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Eosinophilic Esophagitis (EoE) - Help


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Old 07-02-2017, 05:15 PM   #1
hbguy1
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Eosinophilic Esophagitis (EoE) - Help

Hello,

I was recently diagnosed with Eosinophilic Esophagitis (EoE) after a biopsy was done on a small piece of my esophagus. I was noticing food getting stuck in my throat 2-3 times a month -- mainly meat and bread, which prompted me to goto the doctor and get the endoscopy done.

I have been a fast eater for my entire life and this was mainly occurring for a few months (between December 2016 and February 2017). After a few embarrassing incidents in which I regurgitated, I ended up paying very close attention to chewing food thoroughly before swallowing. I felt that my problem had mostly gone away by this and didn't really feel that I was affected as much anymore.

However, since being diagnosed last week, I no longer have the same appetite for food. Worry and anxiety has got the best of me and I am now extremely cautious about chewing and swallowing. I now chew even more than I was before but I'm also more anxious and nervous about the long term effects of this disease because I was told it gets worse in most people.

Just after I thought I was "in the clear", a dark cloud has come over me after the diagnosis and I worry about having to go on a liquid diet in the future.

My doctor recommends that I take a pill every day (Tecta 40 mg) which is used to treat Acid Reflux. He said the scientific community doesn't know why it helps with EoE, but it does and that is the recommended approach. The part that I don't like: he wants me to take the pill everyday for life.

I told him that I wasn't choking on food anymore due to my change in eating habits and we agreed that I wouldn't start the medication until I felt that food was getting stuck again.

My questions can be found below:

- I read that EoE is a food allergy but my doctor said it is only a food allergy in infants. After my own research, it seems that it is a food allergy in everyone so I don't know why he would say that. Before starting medication, wouldn't it be best if I saw a food allergy specialist to determine what I am allergic to? I could then avoid those foods all together.

- Isn't there a better solution than being on medication for life? I'm a 34 y.o male and I have never been on medication for an extended period. My doctor said hardly anyone gets side effects from Tecta, but when I do my own research, I am not convinced about that. I also worry about the long term/unknown consequences of being on Tecta for life.

- How do they know I have EoE instead of Acid Reflux? I read that Acid Reflux also produces eosinophils in the esophagus. The only symptom that I have is difficulty swallowing certain foods.

- Are there other treatment options available? What do you recommend to help me manage this?

Thank you.

Last edited by hbguy1; 07-02-2017 at 05:39 PM.

 
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Old 07-02-2017, 07:38 PM   #2
Titchou
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Re: Eosinophilic Esophagitis (EoE) - Help

If your doctor isn't an allergist, then yes you should see one for testing. Be sure to have the skin scratch test rather than the blood test as it's more specific.

 
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Old 07-05-2017, 12:09 PM   #3
hbguy1
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Re: Eosinophilic Esophagitis (EoE) - Help

Thanks for the reply. Yes I will be seeing an allergist.

I want to add that before having the biopsy done, I was not put on any medications.

Could it be possible that I have some form of acid reflux instead?

Last edited by Administrator; 07-05-2017 at 02:40 PM.

 
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Old 07-05-2017, 07:40 PM   #4
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Re: Eosinophilic Esophagitis (EoE) - Help

Of course it is possible...and you probably need to investigate that as well.

 
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Old 07-06-2017, 01:04 AM   #5
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Re: Eosinophilic Esophagitis (EoE) - Help

I don't know anything about EoE or Tecta

I do have nightly acid reflux which is controlled by a raised head of the bed a low dose PPI and Gaviscon Advance liquid. I don't really have heartburn in the day. Just reflux at night and if bending down, when weeding the garden for example...so it seems postural to me

I don't think you said what the endoscopy revealed?

I haven't thought of it as an allergy but I too get the choking feeling with aspirin and chocolate (which I should be avoiding with reflux)

Sometimes my own saliva goes down the wrong way causing coughing fits. And 3 times food has gone down the wrong way in a very scary way (twice it felt life threatening) Each time I have been eating sweets
I thought as I must have a lax LES Spincter which lets acid/bile up maybe the valve at my throat is faulty too
My Sister and Daughter have the throat thing to a lesser extent, and my Mum had it bad. She called it her 'funny throttle'. She did live to her mid eighties though
I have mentioned it at the Doctors, but not received much feedback

So like you I chew thoroughly, and am keeping off sweets
I know how scary it is

If your endoscopy had revealed reflux damage you'd have been offered a PPI I think
Though if in the early stages of relux no damage may have been evident

It's understandable to not like taking medications every day. But I am on blood pressure and cholesterol lowering medication every day for life and am glad about that as it reduces the risk of heart attack/strokes

Try not to worry....it makes everything worse

Edited to add I looked up Tecta...it IS a PPI (Pantoprazole)

For anyone who has to be on a PPI long term it makes sense to supplement with calcium magnesium and a multi vit as PPI'S impair take up of nutrients due to reduced acid

Last edited by rainbowsrock; 07-06-2017 at 07:22 AM.

 
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Old 07-11-2017, 07:35 AM   #6
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Re: Eosinophilic Esophagitis (EoE) - Help

Quote:
Originally Posted by rainbowsrock View Post
I don't know anything about EoE or Tecta

I do have nightly acid reflux which is controlled by a raised head of the bed a low dose PPI and Gaviscon Advance liquid. I don't really have heartburn in the day. Just reflux at night and if bending down, when weeding the garden for example...so it seems postural to me

I don't think you said what the endoscopy revealed?

