Hashimotos/coeliac and Covid

[SirVixofVixHall]

Does anyone have any information on the effects of Covid on people with autoimmune disease ? I am not on immunosuppressive medication, so not asked to shield, but nevertheless I have been extremely careful all year, initially the Coeliac society said that coeliac disease might increase risk for some people.
I have read various things suggesting that Covid can trigger autoimmune disease , diabetes in children etc.
(I have a teenager with the same issues )I am also wondering about the vaccine and which one would be best . I have an allergy so I am assuming I would have to have the Oxford, my dd seemingly does not qualify for having a vaccine any earlier, and yet I am concerned that although her risk of death from Covid is extremely low due to her age, she may still be risking health complications and ideally would be vaccinated earlier than healthy teenagers in her age group. She is 16.

You need to eat gluten for 6 weeks before a test, not 6 months.

Coeliac genetic test does not diagnose. It can rule it out, but not diagnose it.

Endoscopy is not needed for diagnosis. It has not been needed for some time in children (if the levels are 10 times higher than normal). Adult medicine is now following suite, and diagnosing on blood test alone. As the blood test is specific for Coeliac disease, if it comes back positive there is nothing else it can be apart from Coeliac disease.
Very rarely done people will not have a positive TTG due to lack of antibodies - IgA - however the lack of IgA is now routinely tested for at the same time as TTG so would be noticed and then you would need to be referred for a gastroscopy.

Coeliac disease is listed in Group 7 as a third of Coeliacs have reduced spleen function. If a GP is not putting Coeliacs on the vaccine list in Group 6 then it's worth showing them the list yourself via an email - it may well be a harassed admin who missed them off.

www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/blood-tests-and-biospy/

Group 6!

I don’t think I can cope with how ill I will be if I eat gluten again. So I am in a testing limbo.
My GP will not respond to any queries about vaccination, but also did not respond to my queries in the email re addressing getting a probable diagnosis in my notes. I asked him if it would be helpful to have the gene test. Looking at the gene test it seems it looks for the two most common genes but a small number of people will have coeliac disease but not either gene. It seems still worth doing ?

If it helps, many of Group 6 are now finding they can book on the national system, as well as when they get invited to local centres by their GP.

Have a look and see if you can book. It sounds like they have accessed GP records and know who is group 6 and so are allowing them through that way too. Loads of people who are still waiting to hear from GP or don’t even know for sure they are Group 6 have tried and found it works. It will only let you book if you’re eligible. Ignore the info on the front page about only being for over 60s etc. Just give it a try.

Looking at the gene test it seems it looks for the two most common genes but a small number of people will have coeliac disease but not either gene. It seems still worth doing

I would get it done if you can. It's only a blood test (you may have the most common genes so you would have an additional clue to add to the picture). If you don't have them, no harm done. You know you could still be coeliac as may have the less common ones.

I have had the standard blood test via my GP but negative, is it possible to request a genetic test or is this something that has to be done privately?

You should be able to get vaccinated within the next few weeks based on age, keep checking the national booking site. Older family members have several autoimmune conditions and have had either Pfizer or Oxford Astrazeneca, no issues for any of them. One got a headache from the second Pfizer but paracetamol sorted it and one had a sore arm for a few days from Astrazeneca. I don't know anyone who's had Moderna, but it's similar enough to Pfizer that I can't think it would cause any additional issues. Barely a pin between each type of vaccine as they seem to have largely similar effectiveness in real life. So you should be fine with any of them.

You can look up all the various side effects on the MHRA site, but it's worth remembering we're on over 21m jabs and people report anything that happens (much of which might happen anyway). There are some gastric issues identified, but then people with covid get gastric symptoms too, impossible to say if they are a flare-up but maybe unlikely?
www.gov.uk/government/publications/coronavirus-covid-19-vaccine-adverse-reactions/coronavirus-vaccine-summary-of-yellow-card-reporting.

I carry an Epipen and I know that the Pfizer was contraindicated but the nurse I spoke to today said I would have the Pfizer when I was called up for the centre, and that I should go to the appointment but that they might not vaccinate me in which case I would then have to rebook at the GP surgery. It seems madness, and very stressful.

I think sometimes they keep some spare Oxford AZ at a centre with Pfizer for anyone with allergies, but of course they can't know how much they need each day. Hopefully there's a choice of centres when it's your turn if you can't have Pfizer.

OP, have a look at the link shared by MRex. If you bear in mind that the UK has vaccinated 16million+ people, you will be surprised at how few side effects have been reported (both for AZ and Pfizer)

Sorry, MRex's is helpful, but there's also this with the specific side effects people are reporting

Pfizer

assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/964207/COVID-19_mRNA_Pfizer-BioNTech_Vaccine_Analysis_Print__1.pdf

AZ

assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/964208/COVID-19_AstraZeneca_Vaccine_Analysis_Print__2_.pdf

I'm not saying you should disregard the side effects, just that there don't appear to be so many incidents, and this may help you feel more comfortable

Coeliac is definitely group 6 - myself and my sister have both been vaccinated (early 30s/late 20s). Both have coeliac. No other health issues (including any known spleen issues).

@DivGirl

Coeliac is definitely group 6 - myself and my sister have both been vaccinated (early 30s/late 20s). Both have coeliac. No other health issues (including any known spleen issues).

Should have said - we live about 400 miles apart so the whole country is clearly rattling through the groups at great speed.

My daughter aged 33 and coeliac had hers over a week ago. She was diagnosed by endescopy so don't know if that made a difference?

