I have a burning question and wonder if anyone can help me with it. My endocrinologist ( I am hypothyroid but with antibodies within range) has suggested I have a coeliac test so I am going to have that in a few weeks time but over the years, I’ve visited trichologists about my hair loss and had blood tests and also with my GP, but the CRP which I understand is an inflammation marker in the blood isn’t high ( it’s around 2/3 so lower than 7). ESR was also normal.
I was curious to find out that you don’t need to experience digestive issues to be coeliac and that it can be a reason that all your levels such as B12, vitamin D and iron would be low-which all of mine have been, so I have been anaemic and also have low wbc too. I also have the white symmetrical marks on my tooth enamel which I was always told was having measles as a child, but found out this is hugely common in people with coeliac.
I know the blood test for antibodies can be a bit unreliable too but if anyone can offer any advice ( I will not got gluten free until after my test) and suggest whether you would be most likely to see some sort of sign in blood works that I would have had??
Thank you very much!
Helen
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It looks as though none of us have any knowledge to help you here.
It is certainly true that there are a few coeliacs who don't have obvious digestive symptoms, and the low B12, D and iron levels could possibly be the only indication , so it is good that your doctor is checking for coeliac.
It will be worth a try. If I were you though I would wait for the test results, as if it is positive you may need to have an endosopy to confirm the diagnosis, and you would need to stay on gluten until after that. If the blood test is negative, it is well worth trying gluten free to see whether it helps.
I do hope you can get to the bottom of it and start feeling better.
The symptoms you described can all be part of Coeliac disease, so I’m glad to hear that your endocrinologist has suggested a Coeliac test. It is quite possible not to have digestive issues, my main symptom was joint pain.
That’s interesting actually. It’s the first mention of it but after many many visits to healthcare professionals.. trichologists, I’d be stunned if it came back positive after all these years of suffering!!
Thank you Penel that’s great advice I think.. I don’t know why they have to load these sort of foods with sugar and other stuff!
Hair loss was an issue for me until I went gluten free. Now I'm fine in that respect. There is 'silent ceoliac' where no symptoms, but not sure how that works in terms of mineral/vitamin deciency. Best thing is have the test, and if results negative, discuss potential of a biopsy just in case. Once all that is done, and still no coeliac showing, do still consider gluten free diet as many believe that it underpins a lot of health issues.
Thank you Benjamin that’s such a help and great advice. I have had a pain in my left side of my stomach area on and off noticeably for years and when I went to the doctor years ago, I remember her saying might be a small gut tear or something to that effect. Anyway, it’s true I just need to get tested and consider the biopsy if negative.
Thanks again, I really appreciate everyone’s input on here😀😀
Hello there. I am a trichologist with coeliac and my hair loss recovered after GF diet as iron B12 thyroid and lots of others need to be at a certain level for hair. My CRP and ESR was never high but it is relevant to your ferritin level. Not sure if that helps!
Hi KatkinThank you so much for replying.. yes it really is helpful! I feel as if over the years those kind of tests have been done and kidney and calcium :bone blood tests etc.. to see if there was inflammation or anything like coeliac, but never just the actual tests or the suggestion of gluten being an issue. It wasn’t until a second trichologist I saw at Phillip Kingsley told me about the full thyroid panel ( which I’m now an ‘expert’ in!!) that I even realised how the nhs are only testing 25% of the thyroid picture.
But I’ve been thinking over the weekend ( and preparing all my cupboards for gluten free for after my test next tues how both trichologists looked at my hair and said it’s an absorption issue. Also, how I low levels in all the important levels.. vit d, ferritin, b12 etc but it was never discussed why this had occurred.
The levels of everything are raised now, everything except my T3 but I’m taking a small dose of that with my T4.
My friend dowsed for me at the weekend and it went wild at the mention of gluten ( over full blown coeliac) !
So I’m really hopeful that in being really strict, this is going to unlock to key to recovery for me.
Thank you so much again ... your knowledge is so so helpful!
No that’s brilliant.. my ferritin is around 93 I think and ESR was low a year or so ago., but not had that done more recently. I made up my mind that I would do the GF diet even if the coeliac test comes back negative and as another member mentioned, stick to as many non-processed things as possible!
Hi Helen, Sorry to not have more info than this, - but I do know someone, who went many yrs, of his life, he's probably in his 60's. He Never knew that he had Celiac disease, til a few yrs ago - He had No symptoms, is what I think he said.
Thank you EBEB it’s incredible as I never knew this. My coeliac test just can’t back negative but I’m just so convinced that I have an intolerance which is causing my symptoms and is causing malabsorption and my hair loss so I’m now following strict gluten free diet for three months to see what happens!! Thank you again x
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