Anyone had Vit B12 deficiency before being diagnosed with coeliac disease?

I had a coeliac disease blood test done Monday and hopefully will find out my results on Monday. I originally put my symptoms down to thyroid issues but seems like that is not the case. However my vit B12 (active) is 27 and vitamin D is 20. Members on Thyroid UK said this was extremely low, (so thankful to them for being so helpful) I am feeling like rubbish, very sluggish, tired, constantly have a belly ache, flatulence, weight loss, etc. What symptoms did everyone have with coeliac and b12 deficiency?

[Whydothis]

For the six months I had symptoms before diagnosis, I had everything you have listed, plus diarrhoea, aching joints, deep splits in the skin on my hands, mouth ulcers ... - and I had no idea that all these things were connected with one another until I started eating GF, and they have all disappeared (some sooner than others). Now after 2 years, I feel brilliant - so there is hope!

My B12 was nothing like as low as yours, so I am not surprised you feel so awful - I hope you get your diagnosis soon and then you can start your recovery.

Don't forget though that it is worth having the official diagnosis, and they will almost certainly want you to have the endoscopy and biopsy to confirm it, so don't change your diet until after that to make sure you get correct results.

[Hidden in reply to Whydothis]

Was your blood test positive for coeliac, or only on biopsy?

[Whydothis in reply to Hidden]

The blood test was positive - coeliac was not even suspected by my GP until the results came back, so I was lucky it was included in the tests done. Then I was told I needed a biopsy to confirm it.

[nellie237 in reply to Whydothis]

Since Covid the guidelines have changed:- if you are under 55 and the blood test is > x10 than top of range then a biopsy is not offered, and referral is to dietician only. Unfortunately, I believe these guidelines will remain.

[Whydothis in reply to nellie237]

That's interesting - I can understand why! (It wouldn't have applied to me as I was 65 when diagnosed).Provided people are given a firm diagnosis and then the appropriate support after a blood test, it probably won't do any harm, as the endoscopy is invasive, and not fun!

[Hidden in reply to Whydothis]

Love the fact your GP didn't even suspect coeliac, despite all text book classic symptoms! Nothing like consistency in the primary care sector with regards lack of knowledge and negation of the prevalence of coeliac. It's only like 1 in every 100 folk - why do they still act surprised when coeliac symptoms result in a positive coeliac test!

[Whydothis in reply to Hidden]

Yes - if he had asked me the right questions it would have helped! To be fair though, I had not connected everything together, and only went because of the gut symptoms and didn't talk about the other things, as I thought they were different - possibly age related, plus I believed the joint pain was arthritis - so he acted on what I complained about and assumed bowel cancer (so CD was good news, although it is easy to forget that now!)

[Hidden in reply to Whydothis]

That is exactly what I did and also weight loss is concerning despite eating everything in sight and it isn't my thyroid cos that is normal! So it is something else. But the doctor said that it was normal with IBS and that she will prescribe me medication to help. I said absolutely not, it is not normal to diagnose ibs without investigating first and it is certainly not normal to lose weight without even trying! I said I'd rather speak to my own gp who organised these tests as he was far helpful and said if all comes back clear he will refer me to a gastroenterologist & if coeliac is revealed, he will refer me as well for that.

I'm very worried about bowel cancer... No blood in my stools as far as I can see but very irregular bowels, calprotectin was normal so no inflammation.. Just so worried atm couldn't sleep a wink last night.

[Hidden in reply to Whydothis]

Bowel cancer! I bet you were relieved it was coeliac. This is the ongoing issue that we have in NHS where only isolated symptoms are discussed, and the body is not treated as a whole system. No NHS doctor that I have ever met has ever viewed the body as a system whereby all conditions are either directly related or inter-related, and that leads to the situation we have with woeful diagnosis and treatment of chronic health conditions. The pain in your foot could be because your neck is out of whack. The heart palpitations you are having could be because you are are allergic to a food item. If you have joint pain and digestive problems - why assume they are unrelated? We are not a series of spare parts stuck together in an unrelated and random fashion. It's a whole-body system which the NHS in it's pharmacological-led and butchery 'wisdom' has decided to entirely ignore. Eastern and traditional medicines have it right in that sense, western medicine is just a disjointed capitalist enterprise with no interest in making the whole person better, but just fire-fighting random symptoms and politely managing people into worse health a lot of the time.

[Rachmaninov2 in reply to Hidden]

I agree wholeheartedly, we should be treated holistically. I am currently researching my list of symptoms and will then put my conclusions to my GP. I have no medical training, this is something the GP should be doing.

[Hidden in reply to Whydothis]

Hi thank you so much for replying. I highly doubt I have coeliac tbh because as far as I am aware, none of my family nor my parents have coeliac and neither do my siblings so what are the chances really?? But the gp did check anyway I guess due to my symptoms. I've just asked a Q on the pernicious anemia website regarding how much b12 should I take daily to up my levels cos you're right I do feel like rubbish. Very tired and unmotivated x

[Whydothis in reply to Hidden]

Good luck with finding out what is causing your problems.No-one in my family had ever had coeliac disease either - so it was a complete surprise!

[Hidden in reply to Whydothis]

Really?! How old was you when your coeliac was diagnosed and did you have symptoms of it all your life? Experienced rapid weight loss? I have always eaten whatever I wanted.. Including gluten. I am betting it isn't that but we shall see. I wish I could just find out what is causing all of these symptoms.

[Whydothis in reply to Hidden]

I was 65 when diagnosed. I had had various digestive problems over the years, and about 12 years ago I was told I had diverticular disease, and at that time I felt better when I ate much less bread, but went back to it later - but no, not symptoms all my life.My CD started very suddenly - I went to a Christmas party in early December 2018, (so ate much more bread, pastry, cake etc than usual) and woke up the next morning with extreme diarrhoea - so I assumed it was food poisoning! No one else had a problem though, and I didn't get better. I started having all my other symptoms as well, although I didn't connect them all together. I didn't have rapid weight loss - but I did start being very hungry and eating much more than usual, while still losing a little weight.

I went to my GP in the February, who suspected bowel cancer, and sent me for blood tests and a colonoscopy. The blood test came back positive for CD, so I got the endoscopy and biopsy with the colonoscopy - and I haven't looked back - all symptoms improved rapidly once GF.

I just hope you get yours sorted out, whether it is gluten or something else.

[Hidden in reply to Whydothis]

Now you say that, I look back months previously where I was getting terrible runs after eating certain foods, especially chapatis or any type of bread. Very bloated all the time as well and then ended up being extremely nauseous one day for a while week, and now all of this so maybe I done a lot of damage IF it is CD. I wish my GP would've referred me for a endoscopy and biopsy as it has been 3w now since I've communicated with him, a week wasted cos my blood tests had to be repeated due to a labelling error! Glad you feel better now x

[Whydothis in reply to Hidden]

Let us know when you get your results!

[Hidden in reply to Whydothis]

I will do. I am betting that it is not positive though did you have an IgA (immunoglobin A) along with your coeliac test? Mine was 1.4, apparently they test it alongside coeliac test. X

[nellie237]

My over-riding symptom was nausea and feeling hungover (stomach not head). You must be feeling dreadful.

Has your GP prescribed for your deficiencies?

[Hidden in reply to nellie237]

No he is not aware I will be ringing on Monday regarding my other symptoms so in the meantime I will purchase betteryou b12 spray and see if that does the trick.. Feel like rubbish so anything to perk me up! A member said the spray form is better as it is absorbed into the blood steam just in case I'm unable to aborb it if I have a tablet form.