How to ask GP for coeliac testing

[MrsResponder]

I am constantly tired and feeling burnt out. This has been the case since I went through puberty, when a suite of symptoms that I've always thought were connected appeared. Mentioning this I was rudely told to go away by GPs as a child/young adult in the 80s &90s. Gave up for a long time.

I was diagnosed with asthma at 12, PCOS at 21, ADHD at 36 and hypothyroidism at 45. With the last I thought I'd cracked the tiredness, but have had various burnouts since. The last I ended up in hospital with sespis which wasn't diagnosed (or treated) for over a week. Eventually eggerthella lenta was found in my blood sample. No one explained how or why. The googling I've done over it since has been worrying as it suggests that there is usually an underlying cause.

I had a test for coeliac about 15 years ago. A really rude doctor had a go at me when I went in having had a burnout, yet again, causing me to fail a uni course. She said she'd test for coeliac but that it wouldn't be that. I got a sheepish phone call off her saying it wasn't coeliac but did have low IgA. No explanation of what that was. Recently I saw that if you have low IgA a different test is needed to the standard coeliac test and a biopsy would be required for confirmation of diagnosis, which I didn't have back then. I've also seen that coeliac can cause increased levels of Eggerthella lenta in the gut, which made me wonder if that had anything to do with the burnout and sepsis that hospitalised me 18 months ago.

We've recently moved and have a new GP who I've not yet visited. I've no idea if they're sympathetic or the kind of GP I've had in the past so I'm nervous about asking for the test. Do I have a right to one? There are lots of long term symptoms and I believe the other conditions I have frequently overlap making it a possibility I'd at least like to rule out. How do I go about asking and getting a test? My previous experiences have left me terrified of doctors and poor at advocating for myself, I feel like a rabbit in headlights if they are short with me. I also know some get peeved at the use of 'Dr Google', and as explaining how and why I've got to the point of wanting the test involves quoting Google research, I'm not sure how that will go down. Any advice welcome.

Have you tried cutting out gluten?

Don’t cut out gluten. If you have got coeliac you can’t have an accurate test unless eating it and you’ll be really ill reintroducing it after a break.

dd has coeliac disease. Her first test was a blood test and something was raised not low. Then an endoscopy. Just ask for the blood test. However it doesn’t cause sepsis. Nor does it cause burn out in itself. It can cause malabsorption so you get anemia, etc and that makes you tired.

At various points. I've said since childhood that pasta and bread don't agree with me. I'd feel bloated after eating them. I'd often feel starving between meals then sick after a few mouthfuls. Back then you'd just be told to not be daft and finish your dinner. It's always felt faddy to do , so without a diagnosis I'll get to the point of thinking I'm being daft and just go back, because it's easier...like my husband always complains if I get GF pasta and so I just buy the regular stuff to keep the family happy.

Have you tried cutting out wheat though? If you are coeliac your symptoms will improve

my DH discovered he can’t eat wheat by accident when he joined me in a no carb diet, and his trouble was gone very quickly. He spoke to his GP who said he could do the test which involves eating sandwiches for two weeks and he didn’t want to do that because he knew what the two weeks would be like.

we call it wheat intolerant though because he’s not affected by wheat products in the kitchen, we don’t have a separate bread board for instance.

Sounds like a perfectly sensible request - just ask. Do you have an E-consult option? This is where you just fill out a form online (which is read by your GP) explaining what you want and why. Should avoid the need to even have a GP appointment, if you have this option.

I'm self-diagnosed gluten-intolerant and had a negative coeliac test 5 years ago. I'm not sure whether it was due to low IgA or if I hadn't eaten enough gluten for long enough before the test (I'd given it up for a while).

I'm reluctant to have a biopsy (ugh!) so I sent off for a genetic test. That can tell you if you do or don't fall into one of the genetic groups that can have coeliac disease. If you don't, you can totally rule it out. If you do, it can't tell you if you actually are coeliac, only that you could be. So... it turns out I could be, but I still don't know if I am! Still can't decide whether to go to the gp or just cut out gluten forever anyway.

That's what I saw after I'd had that test. I think I stopped for a bit around that time as I was so desperate to feel better, but not sure how long between the appointment and the blood test and if it would have affected it. It says now low IgA would trigger the request for the biopsy, which didn't happen then. I know it wouldn't cause sepsis, but the eggerthella lenta connection triggered me to wonder as it causing sespis usually has an underlying cause from what I've read, cancers and diabetes are referenced, though not coeliac in what I've read, but I've also read it can be elevated in the gut of coeliacs. Yeah, I don't know. The sespis was terrifying and the lack of answers about that and that I keep getting burnt out obviously makes me worried and I want to know why this is happening.

Low IgA wouldn’t usually trigger a request for biopsy but would trigger a request for alternative, IgG-based, tests

The IgG tests aren't as specific so the threshold is much lower for biopsy. Coeliac is 10-20 times more prevelant in people with low IgA than those with normal levels. So I'd want to know for certain I'd been tested properly.

