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Positive coeliac blood test, anyone refused endoscopy?

17 replies

NicoAndTheNiners · 26/10/2018 21:41

It’s my 17yo dd. Has a load of symptoms and we now have blood results.

So positive endomysial antibody IGA. Also tissu Transglutaminase iga level is 96. Fecal calprotectin level is 342.

She’s been referred for a gastro appt which should take about 5-6 weeks and has been advised to carry on eatling gluten as an endoscopy will need to be done and if she stops eating gluten she could get a false negative biopsy.

She’s in agony. Crying with stomach pains, vomits if she eats, terrible diarrhoea. Is missing loads of school which in a-level year is not great.

I’ve been reading that the tissu iga normal level is 4 and under. There is research saying that if this level is 4x higher (so 40 or above) there’s no benefit to an endoscopy as it is definitely coeliac. It’s a consultant at Derby who has done this research and some European Paediatric guideline now follows this. However the British guideline still says you need a biopsy.

I can’t put dd through another 6 weeks of hell. She also says she doesn’t want the endoscopy full stop. She’s needle phobic and won’t have sedation and I don’t think will tolerate the procedure. Am I being stupid if I say ok let’s stop the gluten immediately? I’m hoping to convince the local gastro to give her a diagnosis without a biopsy but if not will ask for a referral to Derby because the guy there will give a diagnosis without if he feels it’s certain.

I get that without a diagnosis she won’t get prescription flour/bread and may well not get extra monitoring, flu vaccinations, etc. Am I missing anything?

OP posts:
TalbotAMan · 28/10/2018 18:25

She's 17 and so it's her decision.

I was diagnosed this year but I am -a lot- older. I never got given the numbers for my blood results, but I did have the endoscopy. I didn't have sedation on the recommendation of a (female) colleague at work who has had several. It was pretty unpleasant but it only lasted 10 minutes and no needles were involved. There was a numbing throat spray but the main problem for me was that I struggled with supressing my gag reflex -- apart from that it wasn't really painful. They didn't even make me change into a hospital gown. I've had worse times at the dentist.

If it were one of my dds then I would stay with her during the procedure and hold her hand and mop her brow. I'd also check the method used for sedation - my impression was that if I had opted for sedation it would have been tablets rather than an injection, but as I didn't take it I am not certain.

The endoscopy does a visual check and a biopsy. I was told it's unusual to see coeliac on the visual check, which is more to make sure that there aren't other things going on, like ulcers or cancer. The biopsy samples the tissue for microscopic examination to look for changes in the villi, which are like very tiny fingers poking out from the surface of the gut. In coeliac disease the villi are shortened or eliminated in the autoimmune reaction to gluten stimulation. Cutting out gluten allows the villi to heal and restore, but this apparently takes some time.

I am only a patient, not a doctor, but villi don't heal overnight and I would doubt that all signs of damage would disappear in 5 to 6 weeks. This level of symptoms is very bad. I am pretty sure with hindsight that I have been coeliac all my life, and have the dental and nerve damage that comes with it, yet I never approached that level. You may be able to get away with putting her on a GF diet immediately without prejudicing the outcome of a biopsy.

As I have commented on here before, I think it is better to have a diagnosis on your medical records. That means you will, as you say, be eligible for the special treatments and it means that you can legitimately demand GF in workplaces and if you are a hospital in-patient. Ultimately, though, there are a lot of stories on here and elsewhere from people who simply went GF and their symptoms went away. Foods on prescription are being taken away -- my local CCG refuses to allow them (in breach of national guidelines) and the national guidelines are becoming more restricted with time.

Fundamentally, she has to decide whether she wishes to pursue this to diagnosis. If so, and given her symptoms, there are two avenues to think about. One is to go back to the GP and ask the GP to ask the consultant for this to be escalated to urgent. The other is to go private - a private diagnosis will be just as valid and a private doctor may be more sympathetic to her age and associated difficulties and be prepared to diagnose on bloods alone.

I came at it from an unusual angle. I was being investigated in relation to the nerve damage and it was the neurologist who did the wide-ranging blood tests to find out what had caused it that threw up coeliac. The GP referred me to the local gastroenterologists as soon as the neurologist's report cam through, but then I hit a bit of a brick wall. Because gastros don't actually treat coeliac, the department clearly saw it as a bit of a nuisance and pushed me (and others) way down the list. That's why, in a case such as your dd's, if I was able to afford to go private I would seriously consider it.

Sorry for rambling but I hope this helps.

Namelesswonder · 28/10/2018 18:55

The blood levels are lab dependent, most places consider if levels are over 100 then for children it’s common to diagnose on 2 positive blood tests and a positive gene test. Having said that the endoscopy is still the gold standard test for both adults and children.

