Eosinophilc gastrointestinal tract disorder?- anyone?

[yellowbutterfly]

DD now 9 months just been diagnosed with Eosinophilic gastrointestinal tract disorder and we'ver been advised to avoid dairy, eggs, soya, wheat and gluten.

Anyone else?

There is another mum on here whose ds2 has this I'll post on one of her threads for you.

Hello yellowbutterfly, my ds2 (now 2.3 years) has recently been diagnosed with Eosinophilic Esophagitis. It is usually caused by an allergic reaction causing damage to the gut, so that will be why they have advised to cut out the major allergens from your dd's diet.

In our case, we know ds2 is dairy allergic, but his symptoms have carried on even after he has been on a dairy-free diet. He also doesn't have eggs ds1 is egg allergic) and we tried him on a soya-free diet for a couple of months with no obvious improvement. He does seem to be worse when drinking neocate (even though it is probably not an allergic reaction he is having to that) though and we have now switched him to oat milk and he seems much improved now.

Are you under a gastroenterologist and dietician?

hey, thanks for replying.

We have not seen a gastro or a dietician. We've seen a paeds consultant who is an allergy specialist.

The thing is he has done no tests, not that i want DD to have a load of tests or scopes.

A bit of background:

DD was born at 34 weeks. Diagnosed with reflux following apnea episodes and thrashing when feeding. Has mild eczema in skin creases and small patch on facee. Has been an incredibly farty baby, which has bothered her loads.
There is much more but i'll be here all day if i go into it. One of the main problems we have had wit her is constipation. Since breast milk ran out at 3 weeks of age and she was put on formula (SMA at first) she has been constipated, so changed to neocate, which didn't help, so we put her on Aptimil, which didn't help either but seemed better than neocate.

Anyway lactulose didn't work so we took her to see this paed. He came up with the diagnosis. He has put her back on neocate together with: lansoprazole, nalcron, movicol and ketotifen.

Now she is less windy and looks slightly better (i think) i.e not white as a sheet with big red rings under her eyes. But her constipation has not improved despite a huge dose of movicol (1.5 sachets).

She has been diary free, egg free, soya free and wheat and gluten free for 4 weeks now and on movicol for 4 weeks now. I just would have expected some improvement.

What do you think? when did you see any improvement?

Sorry so long, and thanks for replying.

xx

Hi yellowbutterfly, sorry for being so slow to respond.

That sounds like a whole load of medication that your dd is on.

So far as I know, neocate should help with Eosinophilic Esophagitis - it is just that in our (maybe slightly weird case), it seemed to make ds2 worse.

In the case of our ds2, the gastro told us it would be months before the damage to his gut started to repair (assuming that he stopped throwing up tomorrow). Our ds2 is a bit older than your dd, but it could be similar with your dd?