I don't know what the guidelines were 15 years ago or if the IgG test was also performed on that occasion. I had one test for coeliac, the main test, and was told I had low IgA (with no explanation of what this meant and much less available info online)

Assessment | Diagnosis | Coeliac disease | CKS | NICE https://cks.nice.org.uk/topics/coeliac-disease/diagnosis/assessment/

You’ve got 2 choices really.

You can go back & ask for further tests. But you MUST eat gluten until you’re told you can stop.

Or you can do what I did. Which was accept the results of
the blood test but follow a gluten free diet anyway.

up to you.

Yes, “not as specific” means more likely to be incorrectly positive in people that didn’t have coeliac disease. I’d be amazed if anyone referred you for a biopsy without positive IgG or IgA test. But yeah, ask for an IgG test.

You can buy a self test for £15.

https://testmyfoodsensitivity.com/products/coeliac-self-test?currency=GBP&variant=46726091669670&utm_source=google&utm_medium=cpc&utm_campaign=Google%20Shopping&stkn=c7f10e4f9b77&gad_source=1&gad_campaignid=23330574143&gclid=Cj0KCQiAprLLBhCMARIsAEDhdPc1rsWRS9opDDUw3ZCfY2EsESxqBDNwCmxhIZYAKwrFWi8aDsCnePcaAqfgEALw_wcB

Would that work if you have an IgA deficiency?

Yes. It’s an iGg test which is what you need

Why checking Total IgA and IgG is vital:
Prevalence: IgA deficiency is significantly more common in people with celiac disease (around 2-3%) than in the general population (around 0.5%).
Diagnostic Trap: If you have low total IgA, your tTG-IgA will also be low, masking the disease.
Solution: Doctors check total IgA; if low, they switch to IgG tests (like DGP-IgG or tTG-IgG) to find the antibodies, ensuring a proper diagnosis.

ai summary which I’ve copied

If you are asking for a blood test, get Vitamin D, B12 folate and ferritin done too as low levels could make you very tired

I am coeliac AND have hypothyroidism. The two are connected as they are both autoimmune. More likely to be coeliac if you have hypothyroidism. Your GP should test you based on that alone. I highly recommend you do NOT cut out gluten as the coeliac blood test and gastroscopy will not work if you do not have gluten in your system. I would personally seek out a coeliac diagnosis first and foremost other than adopt a GF diet straight away without testing.

The easiest way to get tested again would be to go to your new GP with your symptoms- bloating after gluten, fatigue on a background of hypothyroidism and say you are worried you could have coeliac disease.

In a 7 minute consultation a GP is unlikely to do a deep dive into your results from 15 years ago.

If they do pick up that you have been tested before -then mention your low IgA level and how that may have compromised the result

I would not mention eggerthella lenta

My question about cutting out gluten was because she didn’t actually mention any symptoms after eating gluten just a negative test and a load of hunches and symptoms which could mean anything! She’s now said she gets symptoms.

How's your ferritin?

I had negative coeliac antibody tests for 15 years then one of my sons started to have gut problems so I did the genetic test privately to speed things up and because I had the DQ2 gene the gastroenterologist did the duodenal biopsies which confirmed coeliac disease, officially sero negative but in the meantime I was also diagnosed with another autoimmune disease which probably appeared because of my undiagnosed coeliac, I was really quite poorly by this stage. My son was also diagnosed with coeliac disease too despite negative antibody tests.

The GP sent through for testing, including for coeliac as well as other things.

I always hate going because they look at me like I'm mad if I say I feel exhausted. I mentioned the sepsis, getting really run down with various, presumably, viral things one after the other for 2 months prior, and feeling burnt out before it happened. I said I keep feeling burnout and so now I have the additional fear that I'll end up seriously ill again.

GP asked what I meant by burnt out. I'd already explained that over December into January I've had 6 or 7 times of sleeping through until 11/11.30 without waking ealier, not even hearing the alarm. Which she just looked at me as if, is that all. I mean, that's not normal, is it? If it were nobody would care if you turned up to work at whatever time or just didn't go in, or if you didn't take your kids to school. Clearly that isn't ok, so feeling exhausted to the point where you can't do this also isn't ok.

Anyway, the results have come back and almost everything, including coeliac, have come back normal. Good news, apart from I have no answer to why I feel like this. 3 came back slightly over range, with the note 'tell patient satisfactory'. They were Plasma C reactive protein, B12, Erythrocyte sedimentation rate. I'm not medical so no idea what that means. But if satisfactory unlikely to indicate anything or bring any answers.

Any advice of where to go with it next? I just feel so exhausted I can't function properly, but apparently no issue.

Low vitamin B12 can make you exhausted, and stop your immune system working properly. I only know this because it happened to me! There are high dose supplements available over the counter as well as the normal daily supplements.

Thanks for replying. My B12 isn't low, it's actually slightly over range. That's why I assume it came back as 'satisfactory'. I bought a supplement in December thinking it could be that (my mum has low B12 and gets injections) but I keep forgetting to take it. Seems like I don't need it anyway!

What's your ferritin?