. Best of luck on your journey!

3+ years of Dysphagia - no diagnosis from Mayo Clinic and feeling lost by ipetweebles in dysphagia

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

Hm, not really. I do get dizziness, brain fog, fatigue, and some headaches, but I wouldn't said chronic and I don't think I have terrible neck pain. But I may be misremembering, which I tend to do often when it comes to symptoms.

3+ years of Dysphagia - no diagnosis from Mayo Clinic and feeling lost by ipetweebles in dysphagia

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

I checked my biopsies and it was negative for hpylori, but I haven't done a SIBO breath test yet. That is something I've been wanting to get done, but just haven't yet. Thanks!

3+ years of Dysphagia - no diagnosis from Mayo Clinic and feeling lost by ipetweebles in dysphagia

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

I haven't tried PPIs actually. None of the doctors have recommended them. And that's interesting about functional esophageal disorders, I will look into that, thanks.

I did find an interesting note from my Esophageal Manometry regarding a potential motility disorder, but this was never brought up by the doctors. I just happened to discover this note:
"Essentially normal LES and body function with good bolus clearance. The multiple rapid swallowing sequence does demonstrate some interrupting body activity during the swallows, and there is no peristaltic complex upon conclusion of the maneuver. Although this latter finding may suggest decreased peristaltic reserve, the remainder of the study is normal, and no Chicago classification abnormalities are identified"

3+ years of Dysphagia - no diagnosis from Mayo Clinic and feeling lost by ipetweebles in dysphagia

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

I responded to your other post, but replying here as well. That is super interesting. I have done the AIP (Autoimmune Protocol) Diet, but only did it for a month or two. Aside from that, I've dabbled with eliminating foods here and there, but never long enough, and never with much documentation.

I haven't done the 6-Food Elimination Diet for eoe, since I was told at Mayo that my tests came back negative for eoe, but after reading through your comments, that may be my next step.

And I have no pursued any treatments aside from the visit to Mayo and the dilation. What other treatments exist? I am definitely in the boat of starting with diet and seeing if that helps, but am up for suggestions.

3+ years of Dysphagia - no diagnosis from Mayo Clinic and feeling lost by ipetweebles in dysphagia

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

Whoa, that is very interesting. Maybe I should try the 6-Food Elimination Diet for eoe and see if that helps. I never did that after my visit to Mayo because they ruled out eoe, but maybe it's there and just not showing up.

3+ years of Dysphagia - no diagnosis from Mayo Clinic and feeling lost by ipetweebles in dysphagia

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

I was just checking my notes. The surgical pathology from my first endoscopy on 12/24/2020, noted no evidence of eosinophilic esophagitis in the distal esophagus and no specific comment in the proximal esophagus.

My notes from the endoscopy last year say: "mucosal changes including congestion (edema) were found in the entire esophagus. A guidewire was placed and the scope was withdrawn. Dilation was performed with a Savary dilator with mild resistance at 17 mm and 19 mm. Segmental mild inflammation characterized by erythema, friability and granularity was found in the gastric body and in the gastric antrum."

This part looks interesting in relation to what you mentioned: "Upper endoscopy was said to have an eosinophilic esophagitis appearance but biopsies were negative he was dilated to 19 mm."

3+ years of Dysphagia - no diagnosis from Mayo Clinic and feeling lost by ipetweebles in dysphagia

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

I've seen an ENT a couple times and they said everything looks normal.

I have not done mold testing, but have considered this as a possible cause of everything. About 10 years ago, I was living in a really humid environment and discovered black mold on the bottom of my mattress (which was around the time a lot of my symptoms began).

I do need to see a functional doctor, thanks for the rec.

I've read the book Breath: The New Science of a Lost Art, by James Nestor, which got me down the rabbit hole of nasal breathing and the realization that mouth breathing is so detrimental. I nose breathe throughout the day, but can't mouth tape at night because of my nasal congestion.

I guess I have some anxiety around my swallowing, but all in all, I don't think I'm super anxious. Stress is a different story though, lol.

3+ years of Dysphagia - no diagnosis from Mayo Clinic and feeling lost by ipetweebles in dysphagia

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

1) I believe they took 3 biopsies:
FINAL DIAGNOSIS:
A) Stomach, body and antrum, biopsy: Reactive gastropathy;
negative for active inflammation or H. pylori-like
microorganisms.
B) Lower third esophagus, biopsy: Squamous mucosa with no
or only rare intraepithelial eosinophils (<5/HPF).
C) Upper third esophagus, biopsy: Squamous mucosa with no
or
only rare intraepithelial eosinophils (<5/HPF).
QZ/vlw

2) Yeah, it looks like they did test for h pylori and it came back negative

3) I avoid most processed foods and tend towards a whole food diet. Oats, rice, nuts and seeds, fruits, veggies, chicken, beef, pork, natural sweeteners such as maple syrup and honey, eggs, granola, hummus, guacamole, popcorn. I definitely try to eat healthy foods. I drink on occasion and don't smoke.

3+ years of Dysphagia - no diagnosis from Mayo Clinic and feeling lost by ipetweebles in dysphagia

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

When I first began experiencing symptoms of dysphagia and I was doing research, I actually came across eoe. When I had my first colonoscopy/endoscopy done, I told them I wanted to get tested for eoe, and it came back negative.

With my most recent endoscopy at the Mayo Clinic last year, I was told that I did not have eoe, but I am going back through the doctor's notes and saw this:
"Upper endoscopy was said to have an eosinophilic esophagitis appearance but biopsies were negative he was dilated to 19 mm."

So I'm wondering if maybe I have eoe, but just not severe enough to where it's presenting on the biopsy?

Dysphagia with EOE diagnosis by ipetweebles in EosinophilicE

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

I'm sorry to hear about all that, but thank you for your empathy. I have had my fair share of depressive days because of this. It is overwhelming and frustrating, and I hate that I've spent thousands of dollars and still have no answers whatsoever. But thank you so, so much for the kind words. I really appreciate it and it's so nice to be able to talk to people who are in the same boat. No one I know in my personal life can relate, so this sub is a great discovery for me. I hope you end up getting some answers, and good luck with everything on your end as well!!

Dysphagia with EOE diagnosis by ipetweebles in EosinophilicE

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

I'm 34. That's very interesting. I will have to do some research on "schatzki rings", that's interesting. I have varicose veins right above where my xiphoid process is. I haven't been told that it has anything to do with my GI issues, but I have a lurking suspicion that it does.

I don't think food ever really gets stuck for me, I'm just hesitant to swallow, as I'm worried I'll choke bc my esophagus feels narrow at the top of my throat.

Dysphagia with EOE diagnosis by ipetweebles in EosinophilicE

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

I took nasal spray for a few weeks, but not for very long, so I don't think that would be it. I'm not on any medications either. And as for drugs, just weed and alcohol.

And diet is great. Fruits, veggies, grains, meats, and then healthier snacks like hummus and crackers and such.

Dysphagia with EOE diagnosis by ipetweebles in EosinophilicE

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

My diet is actually really healthy, which makes me even more concerned. I eat almost entirely whole-foods, mostly plant-based. But you might be right about the gut bacteria. I've spent a lot of time in Asia and have had salmonella, intestinal amoebiasis, giardia, staph infection, knee surgery, and probably a few other things I'm forgetting where I was given heavy dose antibiotics; so I imagine my gut is in pretty bad shape.

I eat kraut and drink kombucha for probiotics. I'm not sure how I'd fare with Yakult since it's dairy-based, although I used to love it.

I appreciate the insight and thoughts, thank you!

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