Endoscopy Waiting Times NHS - Gluten Free Guerr...

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Endoscopy Waiting Times NHS

gabbycat profile image
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My daughters blood tests are indicating that she is coeliac. She is extremely fatigued at the moment. Her GP has referred her for an endoscopy and she needs to stay on gluten until it is done. Does anyone have any idea how long the waiting time for endoscopies is?

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gabbycat
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4 Replies

Hi gabbycat, waiting times vary and your daughters GP should be able to give you an indication of waiting times in your area.

It is imperative that your daughter continues to eat gluten otherwise the endoscopy could be inconclusive as the purpose of an endoscopy is to see the villi and to confirm that gluten is affecting it.

it must be very tempting to go GF but please don't as its in your daughters very best interests to keep ingesting gluten until the biopsy so I'd reassure her that she is now in the system and to try and enjoy foods that could well be off the menu after diagnosis.

And good luck with this.

Regalbirdy profile image
Regalbirdy

Hi Gabbycat,

Psychologically speaking, waiting for an endoscopy to diagnose Coeliac Disease can be very hard going and frustrating - at least I know I found it so!

Both you and your daughter understand that gluten is the probable cause of her being unwell and you are possibly feeling a bit stuck in limbo at the moment?

I was able to speed up my waiting time for my endoscopy by volunteering to travel further afield, rather than just sticking to my local hospital. In my case I know that this shaved a good month off the process (even when you include the fact that my own GP lost the initial referral letter 🤨). And when I got to the alternative NHS hospital, the treatment there was excellent. I was very glad I had made that decision. However it still took about 10 weeks from the initial blood test to the final endoscopy results. Maybe this type of flexibility might work for you too?

In the meantime use this time to offer your daughter all of her favourite gluten foods. Depending on her age, it’s a useful opportunity to make the association between the food she likes eating - and how ill/tired it is actually making her feel. It’s also a good opportunity to start saying goodbye to these items in a slow and controlled manner (But don’t make a fuss about it!). In my case it was eating my fill of things like Maltesers, crumpets, KitKats (of all flavours!) , home-made pasta, pearl barley and other ordinary things like wheat crackers and biscuits.

It meant that I had no unfinished business with these foods and was absolutely ready to start my lifetime gluten-free diet. I actually went gluten-free only 24 hours after my endoscopy. I felt ready to do that and it also made it my choice to make the change, rather than having it medically enforced on me. For me that was a subtle but important difference.

Please under no circumstances let your daughter go gluten-free before the endoscopy is done though! It will mess up the results.

Good luck with your daughter.

R.B.

BabsyWabsy profile image
BabsyWabsy

When I was referred, I was offered a choice of hospitals, one of which was private. The private hospital had by far the shortest waiting list, so I went there. My son was also offered a private appointment for endoscopy a couple of months after mine, and in a different area. The point I am trying to make is that it might be worth asking if going to a private clinic is an option. Both mine and my son's procedures were funded by the NHS. I believe this is to shorten current waiting lists if you are in UK.

gabbycat profile image
gabbycat

Thank you everyone, useful insights. I will speak to her GP tomorrow and see what the quickest options are. My daughter is so very fatigued that I want to get to the bottom of this asap

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