I haven't thought of it as an allergy but I too get the choking feeling with aspirin and chocolate (which I should be avoiding with reflux)

Sometimes my own saliva goes down the wrong way causing coughing fits. And 3 times food has gone down the wrong way in a very scary way (twice it felt life threatening) Each time I have been eating sweets
I thought as I must have a lax LES Spincter which lets acid/bile up maybe the valve at my throat is faulty too
My Sister and Daughter have the throat thing to a lesser extent, and my Mum had it bad. She called it her 'funny throttle'. She did live to her mid eighties though
I have mentioned it at the Doctors, but not received much feedback

So like you I chew thoroughly, and am keeping off sweets
I know how scary it is

If your endoscopy had revealed reflux damage you'd have been offered a PPI I think
Though if in the early stages of relux no damage may have been evident

It's understandable to not like taking medications every day. But I am on blood pressure and cholesterol lowering medication every day for life and am glad about that as it reduces the risk of heart attack/strokes

Try not to worry....it makes everything worse

Edited to add I looked up Tecta...it IS a PPI (Pantoprazole)

For anyone who has to be on a PPI long term it makes sense to supplement with calcium magnesium and a multi vit as PPI'S impair take up of nutrients due to reduced acid
After the endoscopy he said I had a 50/50 chance of having EoE. This is because he noticed some kind of ring during the procedure. And when the biopsy came back, it was confirmed that I have EoE. There was absolutely no mention of GERD or acid reflux.

So the doctor recommends that I take Tecta (which is a PPI as you mentioned) for two months to try it. Even though I was fine for months before the diagnosis, I am now more self conscious and anxious when I eat food, which is making it more difficult to swallow because I have less of an appetite.

 
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Old 09-16-2017, 06:26 AM   #7
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Re: Eosinophilic Esophagitis (EoE) - Help

Hi, I have had Gerd my entire adult life and EOE for the last 10 years ( since my gallbladder was removed). I have been tested for food allergies both by skin and blood tests. The results showing I am allergic to nothing. However, the doctor had my eliminate Gluten and dairy along with a stronger PPI Zegrid 40mg 2 x day. My next scope was better however, a year later it is bad again and now I have a chronic chest burning. The doctor now says EOE sufferers can get results but additionally removing shell fish, egg, soy, nuts . I have done this as well and no relief from the burn. I also do acupuncture and Chinese herbs to try to get off the PPIs but they are very hard to come off when you have these ailments. If you get relief from the diet changes you may not have to be on them for long! I am a 52 year old female. My son is 28 and has the same thing and just started with PPI s and is also doing a milder food elimination diet. Good luck and while it's hard to give up foods you love in the long run you will be healthier!

 
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Old 11-16-2017, 08:34 PM   #8
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Re: Eosinophilic Esophagitis (EoE) - Help

Hi, I also suffer from Eosinophilic Esophagitis and it has been a big struggle for me as well.

I was diagnosed in July 2017 after going to a gastroenterologist for acid reflux, heartburn and dysphagia issues. My gastro suspected my symptoms might be caused by H. Pylori bacteria, so he recommended I get an upper endoscopy done. There is a bag test that can be used to test for H. Pylori, but after hearing that I have dysphagia, he recommended the endoscopy.

After waking up from the anesthesia, my doctor told me he noticed white rings going down my esophagus and suspected that I might have EOE but did not confirm anything until my biopsy was tested. I got a call back about 2 days late and it was confirmed that I suffer from EOE.

The first medication he told me to try was Pantaprazole, used for heartburn/acid reflux. He told me to take it for 2 months and come back for another endoscopy, so I did and the results of my second endoscopy were slightly worse. He then switched my medication to Flovent HFA 220mg and again, told me to take it for 2 months and get another endoscopy. I got my third endoscopy, while on Flovent, this past week and am waiting to hear back from my doctor.

I went to an allergist to test for allergies (tested the whole food panel and environmental allergens) because my gastroenterologist said EOE can be triggered by anything inhaled or ingested. Turns out I have 37 allergies (12 environmental, 25 food)!!

It stinks that EOE is chronic and that we would have to be on medication for the rest of our lives. Good luck to you and hope you are able to manage your EOE!

 
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Old 11-17-2017, 01:16 PM   #9
hbguy1
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Re: Eosinophilic Esophagitis (EoE) - Help

I wanted to update this thread as it has been several months since my last post.

Shortly after being diagnosed with EoE I began getting inflammation in my esophagus about once every two weeks. Sometimes it was so bad that eating solid food was very, very difficult... in extreme cases it could take me an hour or two to consume a big meal due to all the chewing I had to do. It was a real chore getting food down, and I lost weight in the process.

Shortly after being diagnosed, I PARTIALLY went on the elimination diet and it wasn't working for me. This made me fed up and it prompted me to go on a STRICT elimination diet.

While it has only been about six weeks since I have been on a STRICT elimination diet, I am happy to say that I have seen a huge improvement in my swallowing. I don't want to jump to conclusions because I am still early in my journey with the diet, but I have to say that it has been well worth the effort so far. As of writing this, I am pretty much eating at a regular pace again and have not had to deal with the kind of inflammation I was getting before the diet.

I also went for allergy testing at the end of August and tested negative to all food allergies. I am not allergic to any foods, although I tested positive for some environmental allergies which I already knew about.

I'm convinced that dairy, wheat, and maybe soy are responsible for causing my esophageal inflammation. I rarely ate fish, nuts or egg. I also read that dairy and wheat are the causes in most people.

Best of luck to anyone else reading this and remember that if you do try the elimination diet, it is important to follow it completely.

Last edited by hbguy1; 11-17-2017 at 01:20 PM.

 
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