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beebs

Member Since 27 Dec 2009
Offline Last Active Jul 09 2014 12:24 AM
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Topics I've Started

How Did You Challenge Your Child And Get Through It

06 July 2014 - 07:46 PM

I am trying to get into a GI asap for testing of my little boy, who has had issues for years and years. He had a biopsy when he was 18 months which was borderline and not enough for a diagnosis because he had projectile vomitting, bad poos an severe reflux his whole life. Fast forward to now and he has been having chronic belly pains for the last 6 months. bad poos (his whole life) and low iron (his whole life). Belly pains are getting in the way of every day life and have been so severe I have taken him to ER over it He had coeliac bloods done a few months ago and they came back negative. Mine are also always negative, and I am coeliac so I don't trust them anyway. 

 

I took him off gluten last week and an instant improvement. 

I gave him gluten twice in the last week - once ended up bad belly pains and vomiting the other time ended up lying and writhing in pain for 7 hours with a "sore belly".

 

I spoke to the coeliac society today - they told me to get him tested again - it is an 8-10 week wait just to see the paed GIs at the hospital. 

 

How did you get through your child being so sick and in pain for that long? Can I give him anything to make him feel better? 

 

I hate this - I hate having to watch him get ill for so long. I'm not sure if I can do it to be honest. 


What Would You Do?

30 June 2014 - 07:21 PM

Hi everyone, 

 

I need to pick the brains of the people on here who know heaps about coeliac. 

 

A bit of background information, I am coelaic and also have EOE, my mother is Coeliac and my grandfather developed bowel cancer in his 40s after a lifetime of sick bellies. 

 

Two of my sons have been seeing a GI for almost their entire lives, one had a scope at 18 months and came back with Marsh 2 changes, Gastritis and ulcers in his esophagus - he had severe reflux and was in lots of pain for about two years of his life. At times lactose intolerant but other times not. 

 

His stools have always been vile. 

 

Anyway fast forward to now, he is almost 5 and started complaining of belly pains all the time, one time so bad he couldn't stand up and was screaming and I ended up taking him to ER. Every day, multiple times a day. 

 

I started a gluten free trial with him (remember - we've been through multitudes of blood tests and an an Endo and still no diag). So far no belly pains and his stools have improved.

 

So my question to you guys is this? Continue with the gluten free diet - or try and seek a proper diagnosis even though we've had no luck for 5 years?