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Small Bowel

kate12345

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kate12345 Apprentice
kate12345
Posted

Has anyone ever had transient small bowel intussusception show up on an ultrasound? Was it determined to be from celiac? Did it resolve with diet change? Thanks, Jennifer

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beebs Enthusiast
beebs
Posted

I get transient i/s from gluten ingestion. I have had it 5 times since 2009 at first I didn't connect it to gluten at all. But then I went gluten free for other symptoms and 6 weeks into the diet I went to a restaurant and broke the diet, within 2 hours I was projectile vomiting and then the agonising pain started - My mum took me down to hospital but because I was pregnant they took me to labour ward thinking I was in pre term labour. By the time it was over about 3 hours from onset it was too late for an ultrasound. My GI is certain thats what it is (classic symptoms), it is the same each time - but on different scales depending I guess on how much gluten I have ingested.

The time before last I really thought that was it, I was going to die -my mum thought the same as well. It was very scary.

With regards to the ultrasound - if its transient it would only show up when you are actually having an attack if you know what I mean. So you would have to be having an ultrasound while violently ill.

There are lots of studies that have found that 20% of i/s patients suffer undiagnosed Celiac. There is deffo a connection.

kate12345 Apprentice
kate12345
Posted
  • Author

So what did they do for it? Is it a weak spot from damage from celiac? Since it is transient, do they fix it or does it get better on diet? Thanks. Jennifer

beebs Enthusiast
beebs
Posted

Because mine is transient (at this point) it has so far resolved on its own - who knows how long that will continue to happen? That in itself is extremely rare - usually you end up in emergency surgery having parts of you bowel removed- that is the far more common scenario. However Transient I/S is the one that is associated with celiac. Remaining gluten free means that I don't get it anymore, but I have had it once since that really bad episode - it was nowhere near as bad, I am pretty sure I was cross contaminated or something (ate at a friends house who said it was gluten free, but she doesn't really understand it blah blah)

So - basically I live every day in fear:(

It is often associated with complete villious atrophy. Have you had a biopsy?

I am basically hanging out for the vaccine to be produced so I don't have to worry about dying every time it happens. It is honestly the most agonising thing I have ever been through very similar to labour. And when it's bad, I can't even get up to get the phone to call an ambulance, I can't even talk...I have never been on my own thank god - but I always worry about it!

kate12345 Apprentice
kate12345
Posted
  • Author

It is my daughter, just turned 5, who has it. She is scheduled for biopsy next week. She is only positive for DGP IgG out of all the tests. I think it was that that triggered them to test for celiac. We are in TX. Thanks

beebs Enthusiast
beebs
Posted

The tests are notorious for giving false negatives to children anyway. So even if it showed nothing I would still hope they would be giving her a biopsy. Good luck - I hope that you get some answers!

GFinDC Veteran
GFinDC
Posted

And negative biopsy or not, she should still try the gluten-free diet. The tests are not 100% reliable.

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beebs Enthusiast
beebs
Posted

Yeah - I reckon after testing is done, even if its negative then try the gluten-free diet - I am not one who usually thinks everyone should do it willy nilly, but there is a connection between transient i/s and celiac. And the testing can be false negative - especially in kids.

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