My GP has refused to give me a blood test for Coeliac disease even though I filled in the Coeliac society questionnaire and it indicated I should have one. (He also refused to test my TSH before my annual review for my thyroid, I have Hashimoto's). His reason was lack of vials and he also said it would be unlikely that I wouldn't already have been diagnosed with coeliac disease at my age (63) - I don't think this sounds very convincing. I have spent two periods of time (initially 1 year and then 2 years) being completely gluten free. I feel better being gluten free but not dramatically so I would like to find out if I have to avoid gluten completely or if I can occasionally eat it (eg when I eat at a friend's). I know a high percentage of people with Hashimoto's benefit from a GF diet. When I eat gluten it does seem to affect my digestion but I can't see a clear link to any deterioration in my Hashimoto's. I always seem to have high thyroid antibodies whatever. If the effect of eating gluten is delayed in Hashimoto's then it might be hard to identify it, I certainly can't work out what's going on.
If I knew for sure that it is really important for me to avoid every speck of gluten then I would be fine doing that but it is a hassle, I make my own bread etc because I don't like the additives in commercial GF products and it can make life difficult if eating out. I don't want to go to the trouble of being totally GF if I don't have to.
I've bought the over the counter SelfCheck test from Lloyds 'for the detection of anti-tissue transglutimanase IgA antibodies'. I've read that if the test is negative then that is likely to be accurate, if it's positive then it's less accurate and you should get a more accurate test (I think it's an endoscopy). I don't know what the chances of getting my GP to authorise that are.
I haven't taken the test yet but I will in the next couple of days. I've been eating gluten twice a day for about 6 -8 weeks.
Any thoughts?
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Farrugia
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I did one of those tests last year and it was negative. My Endocrinologist that I saw for the first time in August requested to my GP that I had a celiac blood test done. My result came back as high and I had a Gastroscopy done in November and had biopsies taken. My results were I definitely had celiac disease with a marsh score of 3b and it also showed I had gastritis and lack of intrinsic factor which also definitely confirms that I have Pernicious anemia. I am 57 and had no specific symptoms and was really shocked that I had it. I had to pay privately for my Gastroscopy as my surgery messed up my referral and I had been waiting ages. I never stopped eating gluten until I got my results last month. Here is a the link for the NICE guideline that says anyone with Hashimoto's should be tested for celiac disease. It's under the first heading 1.1 recognition of Celiac disease nice.org.uk/guidance/ng20/c...
Thanks Rocky, I didn't know about NICE guidelines recommending testing for people with Hashimoto's. That's really helpful. Your experience also shows that a negative result may not mean much!
That's ok and I only know about the NICE guidelines as someone on the forum told me about it. I hope you get sorted out soon, as someone has pointed out in their answer below that your age shouldn't make a difference and your Doctor should be listening and following the NICE guidelines. As we all know that very rarely happens
I have Hashimoto’s…..had two negative coeliac blood tests 20 years apart via GP …both negative
2016 …after joining forum and extremely unwell, 26 years on levothyroxine, saw just how prevalent gluten intolerance is with Hashimoto’s
Had (private) endoscopy as NHS wouldn’t….endoscopy confirmed as severely gluten intolerant …I had no obvious gut issues …just couldn’t walk! (Quite inconvenient!)
…..subsequent NHS DNA test said probably not coeliac
Going absolutely, strictly gluten free has been transforming
I now can’t tolerate the tiniest speck of gluten without significant downturn..
Hi FarrugiaI purchased the gluten test from Lloyds and it was negative. As far as I am aware they are accurate.
I did one just a few days ago! It was negative, which I was expecting but it just gives a positive or negative' result so there's no way to see if you have a high 'normal' result or not, which I think would be useful.
I'm sorry, I don't know about the Lloyds test accuracy.
Has your GP ever tested you for coeliac? because you should have been tested for it at Hashi's dx.
Having said that..........I was tested for coeliac at Hashi's diagnosis in 2007 per NICE guidelines, and was negative then. I tested very positive last year.
[Edit: I had been going to the GP every few months with symptoms for at least 3 years, before I was re-tested. If you have symptoms they should be investigated, not dismissed]
Hi my sister was diagnosed with coeliac disease one month after her 70th birthday,she was ill for 2 years doctors wouldn’t listen it’s awful the way some doctors treat us,she lost a stone in weight,she even told them her sister has coeliac,I’ve had it since childhood,dont give keep trying to get it confirmed one way or another.
That is awful too and my Gastroenterologist told me that my 3 children had to be tested for Celiac disease and my 4 siblings too. Whether the Doctor bothers to listen is another story
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