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Struggling with Eosinophilic Esophagitis

louie1234
Jun 15, 2016 • 7:56 PM
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Hello all, thank you in advance for taking the time to read my post. I have had EoE for the past 6 years, I was diagnosed with it at age 27. It was confirmed from an upper GI and I went to an allergist after and was told I have a soy, cherry, hopps, and almond allergy. I try my best to avoid these allergens but soy is the hardest. It is in almost everything these days and i feel the effects of it almost immediately. I tend to get flare ups that vary in severity and im currently going through a bad one that has prompted me to make this post. Im curious to others symptoms.

I get the acid reflux but in addition i get chest pains that are very painful. They are in the center of my chest and also on the left side usually by my armpit. In addition i get left arm pressure that moves around. I feel pressure in my bicep and the back of my tricep and sometimes shoulder. After i eat the symptoms get worse.

The lesser attacks i can usually make go away with pepcid or tums. I have pantapropazole that I use for longer term relief (although i don't like being on medicine.)

I had my heart checked when i was 27 prior to going to the GI as i thought it was heart related. My question is, does anyone else suffer with bad chest pains and arm pressure/pain? Im currently on week 2 with little to no relief from symptoms. I can swallow food but i have the feeling in my throat like something is stuck or backed up. It can be miserable dealing with EoE. Any help or suggestions would be greatly appreciated!

Thank you for your time

Lou

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Andrean1
Jun 15, 2016 • 10:46 PM

What are the doctors plans to treat your EoE? Has he/she talked about a top 8 food elimination diet or budesonide?

I get reflux but not pain like that with it. My reflux is unrelated to EoE (I'm on budesonide). I have a sensitive stomach lining

and have to avoid acidic foods - my reflux returns when I have to much of these.

Are you able to strictly avoid soy? no ifs, ands, or buts?

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2grmomma
Jun 16, 2016 • 12:19 AM

My 8 year old gets these same symptoms with pains in his legs too. His GI dr says she has never heard of an EOE patient having these pains in anything other than the stomach.

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goldiyogi
Jun 16, 2016 • 12:54 AM

I know that pain. I get it in my chest and it goes through to my back, and then it rises. I don't usually get it on the left side like you do. Sometimes it wakes me up in the middle of the night, and sometimes I have it during the day. I had a good period of time, the last couple of months, when it was rare. I've woken up with it in the last two weeks. It's awful. I feel for you. I was wondering if other people had this pain, too.

I was diagnosed with EoE this past November/December. It took me a good several months to do the full and complete elimination diet, and I'm on it right now. I don't think it's working entirely....and I'm scheduled for another endoscopy at the very end of it. Prior to the elimination diet I did, and am still sticking to, an ayurvedic diet -- the one thing that is different is that I've cut out the ghee (dairy).

When I wake up with the pain there are several things I take or do or that work for me. I've been using Acid Ease made by enzymatics. I empty out the capsule into a little water (because I'm unable to swallow tablets) and I drink that and I add another ayurvedic remedy made of calcium carbonate. This gets rid the pain almost immediately (well, standing upright does too, even though I'm sleeping at a 45 angle anyway). I've found this combination will work but occasionally the pain comes back. What really works is to have a 1/4 teaspoon of baking soda in some lukewarm water and then sip it. (Check with your doctor about this. ) The baking soda neutralizes the acid immediately and I've found it settles things quickly and it doesn't come back right away. Also good -- taking aloe vera regularly. I use the full leaf and fillet it. There are good YouTube videos on how to fillet an aloe leaf. Take one or two pieces daily.

Please see your doctor and let us know how it goes. I let this pain go for awhile and lived and suffered with it, and then I found I that I had some Barrett's esophagus. I can't get this go any longer and so when or if it comes up, I do something about it right away. It's better do things in advance: like, figuring out what foods you can and cannot eat, don't eat for 3 hours before you sleep, avoid caffeine and alcohol and foods that are acidic (like tomatoes or even sugar). By the way, this intense pain seems to get worse with I'm on PPI's and I wake up with pain more often. For whatever reason they just don't work for me. I hope you can find out the source of what's going on for you. You're young! Given the pain that you're having, and the left side aspect, push for more investigation of your heart. It's too close (anatomically) to avoid and the symptoms sound alarming. I wonder if it could also be that your diaphragm is contracting/spasming...? Keep getting it checked out.

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louie1234
Jun 16, 2016 • 1:21 AM

Thank you for all the replies! It's comforting to speak to people who understand your pain. I'm sorry for everyone that experiences these pains as well.

The gi dr seemed disinterested once he told me I have eoe and really pushed on seeing an allergist. My pain is almost always triggered by soy. It can come on quickly and sometimes it comes on the day after. usually the flare ups don't last longer than a day or 2. This time it has been much longer.

I agree about ppi's not working. I'm on day 4 and the side effects are making me feel awful

I too sleep with pillows propping me up. Laying down is he worst and always causes pains

I will try some of your suggestions and see if they work for me

I think a lot of Drs do not understand eoe and as a result do not know how to treat it effectively. I do know it's been years of pain, sitting up in bed at night and a lot of worrying!

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louie1234
Jun 16, 2016 • 1:28 AM
In reply to louie1234's comment

Oh and one more thing I forgot to mention. I burp constantly. All day and all night. It's terrible. Do you burp a lot too?

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goldiyogi
Jun 16, 2016 • 1:56 AM

No, I don't burp much anymore. Burping all the time isn't great, but I think you know that. If I take too many swallows (drinking water) or if I eat something that my system doesn't seem to like there's a sense that food will get kind of stuck a little. And then I have kind of hiccup - a big one. Sometimes I'll have more hiccups -- although in the past week or so the hiccups have been less. No burps, but there are times -- too many - when my esophagus will gurgle or make funny noises all the way up into my throat. In the past week there's been a lot of mucus forming after I eat and there's a feeling that I need to clear my throat. This is new and it could be the remnants of a cold (or I hope that's the case.)

