Could this be some sort of allergy / intolerance I haven't though of?

[treeinthebreeze]

Reposted this from general health board to allergy as I thought you guys looking might be more able to help me (please!) Sorry for long post .... My ds aged 5 1/2 suffers from chronic diarrhea. Born at 3.2kg, no complications at 39 weeks. Within 24 hrs vomited a load of bile so they though twisted bowel, admitted to special care and fed through nose, he managed a poo so problem resolved. Going forward for the next 6 months very bad reflux, pain, back arching, on one occasion sick blood. Just about managed to get through it with Gaviscon although thought we should have tried something stronger. Then reflux improved when weaning but skin problems started - very bad eczema. Dr did blood test and advised removal of wheat, skin problem cleared up. Nappies always soiled frequently and always runny. Weight gain always slow and fluctuated between 2nd and 0.4 centile. Lots of bad chest infections and viral induced asthma in first few years - then got a regime of inhalers that now stop these bad episodes. Diagnosed with egg allergy due to immediate reaction. Then started to potty train at age 3 - not easy as still loose stools. Dr said Toddler diarrhea, nothing wrong with him just deal with it. I was not convinced because as he was getting older it got worse not better. referred to hospital consultant. He did tests - no underlying constipation causing the diarrhea, confirmed non IgE mediated allergy to wheat. Tried exclusion of dairy and soy as well - no difference. Colonoscopy and endoscopy with biopsies came back clear - no inflammation. Stool elastase came back clear - no problems with pancreas. Saw a geneticist - no concerns. No behaviour problems. He takes 15ml of imodium a day and still has problems with diarrhea - soiling of pants daily. ds eats a very careful diet with no gluten or egg. We avoid any additives, strange ingredients, processed food. he eats a high calorie and fat diet (has daily prescription high calorie milkshake as weight still on 2nd centile) and very little fruit juice. Dr says he is not sure what else he can suggest. I don't know what to do now. Anyone else out there with similar issues? Any ideas of what could cause this?

[OHforDUCKScake]

Absolutely, without a shadow of a doubt you have to get an appointment with Dr Fox or Dr Shah (the latter consultant would be better) in Guy and St Thomas hospital in London.

It sounds like EGID, even if the colonoscopy comes back clear. Its absolutely terrible that you have all had to go through this for so long. You need specialist help and the above is the absolute best you can get. Even if it isnt EGID (im no expert) they will help you. They honestly will.

To go private its £260 but will then put you in NHS after that if its needed.

Your poor son.

[looseleaf]

This sounds so similar to our DD in many ways and you've obviously had a very hard time, I'm so sorry. Our dd can't have wheat, dairy or citrus but we didn't work this out for a long time and were repeatedly told toddler diarrhoea is common, so upsetting allergies not picked up more easily...

In your shoes I would go right back to basics for a few days before slowly reintroducing foods to see if that clarifies or helps but hoping someone more experienced will come along. We did this for a few days and tried to base meals mainly round rice/ homemade chicken stock/ simple soups etc but it's so stressful not knowing and yet knowing your child isn't thriving so I hope you can find answers somehow.

Another really useful thing I found was that apparently people often crave the foods they're allergic to (how annoying is that!) So this was how we found citrus causing dd ongoing stomach aches. If it's any consolation she's getting much less sensitive and having had diarrhoea as normal now doesn't get it even if eats wheat by mistake which she did recently.

[treeinthebreeze]

Yes I did wonder about citrus... I have been looking at salicylates on the internet and I think they are in quite a few different fruits and veg. It seems that some people can be sensitive to these. I am however, so wary about cutting much more out of his diet as he struggles to put on any weight as it is. When I have cut things out in the past to see the effect he has lost weight - weight he can,t afford to lose. But I think you are right loose leaf I will have to go right back to basics and just re introduce things one at a time - Easter holidays are probably going to be the easiest time as there is no school and i am in total control.

i am glad to hear that your dd is getting less sensitive to things, it seems that can be the case and I hope it is for us too.

I will definitely speak to another doctor and thank you ohforduckscake for the doctors names.

[NotAnotherPackedLunch]

You might find some useful information and support on eosinophilic disorders here
When they took the biopsies did they give you the histology results, and if so was there any mention of the presence/numbers/locations of eosinophils? If so, then it may help you get referred to GOSH more rapidly.
I hope things improve for your son.