Eosinophilic Esophagitis (EoE) - Help

07-02-2017, 04:15 PM

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.

07-02-2017, 06:38 PM

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.

07-05-2017, 11:09 AM

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?

07-05-2017, 06:40 PM

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

07-06-2017, 12:04 AM

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

07-11-2017, 06:35 AM

Quote:

Originally Posted by rainbowsrock

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.

Eosinophilic Esophagitis (EoE) - Help

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