Tuesday, January 18, 2011

Eosinophilic esophagitis

If you are dealing with this disorder, can you please contact me? I would like to hear your story and treatment experiences.

Basic info...

I was diagnosed several years ago but have stalled with treatments. I need to return to the doc to try and map out a new treatment plan but I want to go armed with as much information as I can. Our first plan was to attempt to eliminate my environmental allergies with shots. I received these regularly for two years. Unfortunately, I was in the 5% the treatment does not work for. I was tested for food allergies but only via skin prick testing. From my reading, I'm not convinced that it's the best way to test for food.

When my symptoms flare up, they are usually accompanied by periodic spasms which make eating more painful. This is a separate condition and I have not read about the two being linked but they seem to be for me. Cold foods, hot foods, and whole foods seem to set this off but when it's really bad, most anything will.

Currently, I've noticed that soft (often highly processed) foods are least irritating. Unfortunately, they are not the healthiest for me and lead to decrease in energy and increase in calories! I have fewer symptoms when I eat cereals and crackers. Consequently, I eat a lot of those to the detriment of my nutrient intake. There is also a ton of junk food that feels better going down but is terrible for me (such as ice cream, cake, etc.).

Suggestions or information on any of these issues would be appreciated.

5 comments:

  1. Oh Melody, that sounds very uncomfortable! Or is it really painful? And it's so odd tht junk food is not the trigger. I will keep you in my prayers!

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  2. oh dear. I know nothing about this disorder, but I'm sending up prayers for you, that you find the right treatment options.

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  3. i had no idea that you suffer from this disorder.

    i hope that you can learn to manage it so that your diet and energy levels are not greatly affected.

    meanwhile, one more thing to offer up. :)

    ALL FOR!

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  4. My son has This, I found your blog just by googling ee, you can check my blog, don't know if I can help you but would love to chat and hear about the symptoms as an adult... He is only 21 mo. So I would love to hear exactly what he is feeling. Please contact me if you would like to. My email is on my blog or you can leave a comment.

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  5. Melody, My 16 year old son was just diagnosed while hospitalized in Nov 2010. My younger son lost 20 pounds when he was 12 because he felt like he couldn't swallow. We took our younger son everywhere and no one could figure out the problem. Now that we know that they both have it we can change their diet so that they can maintain their weight. You can reach me through my blog if you would like to!

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I love hearing from you! If you take the time to comment, I'll do my best to take the time to reply!

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