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Eosinophilic Esophagitis (Eoe)
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Good morning all!  It's been a long time since I've posted here.  I was diagnosed as Celiac at the end of 2007 and have since taken control of my disease and eating in a way that makes me very proud.  I host holidays like Thanksgiving, Christmas & Easter that are 100% gluten free and neither me or my family ever feels deprived.

 

But following up a month or so of recurring stomach pain, I made an appointment to see my gastro for the first time in a couple of years.  The pain was an upper abdominal burning sensation that would come and go and at some points was quite severe.  Of course, my gastro appointment was 3 weeks out, so I saw my primary care in the meantime.  He prescribed Nexium (shocker), drew some blood and sent me for an ultrasound which turned up nothing.  I had already put myself on a fairly bland diet to keep the acid to a minimum, was taking a 2 week course of Prilosec OTC, cut out drinking and limited my coffee/caffeine.

 

Fast forward to gastro appointment - he notes that in my bloodwork, my Eosinophils were high (the number was 12 and the high end of the range is typically 5-7), which he said indicates that I've most likely got some food allergies. He then flips through my chart and says that in my last endoscopy they found evidence of Eosinophilic Esophagitis (PS, I was never told about this finding... I did not get a copy of the report because the endo was just a follow up on my Celiac diagnosis... and at the procedure, he said there was no further evidence of Celiac disease present).

 

So now I had an endoscopy on Monday, 4/29 and he said there is clear evidence of EoE.  I had been sent for a "basic food allergy panel" blood test, but now I have no idea what the next steps are.  I'm 35, going on 36 in July.  Are there any other adults out there who have been diagnosed with EoE as adults?  I'm now eliminating things from my diet, but I feel very scattered.  What are the best ways to identify your EoE trigger foods?  This is much harder than Celiac because it's not just gluten and the trigger is now just a big mystery.

 

I found an allergist nearby that lists EoE as one of her specialties, so I will be reaching out for an appointment there.

 

I'm just very frustrated and looking to see if there is anyone that has dealt with this as an adult (most of what I read about EoE refers to very young children).  And also, my eosinophils were only a 12, which does not seem very high.  I wonder if that can indicate that my triggers may only be a couple of items.

 

Thanks for listening and for any help you can provide!

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Bumping....

 

Hi again - surprised that I didn't hear from anyone else dealing with EoE and Celiac Disease.  I got my Basic Food Allergy panel results back on Friday and it was kind of a shocking punch in the gut (no pun intended).

 

The RAST testing shows that I'm having IgE responses to:

 

Corn - Class 2

Eggs, Soy, and Peanut - Class 3

 

And now my journey begins again - through food labels and frustration and grocery store woes!

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Are there natural alternatives to Prilosec?

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Hi.

 

I am a mom who has a daughter with Celiac and EE.

 

Early steps of EE diagnoses are to prescribe a modified steroid inhaler.  (modified to makes the droplets to swallow, not inhale.  It would be best to avoid this if you can, it can also cause a thrush infection.) 

 

We had to do an elimination diet to identify "triggers".  Gluten free, all top 8 allergens, and peas were avoided.  There was another endoscopy with biopsy to determine there was healing avoiding these allergens.  Then a challenge was done one at a time.  Watching for eosinophil reaction that once activated can cause damage for 12 days.

 

At least have some clear cut foods to avoid! 

 

You can try some foods that are the least likely to cause reaction during you elimination diet.  Slurpees, popsicles, cucumbers, lettuce, or other frozen foods do seem to soothe some of the irritation.

 

There are other adults who might PM you with advice.  There is a known connection between Celiac and EE.  In some cases gluten is the "trigger" for EE.

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    • Yes please, that'd be awesome Having a fun time trying to reply on my phone due to broken screen but will be back on tomorrow after results of doctor appointment to get to the bottom of why they've given me seemingly wrong advice re: next steps. Yup I'll admit to pity, anger, frustration and outright fear, been through the mill of emotions in this first week that's for sure. One thing before I go for that; back when I was self-diagnosing I wanted a full thyroid panel (T3, T4 etc.) and also ESR & CRP checks for vasculitis and similar maladies. Now it seems from my reading they can often follow celiac so my worry level of those has gone up a notch, more blood tests ahoy it seems? Main reason for worrying about those is the nearly constant tight / tender head I have at the moment. Top and sides of scalp. Could be the stress tensing the shoulders and occipital muscles at back of head but after the celiac diagnosis being missed I'm fearful of anything else being missed. Did anyone else have this tight head feeling at the start? Feels like the skin is being pulled inwards, sometimes goes down for a few minutes here and there and gets worse when sitting I think. I see the term "brain fog" a lot but luckily don't seem to have too much of that at present, this is more a physical sensation.
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    • Quick search gave too many responses to TGI Fridays but none to TGI Fridays Buns (or similar) so... I was talking with my sister-in-law (Gluten Intolerant) and she spoke highly of a pre-packaged bun from Fridays. I was hesitant but she gave me one (apparently you can buy them from the restaurant?) and I tried it. Since I'm slow to react I won't know about gluten for a bit but I can definitely say it is the closest to "real" I've had in years! Spongy, doesn't crumble while eating a sandwich and tastes good. Color me impressed! I tried to determine the manufacturer or if Fridays actually makes them but I can't locate anything worth pursuing. Anyone have information on this? Thanks in advance.
    • Thanks cyclinglady! I will!
    • You could ask the allergist to give you a starting point for an elimination diet. You would start out with 5 or so foods and then add in one new food a week to see if you react. If you react you of course drop that food. It is a bit of a pain as everything has to be basically single ingredient to start.  My allergist felt that was the best way to go and more accurate than blood testing.
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