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Autoimmune disease

I'm wondering if I could have celiac disease. I have a few questions

15 replies

Pheefifofuckthisshit · 24/03/2023 17:52

I'm wondering if this could be the "big picture" for me health wise of all my many little health niggles.

I'm more and more frustrated by my GP refusing to discuss more than one symptom or illness at a time.

Soo many years of symptoms. All of diagnosed separately. All of which are on the list of celiac symptoms.

  • Anaemia. Always borderline at best.
  • B12 deficient.
  • IBS and all its joyful symptoms including pain and cramps and a mix of diarrhea and constipation.
  • I've been taken to hospital before in an ambulance for severe stomach pain. Most times though I'm just used to it.
  • Constant tiredness.
  • Low mood.
  • Anxiety.
  • Ulcers in mouth.
  • Face: itchy rash around mouth cheek and jawline (always been told acne but nothing acne related has ever touched it, and it's ITCHY)
  • Poor teeth, even as a kid enamel damage leading to fillings needed.
  • As a kid I'd suffer most of the time from rashes to elbow and knee areas.
  • I crave constantly for high calorie high sugar foods.
  • Headaches.
  • Achey body.
  • Dizzy. I've collapsed before and been handed a prescription for vertigo. 🙄

Been prompted to think it all over this week after spending most of the week in bed feeling crap, clearly very anaemic, IBS through the roof, needing to rebook my b12 etc etc.

Few random questions off the top of my head..

🔸I've had bloods done a few times by my GP but I don't think they'll have included the testing for celiac is that right? I'll try and add a photo of all the things the gp blood tests included.

🔸When I was taken to hospital in an ambulance with stomach pains would celiac have been tested for?l as a routine test?

🔸Would I need to get in touch with my GP and ask to be tested specifically for this?

🔸How long does the process usually take?

🔸Is there anything I can or should do in the meantime?

I'm just beyond fed up of feeling so crappy all the time. This last week has been the final straw, I need answers. 😔
I'm wondering if I could have celiac disease. I have a few questions
OP posts:
ZaZathecat · 24/03/2023 18:10

You could buy a coeliac blood test on line and do it at home. That may not be a definitive answer but if it appears to be positive, at least your go might take it seriously and get a formal test done.
I am coeliac myself and was probably undiagnosed for years, leading to osteoporosis and anaemia with hair loss among other things. It's important to find out if you have it asap to prevent anything getting worse. Good luck

Pheefifofuckthisshit · 24/03/2023 18:21

Oh gosh hair loss has been an issue here too.

I wasn't sure if the tests you could do yourself were reliable. I'll do some looking into it thanks.

I think I would like to know either way.

OP posts:
Girlattheback · 24/03/2023 18:34

Some of the symptom you list are CD symptoms. Ask your GP for a blood test but do not change your diet before having it. It’s the only way you’ll know for sure.

Pheefifofuckthisshit · 24/03/2023 19:29


OP posts:
ZaZathecat · 24/03/2023 19:32

CD = coeliac disease

Anyonebut · 24/03/2023 19:32

CD as in Celiac Disease.
Wirh those symptoms I also think it’s definitely worth testing for it.

PotterofGryfindor · 24/03/2023 19:46

Think about why you need to be tested. It doesn’t gain you anything. In your shoes I would try a gluten free diet and see if it improves your health. Even if you don’t have it you may feel benefits for a gluten free diet.

ThisBeautifulLife · 24/03/2023 19:49

Hi OP, you definitely have a lot of the symptoms for possible coeliac disease. I was diagnosed 4 years ago, and my daughter is also coeliac. You need to ask specifically for coeliac screening. The blood tests are anti tTG, and Endomysial antibodies. You need to keep eating gluten in order to get an accurate result.

ThisBeautifulLife · 24/03/2023 19:58

Also just to say, the reason the testing is important is because a positive result would give you access to bone density scans, and pneumococcal vaccine, as well as regular health checks to make sure you aren't suffering any deficiencies that could affect you, and to ensure the gluten free diet is working for you.

FurAndFeathers · 24/03/2023 20:05

PotterofGryfindor · 24/03/2023 19:46

Think about why you need to be tested. It doesn’t gain you anything. In your shoes I would try a gluten free diet and see if it improves your health. Even if you don’t have it you may feel benefits for a gluten free diet.

It gained me a DEXA scan to check bone density, dietary advice and vaccination access

so you’re wrong, a proper diagnosis is important for longterm healthcare

Natsku · 24/03/2023 20:09

Definitely ask your gp for blood tests to check for coeliac disease. Gold standard is to then confirm with a gastroscopy but I think nowadays if the bloods show very clearly that it's coeliac disease then you might not need the biopsy and with your level of symptoms I reckon they might show quite clearly.

Forfrigz · 24/03/2023 20:16

Coeliac is extremely common but they rarely test for it unless you become very ill or you request it specifically. The reason for this is the drug companies make a lot of money selling you things to mask the symptoms while your health deteriorates. Fun fact a lot of women who have repeat 'unexplained' miscarriages a really have untreated coeliac disease. Ask for it and make sure you keep eating gluten until it's ruled out.

brogueish · 24/03/2023 20:17

Testing is absolutely worth doing so other risk factors can be monitored. It's an autoimmune disease not a passing allergy! You wouldn't tell a type 1 diabetic to just avoid sugar...

Just ask your GP to test you to rule it out. They're unlikely to say no.

Frankley · 24/03/2023 20:31

I have Coeliac disease. I didn't have many of the classic symptoms but my blood tests for ferritin and folate were both low ( inspite of me trying to increase foods that should have helped) for years before l was diagnosed.
I was eventually tested when l became anaemic.
A relative then asked his doctor for the test as he had mild symptoms. The doctor didn't really want to do the test as he didn't think the symptoms were severe enough but was eventually persuaded. He was a bit surprised when the result was positive. Relative felt much better on a gluten free diet.
Ask to be tested, the symptoms vary a lot and you need to know.

Pheefifofuckthisshit · 25/03/2023 14:12

How I didn't cotton on what CD stands for really shows what level I'm functioning on this week. 🤦😱 Apologies.

Yes I would like to know for sure one way or another. My mum and nana have/had osteoarthritis issues as they've aged (and unsurprisingly looking back lots of the same symptoms I do) and so if it will mean access to that side of things being more monitored or even on the doctors radar I'm all for it. Plus being aware it's an autoimmune disease I feel it's important. I've been so so poorly this week I've been a bit of a liability. I'm a single parent carer to two kiddies with a big age gap between them, and both very different but real needs. I need to get my health in order a little if possible as this just isn't sustainable.

Also I am autistic and very black and white about things. I like to know and have the facts of things. Uncertainty isn't my friend.

I am going to try and book in to discuss it with the gp. Will probably be a phone call initially I think.

OP posts:
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