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Celiac And Eoe Diagnosis
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I just received the call that we expected. The endoscopy biopsies revealed Celiac, but also Eosinophilic Esophagitis. I was expecting the first diagnosis, but the second was not expected. We have been referred back to the allergist for more testing due to the EoE. So, I'm a little confused???? If they find that he is allergic to other things, what will I be able to give my child? We are also still waiting on results for the lactose and sucrose tests to see if we need to restrict those things as well. Does anyone have experience with the EoE diagnosis???

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I don't know a lot about EoE but I do know there's a great group of parents at Kids With Food Allergies forums that are pros at it! Maybe check it out!

Hugs and good luck!

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A lot of EoE children are on some sort of elemental formula whether that is by mouth or via g-tube. Neocate and Elecare are the two most elemental formulas and what the majority of EoE children use.

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My daughter has both Celiac and EoE. Celiac was diagnosed when she was 17 months old, EoE was diagnosed when she was 6. All of her allergy testing was NEGATIVE, and that is normal for EoE cases. (because an eosinophil reaction is not a truely "allergic" reaction) We did an elimination diet that included all top 8 allergens and peas free. (YES, it is possible) We narrowed it down for her to be gluten free (never ate gluten since she was 17 months) egg, fish, shellfish, and pea free diet. Identifing the "triggers" and she has never needed to be on a feeding tube.

There is now a proven connection between Celiac and EoE.

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My daughter had the same thing! On their way down for the biopsy they found EE. Her back test showed all beans, peas, rice, pork, mustard, cantaloupe, tree nuts, and apples. I have no idea if she is really allergic to any of that. My friend's son showed nothing on the back prick. I had 2 doctors tell me 2 different things.

1) flovent and food trials. Put her to sleep every 3 months to go look.

2) until she has symptoms don't worry about it. I am not putting her to sleep to just go look. If it gets bad, she will have symptoms. She said that GI doctors do food trials to check if the symptoms go away so if she doesn't have any...then there is no need to do it.

Not sure which one was right. What did they tell you to do?

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My daughter had the same thing! On their way down for the biopsy they found EE. Her back test showed all beans, peas, rice, pork, mustard, cantaloupe, tree nuts, and apples. I have no idea if she is really allergic to any of that. My friend's son showed nothing on the back prick. I had 2 doctors tell me 2 different things.

1) flovent and food trials. Put her to sleep every 3 months to go look.

2) until she has symptoms don't worry about it. I am not putting her to sleep to just go look. If it gets bad, she will have symptoms. She said that GI doctors do food trials to check if the symptoms go away so if she doesn't have any...then there is no need to do it.

Not sure which one was right. What did they tell you to do?

So far we were told to consult our allergist for more food testing. So I called our allergist to see where we need to start. We have started the Flovent and also Previcid. I'm not sure I know what symptoms in him look like? The nurse didn't describe it well and the internet is a little confusing. I'm like you I certainly don't want to put him to sleep that often. What are her symptoms?

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Symptoms (as explained to me by my child who has has EoE for over 3 years)

headaches

dark circles under the eyes

pain when she was younger it was her whole belly area (circled above hip bones, including sides of belly, and up to the lower ribs (solar plexus)~ now that she is older she complains about her throat down into her neck

vommitting ~ GERD like vommitting small amounts of vommit that can come up at any time. especially a sudden stop in the car. But before diagnoses she was all out vommitting about 5 times a day.

she was always a slow eater

was diagnosed with anemia, in younger kids they will chew food and spit it out. as part of the craving non-food items.

the pain does seem worse when the lay down to sleep. so that does leave them overtired and irritable.

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Symptoms (as explained to me by my child who has has EoE for over 3 years)

headaches

dark circles under the eyes

pain when she was younger it was her whole belly area (circled above hip bones, including sides of belly, and up to the lower ribs (solar plexus)~ now that she is older she complains about her throat down into her neck

vommitting ~ GERD like vommitting small amounts of vommit that can come up at any time. especially a sudden stop in the car. But before diagnoses she was all out vommitting about 5 times a day.

she was always a slow eater

was diagnosed with anemia, in younger kids they will chew food and spit it out. as part of the craving non-food items.

the pain does seem worse when the lay down to sleep. so that does leave them overtired and irritable.