Today, the national booking site has changed its front page. Those who are moderately vulnerable (that’s group 6 and coeliacs) can book on there.

If you are waiting, go and try to book. If you can’t, it probably indicates you haven’t been out in Group 6 ..you can follow that up with GP.

If you email, send a copy of the link upthread to the green book and state the page number (think it might be p11) where coealiac syndrome is directly referred to.

I will try and book , but I think then the issue will be that my GP hasn’t listed me as coeliac. Worth trying though in case. Very grateful for all the help on this thread btw, I know I will get vaccinated in a month anyway but I have been isolating for over a year so another month feels a long time to wait.

I think this is one of the times it shows how important it can be to get an official diagnosis. I know often people are told there's no need for a formal diagnosis if it won't change treatment, I've been told the same for other things. Sorry OP hope you get it sorted.

Yes, formal diagnosis seems important now, when they need to keep Group 6 a bit limited to avoid it escalating and overwhelming the age groups.

Used to be that without formal diagnosis you couldn’t access NHS prescriptions for food either.

Will probably mean you’re not entitled to flu jab either.

Obviously now isn’t the best time to get formally tested with endoscopy so you’ll want to wait. But on the positive side they are whizzing down and people in 50s and are straying to be done and 40s will be started by the end of the month. For those in schools over 40, by the end of Easter hols, lots will done done.

I know it is only a difference of a month, but that means one more month of them leaving me vulnerable to Covid when I am at increased risk. I couldn’t have done the gluten challenge this year even if I had wanted to, as damaging my gut and making myself very unwell would have simply increased my risk if I caught Covid. I am still not clear whether they have wrongly assumed coeliacs are not in group six, or whether they aren’t putting me in that group due to the lack of a proper diagnosis. If it is the latter it seems very short sighted to leave someone at probable increased risk. I have four other conditions that commonly co-exist with coeliac disease, plus the actual symptoms of coeliac disease, so I am clearly not someone who just gets a bit bloated jumping to conclusions. I have also discussed the lack of a formal diagnosis with several different doctors. After over a year in isolation, with all my family also being extremely careful, a month longer before the first dose seems arduous.

Not sure I can have the flu jab as I have Hashimoto’s? But yes, that is one of the issues I wanted to raise with the GP but he didn’t respond and although I had booked an appointment with him , he firstly didn’t call at all, and then two weeks later after chasing it up a nurse called me.
It is so frustrating and stressful. Thank you everyone who has posted, all helpful.

Yes, another month, especially if you were hoping it have had it by now is a very dispiriting....I can totally see that.

The coeliacs I know, and mostly on the couple of threads runninng about coeliacs have all been included in Group 6.

The Green Book section 14a clearly lists the condition.

I’m sorry you haven’t got the official diagnosis via endoscopy. It seems like they were in danger of group 6 spiralling out of control and with things like asthma and diabetes have tightened up definitions. I guess coeliac is quite easy to restrict, as there has always been an official route to diagnosis for adults. It doesn’t help you now and lots of people in all kind of groups who haven’t had the standard treatments or diagnosis have been left off. It’s generally a broad brush system for simplicity and speed and I’d guess GPs have been under pressure to use tight definitions and not to be too flexible.

Hoope you’re done soon.

@SirVixofVixHall

Not sure I can have the flu jab as I have Hashimoto’s? But yes, that is one of the issues I wanted to raise with the GP but he didn’t respond and although I had booked an appointment with him , he firstly didn’t call at all, and then two weeks later after chasing it up a nurse called me. It is so frustrating and stressful. Thank you everyone who has posted, all helpful.

Flu jab is inactivated, it's fine for you to have. Only little kids get the active thing they sniff up the nose.

I've not been included in Group 6 by my surgery and have a diagnosis of coeliac and hashimotos - this is as I expected as I'm otherwise well. My husband is Group 6 and had his first jab last week.

The mention of coeliac disease in the green book only exists as an example of something that can cause reduced spleen function. It's not an absolute reason for inclusion in group 6.

I'd written a long reply sympathising as I'm in a similar boat, but at 57 you should be able to book online any day now I think! Will keep my fingers crossed for you.

Tangerine, I don’t interpret it like that.
The thing with coeliac is 1/3 of people have reduced spleen function, but hardly anyone knows who those are. Therefore, all with coeliac are included. Some in reality won’t have any higher risk than those without but we simply don’t know who, so all are included.

You could say that about all the conditions listed in the Green Book.lol.that they are all open to interpretation, as a number say ‘such as..’. But all the people I’ve spoken to or seen on these threads say that if they have been included and if a discussion with Doctor happened (not often) they simply said all included in Green Group groups mentioned have been included. I have seen advice to GPs about moving onto Group 6 from about 3 weeks ago, where they were soecifcally told to ensure no-one was left behind from vulnerable groups.

Clearly, Group 6 conditions aren’t being applied exactly across all areas and it is really unfortunate if that is the case. Some people have pushed to be flagged and managed it. If you’ve tried and not managed to get flagged, despite showing the green book and asking why not, or putting the question in writing to the PCN, I’m not sure what else you can do.

However, coeliacs are not like asthmatics where there are levels of severity and some quality and some don’t. Those with a formal diagnosis via endoscopy are all one group and are listed. There might be other spleen conditions not mentioned in the gReen Book that GPs could choose to include too, but I take the lists to mean all those that are listed there should be, and that is how it had generally been seen.

Hope you get somewhere with it. Have you had the endoscopy diagnosis? Lack of that has caused an issue for some people as the official diagnosis for adults has airways required it.