Dual Diagnosis (Celiac/EoE)

[CatcherInTheRye]

Had digestive issues, severe reflux, dysphagia, and bloating on and off for two years. Went to GI, got endoscopy and blood test which confirmed celiac. Been gluten free for about 3 weeks now; feel great although my body is still adjusting. 

Additionally I was diagnosed with Eosinophilic Esophagitis; basically asthma in my esophagus. A biopsy confirmed this. Went to a food allergist, no terrible food allergies (bananas, raw egg whites, ironically I have an allergy to gluten, wheat, rye, and barley that seems separate from the celiac). Right now I'm on a PPI, vitamin D, and Flovent which is an inhaler that allegedly treats EoE in some trials. Hard to tell what my prognosis is depending on how related the two are, but I guess I won't know until I go off the medication for the a while and I have a follow up endoscopy. In the meantime I'm just curious to see if anyone else has the same diagnosis or information pertaining to it. 

[TexasJen]

I was diagnosed with celiac last year on an endoscopy looking for the cause of my anemia. At the time, my GI doc tested m for EoE and it was negative. Fast forward 11 months, I developed sudden heart burn, dysphagia out of the blue. My doc thinks it's EoE. Biopsy was last week and I am still waiting on the results.  I have not started any treatment yet, but I was told that allergy testing is not reliable for diagnosing the cause of EoE. An elimination diet is the treatment. 

About 40% of all cases are caused by gluten, 30 % dairy, and the other 30% are fish/seafood, soy, peanuts/tree nuts, eggs and "other".

Currently, the GI dept/Celiac center at UCLA is recommending that people diagnosed with EoE start by eliminating dairy and gluten for 3months and seeing what happens. Since this is 70% of the causes it should help a lot of people without making them be on a crazy restrictive diet.  If all symptoms resolve, then you have your answer. 

If you are still having symptoms after eliminating those 2 classes of food, then eliminate all soy, nuts, eggs and fish/seafood for 3 months. Then add each class back one at a time and see if your symptoms come back. ( I saw one recommendation where patients were getting a scope every 3 months after reintroducing a food class to check on healing - this seemed excessive to me).

Now, I don't have an official diagnosis, so my looking into the treatment is very preliminary. I'm sure there are lots of ways to approach it.  I should find out my own results in the next several days, so I guess I'll know soon whether to find a similar board like this for EoE. 

Just thinking about eliminating all those foods makes me a bit ill.....I love cheese and dairy. So I guess I'll see. 

[Estes]

I have both eoe and celiac and now that I have been gluten free for 18 months, my anemia is gone.  It is good to get off the iron supliments because mine may have been the cause of my ulcers.  It feels good to recover and heal!  I may work my way down to fewer supliments and lots of feel great days despite eoe, celiac, ulcers, hiatal hernia, and acid reflux. I was on Flovent and omiprizol for a while but I am happy to be done with both!

Best of luck!  I am here if you have specific questions.

[CatcherInTheRye]

I (fortunately) don't have anemia or ulcers. 

@TexasJen: let me know what you hear back about your diagnosis. My GI just told me that 6 weeks of flovent sometimes cures it. Went to great lengths with insurance to get the flovent and even then its a small fortune, so hopefully it works. I can eliminate gluten no problem, hell I could probably even get milk out-but cheese would be a problem. My allergy tests came back saying that the compound in milk I am most allergic to is easily broken down, so my allergist just recommend that I focus strictly on gluten for the time being. He basically said EoE is tricky and that it just takes a lot of trial-and-error. I'm going to put it on the back burner for now though and just try gluten free first. 

@Estes: Yikes sorry to hear about the ulcers from the supplements. I keep having weird side effects from the medications so I can't wait to start healing and move on. I actually also have a hiatal hernia (doctor says its too small to operate on) and a ring in my esophagus (came up in the endoscopy, doctor didn't address it yet) so the reflux and dysphagia may be due to that. Regardless now with the medicine and diet I feel great and so far, so I can't complain or worry just yet. 

If anything causes dysphagia (the most serious issue I'd say) it seems to be potato or peanut butter. But these are also starchy/sticky so it may be a false positive. Maybe I shouldn't eat spoonfuls of peanut butter at a time...

[Estes]

Yes, we like peanut butter in the blender with frozen bananas and a liquid (juice, coconut water, almond milk...). You can add berries or even ginger and turmeric.

[TexasJen]

On 8/19/2017 at 0:10 PM, CatcherInTheRye said:

I (fortunately) don't have anemia or ulcers. 

@TexasJen: let me know what you hear back about your diagnosis. My GI just told me that 6 weeks of flovent sometimes cures it. Went to great lengths with insurance to get the flovent and even then its a small fortune, so hopefully it works. I can eliminate gluten no problem, hell I could probably even get milk out-but cheese would be a problem. My allergy tests came back saying that the compound in milk I am most allergic to is easily broken down, so my allergist just recommend that I focus strictly on gluten for the time being. He basically said EoE is tricky and that it just takes a lot of trial-and-error. I'm going to put it on the back burner for now though and just try gluten free first. 

@Estes: Yikes sorry to hear about the ulcers from the supplements. I keep having weird side effects from the medications so I can't wait to start healing and move on. I actually also have a hiatal hernia (doctor says its too small to operate on) and a ring in my esophagus (came up in the endoscopy, doctor didn't address it yet) so the reflux and dysphagia may be due to that. Regardless now with the medicine and diet I feel great and so far, so I can't complain or worry just yet. 

If anything causes dysphagia (the most serious issue I'd say) it seems to be potato or peanut butter. But these are also starchy/sticky so it may be a false positive. Maybe I shouldn't eat spoonfuls of peanut butter at a time...

Well, the biopsy came back just plain old reflux/esophagitis. No EoE.  This is reassuring in some ways for me. I didn't really want to give up ice cream!  I hope that a gluten-free diet clears up your symptoms for you. For me, I guess it's just no evening snacking, less coffee, smaller meals.   

Good luck!

[CatcherInTheRye]

8 hours ago, TexasJen said:

Well, the biopsy came back just plain old reflux/esophagitis. No EoE.  This is reassuring in some ways for me. I didn't really want to give up ice cream!  I hope that a gluten-free diet clears up your symptoms for you. For me, I guess it's just no evening snacking, less coffee, smaller meals.   

Good luck!

Great news! Glad its not EoE.

Pro-tip: instead of giving up coffee you may be fine to switch to cold brew. Substantially less acid and more caffeine (so you can drink less). It isn't quite as good as the real thing, but you can make it the night before and it can help you ween off the hot stuff.