On the burping: when I was on certain PPI's I felt the need to burp, but couldn't. But overall, I don't burp all that much. I used to be able to burp to reduce the pain that would come up and then rise from my center. Now I don't burp. Another remedy to the intense feeling or pain -- sipping cool water. It's worth trying. Also, be careful about certain positions and exercise that can aggravate and cause strain on the diaphragm, especially movements where the energy 'rises.' Keep the energy going down through the legs by visualizing it moving down. Pillows -- I have a set up with 6 or 7 pillows and then another under my knees. I've been sleeping like this for months. I'm wondering if this will ever change. I hope so.

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goldiyogi
Jun 16, 2016 • 3:16 AM

quick addition: I don't know much about using baking soda but I do know you don't want to use it after you've eaten a lot of food and I think it's something you have to be very careful with - as pressure can build up. I might take a quarter of a teaspoon diluted in a glass of water and maybe I'll drink of half of the glass. I will wait a couple of hours after I eat to do this, or longer. For me, this helps. I find I only have to do this every couple of weeks. When in doubt, check with your doctor.

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louie1234
Jun 16, 2016 • 3:02 PM

What i would like to know is what is the solution? The Drs say we have EoE but does it ever go away? Do we need to go for upper endoscopys every couple years? I looked into barrets esopagus and that sounds scary. Its all very frustrating and reptitive. Have a flare up, suffer in silence til it subsides, and then wait for the next flare up and repeat

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goldiyogi
Jun 16, 2016 • 9:33 PM

I dunno, Lou, I'm wondering about all this, too. I'm going for a follow-up endoscopy next week -- to check on the EoE's as well as the Barrett's -- I'm hoping the first sign of Barrett's was just a fluke (I'm hopeful). I'm hopeful the EoE's are reduced, too. The EoE's is a royal pain in the neck, but I probably could live with it. I can't believe sometimes just how much food I've cut out, but it's all in an attempt to just go easy on my system and be gentle. I have a feeing I'm not relaxing all that well and my attitude is a little 'off' but then, being worried and concerned a great deal of the time doesn't help. When in doubt, I just look at what I can eat - good vegetables and clean food and rice - but I know I've become a terrible bore sometimes.

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louie1234
Jun 16, 2016 • 10:48 PM

It amazes me how much food can affect your system, body and attitude. I struggle with it everyday. I made an appointment with my gi today for a follow up visit but couldn't get an appointment until July. I'm sure they will do another scope to see where I'm at. I'm hoping for the best for you! Let me know how your scope goes. You opened my eyes to barrets and that's a big reason why I made the appointment so thank you!

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CheckeredFlag
Jun 17, 2016 • 4:41 AM

I've been suffering from esophageal spasms for about 15 years. They would happen about once every 6 months or so but began to increase in frequency to nearly once every 2-3 weeks. The pain feels like a piece of bread being stuck in my throat, though I'd have nothing to eat. It would often happen late at night or early in the morning - usually on an empty stomach. The pain could become very intense and sometimes lasting for 12 hours. Docs assumed it was cardiac until a year of testing ruled it out. Finally after being recommended to an allergist, she finally diagnosed me with EoE which was likely the cause of my spasms. Biopsies resulted in eosinophilic levels of up to 150 per high power field. I never suffered from reflux discomfort nor difficulty swallowing from allergic reactions as is common with EoE.

My allergist put me on fluticasone orally and nasally as well as omeprazole for reflux. After a year of treatment, my spasms slowly diminished in frequency to the point of being eliminated altogether with my last spasm having been over a year ago! My last biopsy was eosinophilic free, strongly correlating my EoE as indeed being the cause of my esophageal spasms.

For the spasm attacks, I've tried nitroglycerin and hyoscyamine with limited results. They would sometimes be effective, but usually the effect was only temporary or required high doses for any effect. My allergist has since prescribed diltiazem which was effective in stopping the spasm though I've only needed to take it once.

It seems that esophageal spasms are rare among EoE patients, but a very real and agonizing possibility.

Hope this helps.

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goldiyogi
Jun 17, 2016 • 10:00 AM

Oh my, you've had it too. Did you or your allergist ever find out what you were or are allergic to? I'm still at the decreasing stage of going from 1 or 2 times a day to now once, maybe twice, every 2-3 weeks (esophageal spasms). It's good to hear that the EoE's can go down and the esophageal spasms can stop. Congratulations!

Meanwhile with the elimination diet and sticking to a very simple gentle diet - one that's pretty gentle and easily digestible -- I've actually managed to gained weight. This is a good thing.

Lou, I'll let you know how the scope goes.

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louie1234
Jun 17, 2016 • 8:10 PM

Today has been a bad day for me again with my ongoing flare up. I have burning sensation in my upper stomach/lower chest and a constant pain in my left shoulder. It got alot worse after lunch. Have you experienced long term shoulder pain? It seems to travel around my arm and shoulder

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goldiyogi
Jun 17, 2016 • 10:07 PM

When I've had shoulder pain it's related to something else. With your shoulder pain, I don't know, but it may be time to seek out a doctor sooner than later or head to urgent care to check out your heart. Sorry you're not feeling well.

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goldiyogi
Jun 17, 2016 • 10:36 PM

Lou, check in again and let us know how you're doing. Don't let the pain go or continue. If it's reflux you don't want it to continue. If it's something else, you don't want to let it continue either. Do you know what might have triggered the episode?

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