MissMamey

Eosinophilic Esophagitis

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You are not alone :)

 

http://forum.whole9life.com/topic/18585-karens-whole30-log/?findpost=198340

 

Some common ingredients which cause uncommon reactions:

  • avocado & bananas (latex)
  • onions, garlic, coconut, apple, pear (FODMAPs)
  • pineapple, kiwi (enzymes)
  • peppers, chilli peppers, white potato, tomatoes, eggplant, goji "berries" (nightshades)

Do you take any PPIs?

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Thank you for starting this topic thread. I was recently diagnosed with EoE after battling symptoms for years. Doctors have offered little hope for relief since so little is known about the disease. My gastroenterologist prescribed PPIs as an indefinite treatment. Instead of just treating the symptoms, I'd rather eliminate the cause or at least minimize my exposure to it. I'm hoping Whole30 might help to rule out some food triggers.

 

Have you been tested by an allergist yet?

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I'm an ped RN and lately we've had quite of a few of these kiddos in... nasogastric tube feeds of some "allergen-less" formula (neocate I think) is all they are allowed.  At work I always keep my mouth shut when I see parents of auto-immune kiddos giving them McDonald's and cheetos... but I always wonder "what if they just tried the W30...?".  I'd love to hear how this goes for you so maybe I'd have a little under the table stuff for these parents.  "You know a friend of mine tried this thing called the W30..." :)

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PPIs (Proton Pump Inhibitor) reduce your natural stomach acid. While this can be good for some people, for others they can cause ongoing stomach trouble as the body can become reliant on them.

 

Some people do better with digestive enzymes (good if digesting protein is difficult) or just not drinking with meals.

 

This article is worth a read: http://chriskresser.com/how-your-antacid-drug-is-making-you-sick-part-a

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My husband has EoE and I am desperately trying to convince him to do W30 with me. He thinks it's ridiculous. I know it has high probability of helping him. He takes PPI's and still throws up at least daily after meals (sometimes more). I wish he could randomly hear this from someone else besides me bc I think he would give it more credibility. I would be interested to hear of any results you guys have (good or bad) from doing W30. I would also like for him to be allergy tested. He suffers with asthma and seasonal allergies as well. I am on round 3 and feeling great.

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My husband has EoE and I am desperately trying to convince him to do W30 with me. He thinks it's ridiculous. I know it has high probability of helping him. He takes PPI's and still throws up at least daily after meals (sometimes more). I wish he could randomly hear this from someone else besides me bc I think he would give it more credibility. I would be interested to hear of any results you guys have (good or bad) from doing W30. I would also like for him to be allergy tested. He suffers with asthma and seasonal allergies as well. I am on round 3 and feeling great.

Buy your husband the audio version of  It Starts With Food.  Give him an early Valentine's Day card.   You won't have to say a word.

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I've had EoE dilations since 1997, long before it had a name. I used to need surgery every few years but had 4 dilations last year because it kept closing right back up. (I was 7mm vs usual 20mm).

After no progress from the first 2 with Budesonide daily, i finally researched an elimination diet (7 major food categories) & did that for 5 weeks with budesonide (between surgeries). The next surgery I had shrunk back to 9 from 12, but the eosinophils weren't inflamed & seemed to be managed. That was last September & I slowly reintroduced categories one day and then 6 days without it to check for reactions. But I didn't reintroduce gluten, dairy, soy or peanuts based on what I'd learned reading about Whole 30.

I basically eat a paleo diet now & my throat seems fine - and I can actually swallow whole a 12mm pill I've sliced since day 1. To me that's HUGE! Yes, living pretty close to Whole 30 isn't easy, but you adapt, learn new ways to cook & build meals, & it's so worth it to have my throat managed & the potential to reduce my steroid intake, plus all the other physical and mental benefits I've seen.

So I definitely recommend other EoE sufferers to do it.

My only question is I make a slurry of my Budesonide steroid and maple syrup (about 1tbsp) once or twice a day, per doctor's orders. How can I eliminate sugar completely??

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You don't need to eliminate the maple syrup as it is a doctor's order... it is unlikely that it is keeping your sugar dragon alive and it's more important that you have your meds (in a palatable way) than it is to remove that minuscule amount of sugar... I guess you could try dosing down the sugar but there'll come a point when a slurry of crushed up pill is not going to go down without a disguiser...

