Now It May Be Coeliac Disease!

Anoneemoose

Hi again,

Just an update. I had some blood tests done a couple of weeks ago after going to see my doc again regarding my worsening fatigue. He said my ferritin is low so gave me iron tablets. There was also a delay with the lab which meant my vitamin d test result didn't come back until monday. This showed my levels were so low, they were unreadable. This, coupled with my IBS, Fibro, ferritin levels, and the fact my sister has coeliac disease, means he has referred me for an endoscopy.

He said normally they wouldn't refer as I am overweight but he also said they are seeing more patients that are not underweight at diagnosis either. In addition to this, my sister also gained weight before diagnosis.

So, has anybody had the endoscopy, and if so, what were your experiences of it please? Am not after medical advice, just how it was for people who have experienced it.

And also, what kind of difference did people notice when eliminating gluten?

Thank you (again)!

pinkteapot

My hubby has coeliac disease and has had endoscopy and colonoscopy (both at the same time) twice.

You'll be sedated and pretty out of it. Some people don't remember a thing after sedation and some do. The moment where the tube initially goes down your throat can be a little unpleasant (only a little) as it will make you gag, but as you're sedated you won't notice it anywhere near as much as normal. Hard to explain if you've never had sedation before!

One tip - if they do any of the blood tests for coeliac, don't cut out gluten beforehand. You have to have it in your system to get a positive result and therefore diagnosed!

I'm slightly surprised they aren't doing a colonoscopy too. My hubby's coeliac was diagnosed after a colonoscopy where they saw that the vilii (sp?) in his intestine had been destroyed. That's the main thing gluten does to your body if you have coeliac - not sure what they'll be looking for in your stomach but you can ask.

As you'll be sedated you'll need someone to accompany you home and stay with you for the rest of that day. I was sedated a couple of months ago for something different. It's like being drunk afterwards. Get the person to hide your phone or you'll be drunk texting all afternoon/evening!

If you're nervous about the procedure, tell them. They try to do procedures with the least amount of sedative possible, to speed recovery time and reduce the risk of any sort of reaction to it (very rare). I was terrified of what I was having done so they gave me a higher dose of sedative (and a valium to take before I went in!). I don't remember anything at all from the room and was away with the fairies for the rest of the day. :rotfl:

beluga

I had an endoscopy a couple of years ago (also to investigate for Coeliac disease) - I didn't have any sedation, just a spray to numb my throat. It was OK, not the most fun I've ever had (lol) but was over pretty quickly and didn't hurt. I had a slightly sore throat after, like when you've been sick, so soup or ice cream might be nice for after! I don't have coeliac disease so can't comment on the gluten aspect of your question. x

theoretica

When I eliminated gluten (having had the blood test come out negative) the following improved: fatigue, dizziness, brain fog, headaches, sore joints, wind, spots, depression and irritability. On the other hand the first week was horrible as I got withdrawal symptoms and my digestion went a bit iffy for a while but settled down.

SuiDreams

Do not stop eating gluten before the endoscopy, as this will effect the results. You have the option to have sedation or not, I had the sedation and really regretted it, have absolutely no memory of the event and was out of it for a couple of days.

Feel so much better after going Gluten Free. It may turn out that you don't actually have IBS, a lot of Coeliacs are wrongly diagnosed as IBS initially as tests weren't done.

sulphate

I was diagnosed with coeliac disease just over 5 years ago now.

I'm surprised they didn't do a blood test first, as in around 95% of cases coeliac disease can be picked up through a blood test. The endoscopy/biopsy is the gold standard for diagnosis though.

I've had two endoscopies and chose not to be sedated because I was fairly confident I could cope with the ordeal! It's not the most pleasant experience in the world, but I just had a numbing spray in the back of my throat and they don't take very long to do it. After my second one I worked an 8 hour shift You should be able to choose to be sedated if you prefer.

I was a normal weight at diagnosis too. After I stopped eating gluten I noticed an improvement in energy levels and stomach pain/diarrhoea. There are long term health conditions associated with coeliac disease if you don't follow the diet (e.g. osteoporosis) so obviously becoming lower risk for those is a huge plus. Being gluten free is just a way of life for me now.

Anoneemoose

Thank you for all the excellent responses, I really appreciate them. I feel a little less apprehensive now.

I forgot to mention, I did have the blood test which came back negative, but so did my sister and hers came back negative three times. It was only when she had the biopsy that it was confirmed. This was one of the things that meant the gastroenterologist recommended I get referred. My doctor actually phoned and spoke to a consultant to explain my circumstances. IBS for years, fibro, chronic fatigue, aches, pains and the vitamin d and iron levels. He suggested that the low levels suggested malabsorption which of course could be explained by CD.

On the one hand, I am kind of hoping that it is this, because at least it explains things and I can actually do something to control it, rather than it control me. With Fibro, everything, including treatment is very vague. On the other hand, it will be a very, very big change for me which is quite scary.

broasis

Hi OP,

My Dad was diagnosed a while ago and after cutting out Gluten you wouldn't really know!

Saw an article that might be helpful for you:

thebestofhealth.co.uk/what-is-coeliac-disease-how-is-it-diagnosed/

Hope it is useful.