Coeliac blood test

[Star8181]

I’ve had a whole host of blood tests done to find the cause of really bad fatigue (was previously iron, but apparently this is okay now and I’m still shattered). Also GP wanted to rule out causes of my weight loss (it’s my eating disorder, I told her that) and hair loss.
I’ve had a phone call from the receptionist asking me to go in as they’ve found antibodies in my blood and something about ttg. When I’ve googled it, it’s to do with coeliac disease which I know they tested for. I’ve got an appointment next week but does anyone know if this means I’ll have coeliac disease or perhaps an intolerance? I have no stomach problems at all, just the terrible fatigue and hair loss!

My very limited experience - my son has just had a positive blood test and he is now waiting on an endoscopy to confirm the diagnosis.

He was told it was highly likely he had Coeliac from the blood test result but this could only be confirmed after the biopsy. We were also told that as it is an auto immune disease that the symptoms varied and are not always stomach problems in adults.

This info was from one Dr so I also would welcome more advice on this.

Do keep eating Gluten or else the test will not work.

Thanks for the reply @OverFedStanley I guess I’ll see on Tuesday at my appointment. I have to say i am a bit gutted and the thought of having to change my diet but trying not to get to ahead of myself at the moment. I hope your son gets on okay.

Just bumping to see if anyone else knows how sure celiac disease is after a positive blood test? Im still waiting for a appointment with the gastroenterologist, it’s a few months away yet and I am massively struggling with fatigue. Back to teaching next week and I’m concerned I won’t be able to manage my job as I feel so bad. I’m unable to get through the day without a nap at the moment and wondering whether I need to go back to the GP to rule out anything else.

What did the GP say? Have you made any changes to your diet?

Positive blood test and now waiting on a consultant appointment who will probably suggest endoscopy. That’s all I know so far...

Told not to make changes yet until all tests have been done.

If a blood test is indicating coeliac disease then you probably have it.

The good news is that there's never been a better time to be gluten free as you can easily substitute most things these days without too much compromise except sliced bread and a surprising amount of food is naturally gluten free.

Fatigue is one of the main symptoms of coeliac. As is poor vitamin/mineral/nutrient absorption which could cause the hair loss.

I'm from a huge family of coeliacs and the blood test generally is a good indication that you have coeliacs but please don't cut out gluten until you have a definite diagnosis, otherwise you won't get accurate results.
Fatigue and hair loss are common symptoms and believe me, although following a gluten free diet is initially daunting, it soon becomes second nature and you will quickly feel a million times better!

I think a positive blood test is a fairly likely indicator, I'm afraid. Coeliac disease can present with all kinds of symptoms - mine were atypical - but if you have it, it's good to know before there's further damage.

I was completely exhausted due to coeliac disease as it prevents nutrients bring absorbed... your low iron may have been a symptom of that. May be worth asking for blood tests while you wait for your appointment.

I found that the best source of info is the Coeliac UK website, particularly the section for medical professionals. My GP didn't know much so I did my own research.

From what I understand you are more likely to have a false negative than a false positive on the blood test. Definitely don't change your diet until it's confirmed though, they need to be able to see damage which may not show if you've eliminated it and have started healing.

A massive thank you for your replies, it’s really useful. I won’t make any changes yet until I’ve had the endoscopy. Just very frustrating waiting so long when I feel so terrible. I honestly am very worried about being able to work from the completely overwhelming fatigue at the moment. I also look like I’m 5 months pregnant today - I’m assuming the gluten making me bloated!

So I’ve been off gluten for one week today following advice from the GP. I really don’t feel any different except for not being as bloated. Still have terrible fatigue. How long until any improvement in the fatigue?

Have you had the endoscopy yet? You need t9 keep eating gluten until then.

I stopped eating gluten the day of the biopsy and never looked back. Takes a few weeks for your health to improve. If you have Coeliacs you will be a new person once you avoid gluten.

Thanks for the reply, still several months wait for an endoscopy, already been waiting for 4 months just for initial appointment so GP happy for me to try a week or two gluten free to see if it helps as I’ve been so poorly I’m unable to work at the moment. I just thought after a week I might feel a little bit better.

If you are coeliac, it can take months for the damage caused by gluten to your intestines to clear up. That's really odd advice from your GP - you need to keep eating gluten until your endoscopy.

It can take months to repair the damage to your gut tbh.

Sorry it's such a slow process, OP. I had a long wait too and tried various experiments on myself out of desperation, but giving up gluten and then restarting made me feel much worse. (IIRC, I was so tired I almost walked in front of a bus...). My advice would be to check with Coeliac UK the minimum amount of gluten you should eat each day to ensure a reliable result, then try to stick to that.

Thanks for the replies, I guess I’m just so desperate to feel well we’d thought we’d give it a go. I’m signed off work as I just sleep all day and so exhausted I can barely walk and just want to see an end in sight.

If you suffer from Coeliac disease, it is a high chance you are deficient in Vit B12 and that would cause the extreme fatigue (and normally a range of other symptoms).

When you are Coeliac, the problem with B12 is absorption, so the standard B12 blood test can show normal, as it looks at all the B12 in the blood, but not how much of it is then absorbed. You have to do a different test for look at active B12 only.

Have you even had your B12 levels tested?

Can't add anything useful re coeliac diagnosis but agree with pp, you need an active B12 test.

I'd also strongly suggest getting your D levels checked. Ignore current guidelines on levels, you should be between 120 and 200nmol. Your iron levels might be normal but did they test your ferritin (iron stores)? Should be 50, ideally more. Low ferritin and D could also produce the symptoms you describe and if you have coeliac you will have general absorption issues I would think.

The fatigue I had at diagnosis and for the first year or so after was unbelievable. I would literally fall asleep all over the place, esp after eating.

It took a about a year to feel better and for my gut to heal. You get used being GF though and it's mostly fine. Hope you feel better soon

Wow I’ve just googled b12 deficiency symptoms, I have every symptom going. Ill insist my GP does a blood test for this, as well as vitamin d and iron/ferritin, although I know these have been low in the past but never made me feel so poorly. I hate that I can’t even walk to my corner shop anymore, it’s so depressing. @jollyohh, gosh, a year, I can’t do this for a year , hope you are well now.