Anyone with coeliac

[laralou28]

When I had my son 7 years ago I started getting bad symptoms similar to coeliac. Weight dropped off me. I had a lot of coeliac blood tests and all came back fine. Was still eating gluten at the time. When my son turned 4 he was diagnosed coeliac. Found it very strange considering I was struggling too. 7 years later I'm struggling by with severe fatigue. Stomach issues have got better over the years but I avoid pasta and bread. Recently my blood results I had low normal Ferritin and b12.
When I eat it feels like I have food stuck in my throat. Do these sound like symptoms of coeliac and should I get an endoscopy? Been looking into private.

My coeliac presented as severe fatigue and stomach issues. Although my stomach didn't always appear to react to gluten. I can't say I felt like food was stuck in my throat. However the list of symptoms is very long and vary from person to person.
I'd say it would be worth getting the endoscopy. I'm sure you know to ramp up gluten intake before hand. My consultant advised eating lots of gluten for at least 6 weeks before hand or risk a false negative. Its counter intuitive but having an official diagnosis is important if you are coeliac
There is a strong genetic component so I'd be surprised if your son was coeliac and you weren't.

@ItsallBollocksanyway

My coeliac presented as severe fatigue and stomach issues. Although my stomach didn't always appear to react to gluten. I can't say I felt like food was stuck in my throat. However the list of symptoms is very long and vary from person to person. I'd say it would be worth getting the endoscopy. I'm sure you know to ramp up gluten intake before hand. My consultant advised eating lots of gluten for at least 6 weeks before hand or risk a false negative. Its counter intuitive but having an official diagnosis is important if you are coeliac There is a strong genetic component so I'd be surprised if your son was coeliac and you weren't.

Thanks for your reply. I still eat some gluten maybe I need to eat a bit more then. I could eat one bit of gluten for each meal would that be enough? I ate a bread roll recently and looked 6 months pregnant. I had a gene test too came back I have one of the genes and my son has 2

I didn't think I was coeliac as I felt like I cut out gluten yet no difference to symptoms. When I was actually diagnosed I realised how much stuff had gluten or have "may contain..." on the label. I'd imagine if your son is coeliac you probably aren't accidentally eating gluten as much as other people would be so may have a low level of gluten in your system .
I'd contact your doctor or if you go private check with the consultant about upping the gluten every day. Mine may differ with yours as I'm not in the UK. Mine was insisted on me eating several portions of gluten everyday. Those 6 weeks was my Swan song to pizza, beer and pastries

Just wanted to say that I have coeliac and before I was diagnosed and cut out gluten my main symptoms were fatigue, low B12, low ferritin and feeling like something was stuck on my throat when eating. This last symptom was actually a form of acid reflux which went away completely when I cut out gluten. You should definitely get tested but like pp said you have to make sure you are eating gluten when you are tested otherwise it can show as a false negative.

Why go private? If you feel like food is getting stuck, your GP should refer you for a gastroscopy on a two week wait. Carry on eating gluten until you have your test, they can test for coeliac during the gastroscopy. It’s quite possible given there’s a possibility of it being a family trait so I would push for a test.

@ThePontiacBandit

Why go private? If you feel like food is getting stuck, your GP should refer you for a gastroscopy on a two week wait. Carry on eating gluten until you have your test, they can test for coeliac during the gastroscopy. It’s quite possible given there’s a possibility of it being a family trait so I would push for a test.

Because I have anxiety so will need to be put to sleep for it

@Bobbots

Just wanted to say that I have coeliac and before I was diagnosed and cut out gluten my main symptoms were fatigue, low B12, low ferritin and feeling like something was stuck on my throat when eating. This last symptom was actually a form of acid reflux which went away completely when I cut out gluten. You should definitely get tested but like pp said you have to make sure you are eating gluten when you are tested otherwise it can show as a false negative.

Thanks for your reply. Sounds the same symptoms as me. I will definitely be getting tested. I do get acid reflux a lot with it too.

I was diagnosed with coeliac in 2011.

I started getting bouts of low blood sugar, passing out, severe fatigue, extreme weight loss and they done the blood test which was extremely high (should be between 0-20, mine was 3000+). I also had low B12, iron, vitamin D and folate.

I would get tested again - your symptoms do sound similar and the fact your son has it could be an indicator.

If you have IgA deficiency then your coeliac blood test can be a false negative so an endoscopy would be a better test.

@Vicky1989x

I was diagnosed with coeliac in 2011.

I started getting bouts of low blood sugar, passing out, severe fatigue, extreme weight loss and they done the blood test which was extremely high (should be between 0-20, mine was 3000+). I also had low B12, iron, vitamin D and folate.

I would get tested again - your symptoms do sound similar and the fact your son has it could be an indicator.

If you have IgA deficiency then your coeliac blood test can be a false negative so an endoscopy would be a better test.

Thanks for your reply I'm definitely going to get tested I need to know for sure now

I have just come across this post - it's interesting reading all your remarks. Last week I was diagnosed with Non-Coeliac Gluten Intolerance. I have to cut out gluten from my diet as I have an Intolerance to it. However, I don't have Coeliac as I don't have the antibodies in my small intestine. I hope this makes sense & that I have explained it properly.

I had food sticking when swallowing due to reflux and was diagnosed with gastritis and oesophagitis and CD. Ten years later I developed the same food sticking feeling and reflux but this time is was oesophageal cancer. I'm only 44. If food is sticking, you need need urgent endoscopy and they will do it under GA if needed. It's highly likely to not be serious but please don't ignore it.