To Endo or not to Endo...?

[FionaGFG]

As every Newbie Coeliac knows what you don't get warned is that you need to have an endoscopy and biopsies taken to confirm you have Coeliac Disease. Sadly the blood tests alone just won't cut it for a definitive diagnosis.

So after feeling ill for a while you jump the final hurdle and brave the endoscopy to confirm you have Coeliac Disease.Top tips for anyone yet to have that pleasure are...

a) Do ask for sedation

b) Ensure someone is with you when you go or you don't get (a)

c) It's generally the thought of it that is worse than it is...

d) Do make sure they don't leave you on your own listening to everyone else having their Endos. It will put you off and you'll want to run away. Note: Those patients were probably just the brave souls that opted for throat spray only.

e) Be reassured that the whole procedure only takes about 10 mins!

f) If all else just be thankful it's not the other end...

Phew you think. Thankfully that's over!

Kinda like the first rule of Fight Club is don't talk about Fight Club, you'll generally be surprised that after a year plus of living gluten free your Gastro team suddenly seem very keen to see your insides again. Why you ask?

'Oh to square the circle' they'll probably respond in a vague David Brent from the Office management speak stylee. You see, although your regular check ups and blood tests may be fine they do have your best interests at heart. You'll learn that the only way they can really assess if your stomach is healing is by comparing biopsies from your first endo with your second one. They use a scale called Marsh to assess the villi damage. Not surprisingly it appears from many of the GF/ Coeliac forums and blogs that most patients reply with a polite 'Thanks, but no thanks Doc'.

So why am I sharing all this? Well - my time has some. I had the letter for the 2nd endo. Date was noted. Then the hospital cancelled it and it's being re-diaried. Which gives me far too much time to dwell on a million excuses as to why I don't really need it. Of course I know that as my tests for fructose/ lactose intolerance plus the magic camera pill have all been negative the Docs are keen to assess why I am now randomly bloating more than I ever did pre-CD diagnosis - so I should have it. My bloods are A-ok and they've confirmed that the camera pill showed that despite 2 years on from being GF my stomach hasn't healed. Hence the lovely Calci-Chew & Vitamin D tablets I take each day (as it's still not being absorbed properly from food). So I largely share this with you all to ensure I don't chicken out of the 2nd Endo. I also hope it illustrates that for many Coeliacs the journey actually begins after they are diagnosed not before. We all know that there are far worse health problems than CD, yet I hope that this explains that all is not necessarily hunky-dorey once you are on a strict GF diet.

If Miss C can do a hellish cycle ride I know I can brave the next endo. I'll just make sure I have my own GF biscuit with me after so I can refuse theirs despite my sedated state. If all else fails I will take the same approach as last time and nervously chatter to the Prof until he yells through a strained smile, 'Sedate her now' and to me, 'Think of a happy place!'. Sadly I didn't wake up on a beach with George Clooney, but I did survive and yes the sedation worked a treat last time. All I recalled was a fuzzy dreamlike recollection of it all.

So when the date is set and I've survived the next one I'll report back - honest.

[FionaGFG Administrator]

Has anyone else gone through with a 2nd endo and did you find it useful?

[gingerninja]

Hiya, Ive been through both endo's. Basically the second is just to confirm that the diet is actually doing something. Gave me a bit of peace of mind.

Weirdly I didnt think either of my endo's were that bad. Had the sedation, and just a little out of it and sore throat after, but nothing too bad. If you have the choice go private when you get it done. I went through the NHS but ended up in a private hospital.

[FionaGFG Administrator]

Well 2nd Endo done and dusted. So just awaiting the biopsy results. To date my bloods have all been '0' for gluten anti-bodies proving my GF diet is working A-OK. I had the Camera Pill in June which showed that despite 18mths + GF I still wasn't healing completely. So as I've continued to feel rough and bloat up to 42" inches randomly the endo round two was recommended. From all that the Doctors tell me it can take up to 5 yrs for Coeliac stomachs to heal completely. During that time many of us may experience odd flare ups and find some foods hard to digest. So if anyone else is also having odd problems since going GF don't lose heart. Do stick to your GF diet and keep asking your Docs for answers. Most Coeliacs respond well to GF diets, some don't. We're all different. It's always worth getting checked out just to rule anything else out.