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Anyone had an endoscopy to test for celiac disease?

(17 Posts)
Leapoffaith00 Sun 29-Sep-19 08:45:40

Had blood tests recently as I have felt more tired than usual and it was really getting me down. Bloods showed low iron it also showed positive results in an area that suggests celiac. Therefore, my GP has referred me to have an endoscopy. I really have a fear as I choked when I was small so have also been cautious when chewing my food. Stay clear of any form of tablets and only take when necessary. I know it sounds silly but I really don't want it done. I read that if it comes back as negative, I may have another diagnosis of something else (can't remember the name now) as my bloods showed positive but biopsy doesn't. Therefore a chance of developing celiac. So given the option to cut gluten out of my diet.
I really wouldn't mind just cutting gluten from my diet now but have been advised not to as it will impact on results of biopsy.
Anyone had this experience?

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Cosyjimjamsforautumn Sun 29-Sep-19 08:55:02

DS is being tested for coeliac but theyre putting a camera up his intestine/bum end under sedation so according to his letter from the endoscopy clinic he'll need me to give him an enema and then once bowels clear drive him to hospital. He's not happy but it has to be done to get to the bottom (no pun intended) of why he feels unwell.
Not sure why your test would be something you swallow to see stomach end. Can u check with yr doctor nd tell them u r very anxious about it

Leapoffaith00 Sun 29-Sep-19 08:59:48

55Cosyjimjamsforautumn oh bless him, hope all goes ok. I just googled it and it said an endoscopy (via mouth). I thought it would be the same procedure as your son is having (in which i would prefer, even though not a pleasant one). I have only just been referred so probably have to wait a few months, in which i really wish i didn't as I feel so yucky at the moment). I'm now hoping I have it wrong. I have been reading how the diagnose it on Google.

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Silvercatowner Sun 29-Sep-19 09:03:58

Endoscopy via the mouth is generally used to definitively diagnose coeliac. OP - if you are offered or opt for sedation you will most likely not be aware of the procedure happening.

LoveistheLight Sun 29-Sep-19 09:04:40

I had an endoscopy. To be honest, i was more nervous and stressed myself out for no reason. I changed into a dressing gown. I was taken into a room with 3 doctors or was it one doctor and 2 nurses? Don’t remember. I lay on the table on my left side. They injected me with an anaesthesia. I fell asleep and woke up with no discomfort at all and staring at the lovely face of my husband. They gave me tea and a biscuit and sent me home. All in all was an hour. Easy peasy lemon squeezy.

BeardofZeus Sun 29-Sep-19 09:08:39

I’ve observed endoscopies of both the upper GI tract and and colonoscopies.. the patient is sedated (usually conscious sedation - so still able to follow commands (like swallow/relax/breathe) but no real memory of the event afterwards. They look/sound more scary than they are, and the doctors are really very quick about taking photos and samples to provide evidence for/against a possible diagnosis

Leapoffaith00 Sun 29-Sep-19 09:10:15

03Silvercatowner and 04LoveistheLight ok, thankyou. I am probably working myself up too. I have never had anaesthetic before so maybe nervous about that too.
I wonder why 55Cosyjimjamsforautumn ds is not having this procedure.

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Leapoffaith00 Sun 29-Sep-19 09:11:46

08BeardofZeus thankyou. I'm thinking I have to have it done.

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LoveistheLight Sun 29-Sep-19 09:15:34

Sounds like it’s because he’s having a colonoscopy and endoscopy at the same time. Usually if both procedures are recommended, they are done together. Since the patient does have to be put under and its just better to do it once rather than be put under again.

CoeliacK Mon 30-Sep-19 14:34:04

Hi there

Not sure if you have checked out Coeliac UK's website already but this link: may help with more information about getting diagnosed.
They also have a helpline so am sure if you had any worries or questions they would be able to help.
Good luck!

HopefulFor2020 Mon 30-Sep-19 15:06:04

I've had it done and I have a weird throat phobia. They asked if I wanted to be sedated and I said 'yes please, very heavily'. I don't remember any of it. I did wake up crying but that's because I react weirdly to all kinds of anaesthetic (not dangerously, I just get emotionally overwhelmed for some reason). Had a slightly sore throat and was tired for the rest of the day but honestly have absolutely zero memory of the procedure and managed to practically inhale a subway not long after it

Leapoffaith00 Mon 30-Sep-19 17:19:59

34CoeliacK that's really helpful, thankyou so so much. I will take a look at that.
06HopefulFor2020 same phobia as me then. Thankyou, I'm also worried as I have never had anaesthetic either.

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faelavie Thu 03-Oct-19 01:41:33

@Cosyjimjamsforautumn Not sure why your test would be something you swallow to see stomach end

Because coeliac disease primarily causes damage to the small intestine. Upper endoscopy visualises the duodenum which can have a different appearance in coeliac. This wouldn't be visualised if going up the other end!

OP, this procedure is gold standard for this so I do recommend it if you want some answers.
Also if you're worried about the sedation, it's important to note that you don't have to be heavily sedated. Where I work, most patients just have numbing spray and drive themselves home afterwards, but then our gastroscopies are usually performed transnasally (through the nose) which is often considered more comfortable. It's worth ringing your unit/hospital to see what they can offer you if you are phobic.

Leapoffaith00 Thu 03-Oct-19 07:47:33

41faelavie thankyou. As soon as I recieve the letter I will. My gp said it would be a couple of months. Can you advise how much gluten I have to eat. I wish I could stop now but know it's important not to, to get a true result. It's just my tummy aches all of the time. I suffer with a bad back too so it's making it feel worse. Can hardly walk some days.

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faelavie Thu 03-Oct-19 08:47:50

@Leapoffaith00 Advice from Coeliac UK states "As a general guideline, the recommendation is to eat some gluten in more than one meal every day for at least six weeks before testing."
Good luck, you'll be ok. Hope you get some answers!

TalbotAMan Thu 03-Oct-19 11:03:57

I had one last year. I didn't have sedation. It was unpleasant but tolerable and it only lasted about 10 minutes. I have had worse experiences at the dentist. A colleague has had three and she finds them ok. You can't choke; you are in a hospital and there are at least two medical people in the room with you.

I would recommend having it because that is the only way to get definite diagnosis.

justilou1 Thu 03-Oct-19 11:12:51

I have one every two years... I have had them under twilight sedation (preferred option) which is as @BeardofZeus described, and lightly sedated, which was tolerable, undignified and a bit uncomfortable, but not definitely not painful - even while taking biopsies. I would definitely choose the twilight sedation one though!!!

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