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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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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Would you review this on Find Me Gluten free?  You can  use the app or just go to it on line. If the restaurant isn't listed, there is a way to suggest it.  I have done that and it works.  Many of us look at that site/ app
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