Thanks - those seem to be close to Celiac. Those are all the symptoms (except throwing up) that lead drs. to think Celiac. Thanks for all the support.

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Yes, they were nearly all the symptoms of Celiac. My daughter was diagnosed with Celiac when she was a toddler. Had been gluten free for about 4 years. I thought there was cross contamination coming from school or something. Everything was just getting worse and then all the vommitting started.

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So far we were told to consult our allergist for more food testing. So I called our allergist to see where we need to start. We have started the Flovent and also Previcid. I'm not sure I know what symptoms in him look like? The nurse didn't describe it well and the internet is a little confusing. I'm like you I certainly don't want to put him to sleep that often. What are her symptoms?

My daughter has no symptoms. That doesn't mean they couldn't start but she doesn't have any right now.

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    • Did your doctor check for SIBO, H. pylori, ulcers, etc. when he was obtaining biopsies to check for celiac disease?  
    • Oh, and as I mentioned in my own post on pain, xanax. I swear. I tried it just to deal with the occasional panic I had at weird scary symptoms and clueless doctors. I am not a fan of long term use. But I recently found that .25 mg seems to aid with the neuropathic pain. It does not go away, but it helps. 
    • It does sound like a Glutening and you are just a few months into the diet.  It might help if you read our Newbie 101 thread under the "Coping" section.   Here is some information about rice milk: https://www.verywell.com/is-rice-dream-gluten-free-562354 Many, many celiacs are often lactose intolerant temorarily or permanently if you are naturally genetically inclined.  When I am glutened, I lose the ability to digest lactose for a while.   Salad?  Great but it can be rough on a sore gut!  Think soups, stews, easy-to-digest foods that you prepare yourself until you feel better.  Did your folks give you salad after a bout of flu?  Or did you stick with jello and broth?  I am intolerant still after three years to garlic and onions (the lactose resolved, thankfully).  You have a leaky gut (Google zonulin and Dr. Fasano who is a leading celiac researcher to verify that this is true) and that means you can become intolerant to anything (hopefully, just temporarily).   If you are 100% sure that you have had no access to gluten....did you eat out lately?.....then see your doctor.  Remember, celiac disease symptoms can change.  And here is the biggie.....it can take weeks, months or years to heal from celiac disease.  Two months in is nothing, really.  Why?  It takes time to figure out the diet and time for antibodies to come down.  celiac disease is an autoimmune disorder triggerEd by gluten.  once triggered it can go on and on damaging your gut especially with repeated glutenings (accidental or through cross contamination). I hope you feel better soon!  
    • I concur! I literally feel your pain as well. Like, at the moment, lol. Did you have an endo to see inflammation or damage? I am close to begging my GI for carafate or something to coat and protect. How about testing your antibodies to see if they are still rising? I read somewhere here rice milk may not be a good option.  Folks here have also suggested to me to stick with whole foods. Limit processed. Especially stuff that is not certified gluten-free, like chex. I think small amounts of gluten are in processed foids and can add up. I too reacted to lettuce the other day like I was ingesting glass. My sibling  had a food sensitivity panel done and it came back positive for a few things he had been eating a lot of. He can now eat them, but had to cut them out of his diet. Lettuce is probably on mine.  I have been drinking carrot and pomegranate juice,  dandelion root tea with hiney, aloe water, lots of squash, fish. Mild, no garlic, no onions or hot sauce. No coffee. It sucks.  Inflammation can tick off other organs, you mention a "Pain below". Not exactly sure which side, but certainly call your doc Monday. Sooner if the pain increases.
    • You should see a GI specialist before you go gluten free.  They should do a upper endoscopy to check for celiac damage.  Colonoscopy won't show anything related to celiac.  Also no you should not feel worse on gluten free, you should feel better.
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