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Anyone with Eosinophilic Esophagitis (EOE)

(9 Posts)
Sweetpeasandcarrots Sun 06-Mar-16 06:25:52

My DD (3yrs) has just been diagnosed. I am overwhelmed.

Does anyone have any experience of EOE? How did you identify the foods to avoid? Did you see a nutritionist or dietician on the NHS?

I'm so upset that DD has suffered undiagnosed for this long.

My DD is allergic to dairy and I think possibly fish. Im keeping a food diary and the last few times she choked she had fish. I feel like I'm guessing everything. Each time I give her something new, I then read an article saying I should avoid it in under 5yrs etc, and I'm scared to give her anything. She's also a very fussy eater (which I completely understand now!).

sorry to moan. DD has yet another infection from nursery and is really under the weather and I've just noticed she has thrush on re tongue too (which I would've treated with yoghurts etc in the past). I feel like failing her

Gobbolino6 Sun 06-Mar-16 06:44:12

Didn't want to read and run. My husband has it, and also my cousin's little boy in the US. It's treated very differently over there. Do research online before going to your next appointment. Although it's getting more common, many doctors haven't seen a case. There are so!e good online support groups based in the US.

LordTurner Sun 06-Mar-16 07:30:10

My husband also has this and it is very poorly understood here, the doctors we have seen have rarely ever seen a case and it took years to diagnose. We still don't know what causes it as the allergy tests have all come back clear so far. It's also really rare for an adult to develop it.

How is it treated differently in the U.S. gobbolino? If there was some sort of decent treatment for it we would consider going over for private treatment.

Try not to worry sweet pea. It is a complete pain but you and she will figure out the triggers and hopefully things should improve. Fingers crossed for you flowers

Gobbolino6 Sun 06-Mar-16 08:28:11

It's similar streroid treatment but they are much more involved with allergy testing, regular scopes to assess success etc. My husband's GE here isn't even convinced it's food related!

Sweetpeasandcarrots Sun 06-Mar-16 09:12:19

Thank you so much for posting. It really means a lot knowing someone else knows what I'm talking about! I will make a list of everything I need to ask!

Gobbolino6 Sun 06-Mar-16 10:02:32

It's not easy having a rare condition but there isa support out there x

timeexperiencer Sun 06-Mar-16 16:58:00

I don't have EoE but a related disorder. I know it's scary but getting the right diagnosis is a really great step- my food allergies weren't diagnosed till I was 18.
I'd recommend the charity FABED for support (Families Affected By Eosinophilic Disorders)- there's a lot of advice and commiseration out there.
The food diary is really important. My brother tested negative for his food allergies with blood and skin prick tests, but a dietician quickly identified wheat and dairy as the issue from a food diary. I've seen dieticians a couple of times on the NHS, and you should ask about it at your next appointment. I suggest going in with a written list!
I'm part of some support groups based in the US. Cincinnati Children's Hospital have done/are doing pioneering work with eosinophilic disorders. The treatment plan is different there, but I don't think I'd like their frequent scopes. Over here GOSH has been leading research, but I'm a few years out of date now.
Mostly I just want to reassure you that it'll be ok. Lots of us really struggle with the pain of this disease, (I often think food restrictions are worse for the parents, especially when the children don't remember differently), but at the same time lots of us have grown up to go to university, become experimental cooks, and live lives as happy as anyone else.
If you want to PM me I'm happy to share more about my personal experiences than I want on a public forum. smile

Sweetpeasandcarrots Tue 08-Mar-16 12:50:58

Thank you, that's very kind

Gingerlilly Sun 05-Feb-17 20:10:21

My 5 yr old DS has EoE. Started when he was 2 and we only got a diagnosis last year. It is true most doctors know very little about it. We are lucky enoug to live near Leeds and the LGI have been brilliant. dS has now had 3 endocosopy/ biopsy. We know some triggers are dairy and soya but we still have problems ongoing so I suspect sugar. The next course of treatment for us is a course of steroids we need to be prepared for mood swings and a fatter face but it will be worth it if it helps. We get a lot if problems with school insisting on 48 hours after being sick butsince he is often vomiting this can be difficult. It is hard to offer advice as each case is very individual but you are not alone. I would say look at soya though if you are using this as a dairy alternative, I am sure this is what caused DS problems in the first place as as soon as I stopped breast feeding we used Soya becuase of the dairy allergy and that is when all the problems stared.

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