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Allergies and intolerances

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Original poster

Celiac disease

39 replies

Ramina · 26/11/2021 09:58

Hi I’m after some positive reassurance. My 19yo son has been struggling with stomach ache/dirorea for some months now. Bloods/stools showed up celiac disease. They want to put a camera down just to confirm. We only found out yesterday. I’m feeling really anxious and I don’t really know how this will change his life. Can anyone who has celiac disease give me advice/reassurance to please?

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Original poster
Ramina · 01/12/2021 09:48

Hi everyone, can anyone relate to this, or have any experience of it? DS is waiting for a gastroscopy to confirm Coeliac. Bloods came back positive. He was told to carry on eating gluten until he’s tested. He has, and he’s been absolutely fine with it, no pain. I just don’t understand how it’s not effecting him all the time, just sometimes. Can bloods come back positive for gluten intolerance too? Could that be what he has as opposed to Coeliac? So confused 😐

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Cutelittlesquizzer · 01/12/2021 09:55

I hope your DS soon gets a diagnosis of told he isn't coeliac. Waiting for results is so stressful.

She initially improved and then went downhill again. Took loads of pushing for referrals from me to get more tests done….fobbed off at every step. Eventually diagnosed with EDS, POTs and fibromyalgia as well. Sadly not unusual once you’ve got one auto immune illness to end up with others as well.

EDS isn't an autoimmune condition . It's a genetic soft tissue disorder where collagen throughout the body isn't formed normally.

handmademitlove · 01/12/2021 10:12

If his blood results are high it is almost certain he has it. I would say that my coeliac relatives all had good days and bad days before diagnosis - it depends on the gluten load. Also the damage to the digestive system means that they are not absorbing essential vitamins and minerals so often have deficiencies eg anemia. And a lactose intolerance due to the damage! The good news is that a diet change makes all that go away in most cases. Long term prognosis is good if you stick to the diet. Try not to worry - it is actually quite treatable.

Original poster
Ramina · 01/12/2021 10:38

@Cutelittlesquizzer ohh bless you. What a stressful and worrying time for you. I have never heard of EDS. I will do more research on that. It’s all this waiting that’s just so hard 😞

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Original poster
Ramina · 01/12/2021 10:41

Thank you @handmademitlove I think that too. It just doesn’t make sense that he’s absolutely fine now. He’s definitely has anemia as he can sleep for England and he feels light headed. I’m not sure if I can give him any iron supplements while we wait for gastroscopy.

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FedUpAtHomeTroels · 01/12/2021 22:32

I stopped eating gluten when I was told I had Coeliac, then I was sent and appointment for an endoscopy and biopsy to confirm, about a year later, I only ate gluten for a few days as the appointment was someones cancellation. The stomach lining and biopsy still showed I had Coeliacs.
I really didn't get any signs of having it, except Very low Iron and it was starting to affect my liver. Now a few years in I do get bloating and some pain when I get glutened.

CovidCorvid · 02/12/2021 06:39

Yes, there’s actually a thing called “silent coeliac” where people have no symptoms. But the internal damage is being done. So malabsorption of nutrients and vitamins because the disease causes the villi in the digestive system to be flattened. So being anaemic is common, often low vitamin d levels and other stuff…..all of which contribute to the person feeling shit. The heightened risk of cancer if someone continues to eat gluten is still there as well.

homealoneagain1 · 02/12/2021 21:54

@Ramina

Hi everyone, can anyone relate to this, or have any experience of it? DS is waiting for a gastroscopy to confirm Coeliac. Bloods came back positive. He was told to carry on eating gluten until he’s tested. He has, and he’s been absolutely fine with it, no pain. I just don’t understand how it’s not effecting him all the time, just sometimes. Can bloods come back positive for gluten intolerance too? Could that be what he has as opposed to Coeliac? So confused 😐
Yes I found this really confusing and actually I still find it confusing. The amateur doctor/detective in me thinks that there are actually different types of coeliac that means people react to different things. I always think it's strange that my daughter wasn't ill every single day before she was diagnosed? Why not? She was frequently ill - much more than she should have been and much more than my other children but definitely not every single time she had gluten. Sorry it doesn't help but I understand!
Gigi26 · 09/12/2021 19:53

I'm so sorry to hear about everyone's experience.

My DD has wheat allergy (anaphylactic) along with other food allergies. Although this is different to coeliac disease - immune reaction against a perceived invader vs immune reaction against self - there's a great explanation of both along with tips for living gluten free in a book I recently bought from Amazon.

It's called The Wheat Allergy Handbook. It was at my local library as an ebook through the Overdrive app but I wanted a physical copy to refer to as needed so I bought it. I also ended up getting the Dairy Allergy one as DD is also allergic sigh. I just need a few more of these hah.

Good luck all and hope this helps someone!

Celiac disease
Celiac disease
Original poster
Ramina · 10/12/2021 17:50

Firstly thank you to everyone who has posted positive and very helpful advice on here. Just a question. We are still waiting on a gastroscopy to confirm coeliac, but my son is feeling very tired and run down. I’m sure it must be low iron. Can he take any iron supplements before he has his gastroscopy? Will that affect his result? It just seems such a shame he’s struggling and it looks like we are going to be waiting for a while for a formal diagnosis.

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MummyItsallaboutyou · 10/12/2021 18:01

Both me and my daughter are coeliac. It's been a while since I was diagnosed (2005) but I'm sure I was on iron tablets while they were carrying out the tests. See if he can get a telephone Dr's app or speak to a pharmacist for advice.

Re the endoscopy, if he's offered sedation, I would recommend taking it. Even sedated I can remember it being pretty horrible!

Both my daughter and I was diagnosed as being asymptomatic, so no obvious symptoms. My daughter had none at all. I was always very thin in the years before diagnosis and tired, but the Dr put it down to life! In the end they found I was anemic.

Original poster
Ramina · 10/12/2021 19:52

Thank you @MummyItsallaboutyou I would of thought the doctor would of at least given him some iron tablets in the meantime. I spoke to a pharmacist today he gave me some cheap vitamins, I doubt they will do much. It’s so strange as my son hasn’t got many symptoms either. I just hope we get a diagnosis soon.

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FedUpAtHomeTroels · 10/12/2021 19:58

I'd been on iron for over 10 years before diagnosis. So maybe call the doctor and ask for some prescription iron. They probably did his iron level in the blood tests he had.

Original poster
Ramina · 10/12/2021 22:13

Thank you @FedUpAtHomeTroels I’m going to ring up on Monday. Yes, they did a full blood check. Re did the ferritin one so I’m sure that was low.

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