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I have been battling EoE symptoms for over 20 years, though it was not diagnosed until 2011. I've had numerous dysphasia emergencies and have had my esophagus dialated 5 or 6 times since 2000. I've tried PPIs, an inhaler steroid and am getting allergy shots. I was convinced that life long medications weren't the answer, and decided to try a W30. Well, I'm on day 28 and my symptoms seem to be completely gone! I only wish I would have had before and after lab work done to see if the actual count of eosinophils decreased or if it is all in my head and I'm just chewing my food better. I'm a believer, and I'm not afraid to eat alone anymore. My intention is to reintroduce some foods, and then to remain paleo after that.

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I have EOE! I've been choking since I was 18, and was recently diagnosed at 45. My GI dilated my esophagus, which has helped, and after a food allergy panel showed allergies to eggs and dairy I have cut them out completely. I still have issues, and I don't like taking medicine (I have a high dose PPI) nor do I want to endure another dilation. I've been hoping to find a way to treat it with diet... has anyone tried the Paleo AIP Whole 30? I just read about it today. My issue is I have been avoiding meat since I started having a horrible time swallowing it, and I don't know if I want to go back. I would rather remain a pescatarian, but I also want to heal. Any advice?

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30 minutes ago, STW1971 said:

I have EOE! I've been choking since I was 18, and was recently diagnosed at 45. My GI dilated my esophagus, which has helped, and after a food allergy panel showed allergies to eggs and dairy I have cut them out completely. I still have issues, and I don't like taking medicine (I have a high dose PPI) nor do I want to endure another dilation. I've been hoping to find a way to treat it with diet... has anyone tried the Paleo AIP Whole 30? I just read about it today. My issue is I have been avoiding meat since I started having a horrible time swallowing it, and I don't know if I want to go back. I would rather remain a pescatarian, but I also want to heal. Any advice?

You can do the Whole30 as a pescatarian, absolutely!  Just make sure that you're using the fish, shellfish (if you eat it) and eggs as your protein sources and leave off the 'vegetarian sources' like beans, lentils, tofu etc... 

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I have EoE, as well....my allergies are corn, oats, wheat, barley, rye.

I used to have a really hard time swallowing chicken and shrimp....bizarre, since I didn't have the same issue with beef or pork.  Since being on the PPI and following a Whole30-ish diet year round (I do eat rice when I'm not doing a Whole30), I am MUCH better.

Are you still taking your PPI?  (I absolutely need mine...I notice a difference within a day or 2 without it.)

You are still having trouble swallowing meat after the dilation?

 

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I'm so happy to find someone else! I am supposed to take 40mg of Prilosec twice a day, but I admit I'm not great about taking it. It doesn't seem to help, but perhaps I should be more stringent. Does it build over time? I definitely can swallow easier post-dilation. The recovery was really miserable because it was stretched quite a bit and bled, and I do not want to go through that again. I have completely cut out eggs and dairy (my only allergies), but I keep having reactions to new things like peanut butter and citrus, so I wonder if I'm still so enflamed that things I'm not allergic to are causing irritation. (I've been waking with throbbing pain in the middle of the night that is very different from heartburn.) Licorice root extract tablets really help. 

My GI doc is not very helpful. Thanks the advice... I'll try the Whole30 and maybe the AIP if I'm not better!

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On 7/13/2017 at 11:28 AM, STW1971 said:

I'm so happy to find someone else! I am supposed to take 40mg of Prilosec twice a day, but I admit I'm not great about taking it. It doesn't seem to help, but perhaps I should be more stringent. Does it build over time? I definitely can swallow easier post-dilation.

I don't think the prilosec will work for everyone.  Some people's EoE is caused/triggered by allergens and other's by excessive stomach acid. 

The prilosec does need to be taken every day for best effect....take it 30-60 minutes BEFORE eating first thing in the morning.  Like Melissa Hartwig says about things.....give it 30 days, no cheats, no slips, no special occasions and see how you feel.  I'm on a daily dose of 20mg...I started out on 40mg twice daily, went to once daily and then cut my dose in half. 

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I came here looking for something else just to stumble on this discussion on a condition I could actually have. If so, that means it can be treated! My GP told me I have an unusually narrow esophagus which is why I have difficulty swallowing (bruising from swallowing too big a bite). I also have an annoying throat clearing habit I was going to see a hypnotist about because I can't stop and I have no idea why. Add on top of that the W30 is making me extremely thirsty so every dry swallow is painful. To you who have been diagnosed, does my pain sound familiar? I'm going to make an appointment with my doctor as soon as possible to see if there's anything to be done. Thank you!

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