My DD was very poorly and couldn’t wait the required 6 weeks for the endoscopy so I spoke to consultant’s secretary who spoke to consultant. Consultant phoned me and after discussion he put her onto his emergency list for 3 days later. Could you try that.

NicoAndTheNiners · 28/10/2018 18:56

Thanks for your detailed post, definetely very helpful. Totally agree at her age it’s her choice.

I’m hoping the consultant is sympathetic. I have printed off lots of studies I’ve found saying if levels are more than 40 a biopsy is unnecessary as levels are so high it can’t be anything else. So will go to the appt armed with this.

If consultant won’t diagnose at that point it’s up to dd. Other option is to ask for a referral to Derby where their pathway states no biopsy with levels so high. They seem to be one of the few areas which don’t follow national guidelines. So if local consultant insists on a biopsy we could go to Derby.

We could afford a private consultation I guess so that’s something to consider. I know I looked at the price of a private endoscope to try and get one now quickly in the next day or two but that was nearly 3k which I can’t afford. But just a consultation would be cheaper.

Local CCG does still do flour and bread on prescription and while this would be useful it’s not the end of the world if she doesn’t get it, we can buy it. I’m more worried she wouldn’t get follow up care, yearly blood tests, bone scans, etc.

OP posts:
NicoAndTheNiners · 28/10/2018 18:57

I’ve rung and left a message on the answer machine saying she’s in agony and we will take any cancellations. Nobody picks the phone up so can’t actually speak to anyone.

OP posts:
Abra1de · 28/10/2018 18:57

Could you afford to go privately and perhaps get an appointment earlier? We did this with my son because he was diagnosed while on university holidays and we wanted to be around during the process.

Abra1de · 28/10/2018 18:58

Sorry, re read OP?

We didn’t pay this much!

NicoAndTheNiners · 28/10/2018 19:06

Local private hospital quoted circa 2.7k. That was for endoscopy and consultation.

OP posts:
sliceoflife · 28/10/2018 19:08

Paediatric guidance requires 3 things to make a diagnosis without biopsy:
Symptoms - tick
IgA tTg ten times above normal - ie >140 u/ml, at 90u/ml she doesn’t meet this
HLA DQ2 it DQ8 positive on tissue type blood test- has she had this?.
You have to have all 3 to make a diagnosis. From what you are saying your Dd only has 1 out of 3.

The calprotectin is a measure of bowel inflammation which could be due to any number of non-coeliac causes hence an endoscopy would be recommended to exclude things like infection, crohn’s or other food allergy.
CoeliacUK is a serious life long diagnosis so I would want to be absolutely sure you had a cast iron diagnosis before assuming she has coeliac disease without a biopsy.

sliceoflife · 28/10/2018 19:09

Sorry, that should say HLA DQ2 or DQ8

NicoAndTheNiners · 28/10/2018 20:42

Not all hospitals are saying this anymore though. Have attached photos from the Derby pathway. If we lived there she wouldn’t have an endoscopy, would be referred to a dietician....if I understand the flowchart correctly.

Positive coeliac blood test, anyone refused endoscopy?
Positive coeliac blood test, anyone refused endoscopy?
OP posts:
NicoAndTheNiners · 28/10/2018 20:43

And if a normal iga is 4. Then 10x4 is 40 so at 96 she is above it isn’t she?

OP posts:
NicoAndTheNiners · 28/10/2018 20:44

She hadn’t been offered the HLA or dq8, is that the genetic test?

OP posts:
GoodHeavensNoImAChicken · 28/10/2018 20:47

I have coeliacs and never had a biopsy; I was diagnosed by positive blood tests when I was 19: similar to your daughter! I’d lost too much weight by the time i was diagnosed; it would never have been worth a biopsy. So I just didn’t go. No one ever questions it and I get yearly bloods, flu jab etc all fine. I have had prescription food but it’s far far more basic than what it was a few years ago so I don’t bother now.

If I were you, I wouldn’t wait it out. Put her in a gf diet and let her get on with life. If she continues to have symptoms 100% go straight back and go ahead with the endoscopy

NicoAndTheNiners · 28/10/2018 20:53

She started GF as of yesterday and by today is already saying that although she doesn’t feel perfect yet she no longer feels like she’s going to throw up constantly.

OP posts:
NicoAndTheNiners · 28/10/2018 20:53

Good to know goodheavens that you got a diagnosis with no biopsy, thanks.

OP posts:
YetAnotherThing · 28/10/2018 21:01

Another option might be to go gluten free now, but if they really want to biopsy your daughter (and convince her too) then explain she may have to go back to a gluten containing diet for 6 weeks.

NicoAndTheNiners · 28/10/2018 21:06

Yes that’s a possibility but I think it would have to be after her a levels because she can’t miss six weeks of school while waiting for a biopsy.

OP posts:
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