Celiac Disease?

jessicatombari

Hi there! Does anyone here have Celiac disease? I have a few questions and was wondering if I could reach out to someone who has experience with this illness? Thank you!

Unknown

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GailK1967

I'm not coeliac but I have 3 kids who are.

jessicatombari

beingmore1 wrote: »

My dad and uncle have it.

GailK1967 wrote: »

I'm not coeliac but I have 3 kids who are.

How did they all find out they have it?I have had blood tests and scopes that were negative but I am still feeling like I do have this illness. They told me "IBS" but I started a gluten free diet and I feel amazing! Every symptom I've had since elementary school (I'm 21 now) has disappeared within the first week or two! Did this feel the same for both of you and/or your kids?

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livingleanlivingclean

Perhaps consider seeing someone (ie. A dietician) about following a low FODMAP diet. Many people who think they have gluten intolerance actually have issues with FODMAPs instead...

RachelElser

Not me, but my brother. There's a specific allergy test your doctor can do. It was a bit pricey because there weren't a whole ton of labs that run it. But that was 10 years ago so maybe it's less expensive now.

He also had a SHITE ton of blood test and scans and what not. Talk to your Dr about the test specifically for Celiacs. I mean they were testing for crazy diseases that are prominent in Asian countries, or mostly in different races but didn't do the Celiac test for three years!

Good luck!

jessicatombari

livingleanlivingclean wrote: »

Perhaps consider seeing someone (ie. A dietician) about following a low FODMAP diet. Many people who think they have gluten intolerance actually have issues with FODMAPs instead...

I do follow a Low FODMAP diet already and I've had no issues with many foods others do. Although it has helped reduce the feeling of bloating overall.

jessicatombari

Relser wrote: »

Not me, but my brother. There's a specific allergy test your doctor can do. It was a bit pricey because there weren't a whole ton of labs that run it. But that was 10 years ago so maybe it's less expensive now.

He also had a SHITE ton of blood test and scans and what not. Talk to your Dr about the test specifically for Celiacs. I mean they were testing for crazy diseases that are prominent in Asian countries, or mostly in different races but didn't do the Celiac test for three years!

Good luck!

Thanks! I have been tested but part of me believes it is a false negative. Just not sure as I don't know many people with this illness so it is hard to relate to only Internet articles all the time.

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Cat3141

livingleanlivingclean wrote: »

Perhaps consider seeing someone (ie. A dietician) about following a low FODMAP diet. Many people who think they have gluten intolerance actually have issues with FODMAPs instead...

This. A registered dietitian (RD or RDN) would be a good next stop. If whatever is going on is food related, an RD will be able to help you find a diet that relieves your symptoms without creating other nutritional deficiencies.

livingleanlivingclean

I'm sure you have to be eating gluten for them to able to do the test - I have a few friends with coeliacs in their immediate family. A couple have been eating gluten free without being tested themselves and refuse to "gluten bomb" themselves so they can find out definitely if they're coeliac.

faramelee

I had blood tests a couple of months ago, including testing for coeliacs and my Dr told me to make sure I included gluten in my diet for a couple of days prior to the test. It came back negative but I have since read info on the UK Coeliac site whereby it states that you should include gluten for at least six weeks prior to being tested for a true outcome. I find it so frustrating!!

I wish you the best of luck

arcountrygirl1931

I have it! It's a pain!