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.

I have multiple autoimmune diseases, take multiple immunosuppressants and steroids and I've had covid and was fine. I've not shielded, do a high risk job and I am not having the vaccine. But that's just me...as I'm sure you know everyone with an autoimmune disease has their own presentation, symptoms, systemic effects etc

As coeliacs we might have dodgy spleens (about 1/3 of us do) so we’re priority group 6 for the vaccine.

I have no health conditions apart from being coeliac and I am 37, today I received a text asking me to book in for my vaccine which I now have scheduled for next weekend. I’m in Sheffield

My problem is that I have all the symptoms of coeliac disease, but I have not had a positive coeliac test because I don’t eat gluten ( obviously, as it makes me so ill) . I did ask years ago whether it would be worth eating it for six weeks to get tested, but I was told as it makes me so ill there wasn’t any point, as either way I would have to avoid it. So I don’t have an official diagnosis on my medical records.
I suppose I need to contact my GP?

I have hashimotos and coeliac disease, I'm not expecting to get called for the vaccine outside of my age group. I don't personally consider myself to be at risk

@SirVixofVixHall

My problem is that I have all the symptoms of coeliac disease, but I have not had a positive coeliac test because I don’t eat gluten ( obviously, as it makes me so ill) . I did ask years ago whether it would be worth eating it for six weeks to get tested, but I was told as it makes me so ill there wasn’t any point, as either way I would have to avoid it. So I don’t have an official diagnosis on my medical records. I suppose I need to contact my GP?

It will take months if not years for a diagnosis. Even before the pandemic it was a six month wait for an endoscopy appt. I imagine there’s a real backlog now.

So you’d probably get your covid jab anyway even if not a priority before a diagnosis.

You could ask if they’d diagnose on blood test alone but they generally don’t. You’d need to eat gluten for six months.

@DwarfQuasar

I have hashimotos and coeliac disease, I'm not expecting to get called for the vaccine outside of my age group. I don't personally consider myself to be at risk

You’re in priority group 6.

I am 57, so that puts me in group 6 anyway I think , on age alone ?

I would need to eat gluten for six months ?!? I thought it was six or eight weeks ? Gluten makes me so ill that having to eat it for a few days would be difficult enough. I even get skin rashes if I bake something with normal flour, so I can only use gluten free even if it is for someone else.

Sorry, I meant six weeks,

@SirVixofVixHall

I am 57, so that puts me in group 6 anyway I think , on age alone ?

I think group 8.

Coeliacs get it before the 60-65 group. But after the 65-70 group i think. Certainly before late 50s.

Yes you are right, my age makes me group 8 not 6, I don’t know why I had 6 in my head.
Not sure what to do now. We have been isolating for an entire year, I have only seen two friends for socially distanced walks when allowed, and neither of those people very often. I haven’t seen any family, been into a shop or cafe , or into another house, nothing for a year, so being able to feel a bit less worried by having the vaccine would be really great. It didn’t worry me, not having an official diagnosis as I have to be extremely careful with gluten anyway, but now it is clearly an issue.

So my GP is saying that coeliacs are not group six, and that I will be called up by age ?

Any advice on what to say to him as I have an appointment shortly ?

Despite what posters up thread have said, coeliacs are not automatically group 6. Coeliac UK have said the same, only if reduced spleen function.

I'm wondering whether you can get a genetic test for coeliac disease, since you can't really eat gluten foods again. There are genetic markers for it. Perhaps ask your GP about that?

Yes I think I will get the gene test done, as it is hereditary too so I need to keep an eye on my dc, particularly the one with Hashimoto’s.
GP nurse rang and it seems they are not putting coeliacs into group six, wasn’t clear if this is surgery policy or at a higher level or that I misunderstood and it is simply that they aren’t putting me into group six.
About a third of coeliacs have spleen disfunction I was told, and as this isn’t tested for, them surely they should assume that all coeliacs are at greater risk ? Rather than leaving it up to individual GPs ?

I also have Coeliac and Hashimoto OP. Currently I am planning to wait a bit until more is known about the effects of the Oxford vaccine on these conditions (I'm not taking Pfizer due to allergies). I may change my mind at some point though.

I would need to eat gluten for six months

Personally, I wouldn't do the challenge just to get an official diagnosis to get the vaccine, as you would potentially need 2+ years to recover fully from gluten exposure and regain your health.

There are many people in your situation and the GPs may be sympathetic to this if you talk to them

I would do as CrunchyCarrot suggests and get a genetic test, it may show up there. Sometimes gluten sensitivity can also be evident through good quality comprehensive Food Intolerance blood tests (which can help substantiate your case)

Also, have you considered signing up for spare end-of-day doses as some are suggesting on MN?

Is your DD officially diagnosed OP?

Also, as a PP said, your GP may require an endoscopy for official diagnosis and you may risk catching Covid when you go to the hospital to have it done. Not worth it in the current environment IMO

They are speeding through the vaccines. You are group 8 for age. So even if you don't manage to get into group 6, you will not have long to wait. Perhaps you are bit as close to the front of the queue as you would like, but that queue is moving fast!

that queue is moving fast

Yes, I agree. Not worth going to all that trouble for the sake of a couple of months

Hopefully now on age alone it won’t be too long although we are behind some areas here.
My DD has Hashimoto’s, she had a coeliac blood test four years ago and that was negative, but if I show positive for the gene I will get both dc tested.
I have geographic tongue, and pitting and marking on my teeth, which along with my thyroid disease and extreme reactions to gluten also suggest coeliac. I was told the marks could be tetracycline damage , but apparently this is a common assumption when they can also be caused by coeliac disease. I get an itchy bumpy rash on my elbows if I have been in external contact with wheat flour.
Even small cross contamination makes me ill, cramping and diarrhoea, painful skin.

Coeliac disease is listed in the Green Book which lists conditions which qualify as Group 6. It is phrased as ‘coeliac syndrome’

Adults have normally had to have the biopsy to have formal diagnosis and I know some people choose not have that done but still describe themselves as coeliac because a blood test can now be very good in identifying it.

You can ask your Doctor to look at the Green Book again as coeliac is listed under the spleen issues category.

OP, there's no harm in your DD having the tests repeated at some point in the future (perhaps every few years) to be on the safe side.

Make sure she gets the full panel done (Total IgA, tTG IgA, DGP IgA, EMA IgA, Anti-Gliadin IgG & IgA). I did these privately, I can't remember if all of these tests are done by the NHS

In your case, remember that coeliac can present as Dermatitis Herpetiformis (through the skin) and is diagnosed through a skin biopsy (sometimes not coming up in bloods at all)

So don't disregard or doubt your symptoms if you have them

This site has useful information besides www.coeliac.org.uk:

www.celiac.com