Celiac or not?

[dannyhashimotos]

Hello friends.

I've been diagnosed as "borderline" celiac for the past 4 years. Have suffered from hypothyroidism since I was 15 years old (currently 27) and have been told that it's related.

I had a decent private doctor who recommended that I went gluten-free to see if there was a difference back in December 2015. He came to this conclusion after the attached blood results.

I went gluten-free and haven't looked back since (I feel great!) but always wondered how he came to the conclusion. Does anyone have any knowledge on the matter and can shine a light a bit more on what it is? I remember him mentioning the IGA deficiency.

[liver-bird]

Hi Danny - if you feel so much better without gluten, then just carry on. It matters more how you feel. Best wishes

[Eugenie47]

Hi Danny, IgA deficiency can lead to false negative results on the antibody tests (and yours are, indeed, negative). So I find it strange, especially given your history of hypothyroidism, that you weren't then referred for a biopsy in order to get a clear diagnosis of coeliac disease. But if you are feeling so much better with a gluten-free diet, then it does seem that you're doing the right thing. Good luck!

[dannyhashimotos in reply to Eugenie47]

Hi Eugenie,

That's interesting, so the correct option would be eating gluten and a biopsy for a final diagnosis?

Thanks for you help!

[Eugenie47 in reply to dannyhashimotos]

Yes, if you wanted a proper diagnosis then you would have to have been eating gluten for some time (I believe they usually say 6 weeks) in order to not to skew the biopsy results. If you are IgA deficient, you're still likely to have false negatives on blood tests, however, I understand, even if you're eating gluten. So push for that biopsy if you want a formal diagnosis.

[dannyhashimotos in reply to Eugenie47]

Ok brilliant, thanks for this information. I'm keen to get a proper diagnosis so I will askf or this with my doctor.

Many thanks again!

[Eugenie47 in reply to dannyhashimotos]

Good luck! I personally think it's better to have a formal diagnosis and to be sure.

[Cooper27 in reply to Eugenie47]

I was going to comment, but would only have said the exact same thing. IGA deficiency renders the coeliac blood test useless, and the standard course of action should be to send for a biopsy.

[bookish]

Going back onto gluten just so that you can get a biopsy sounds like a really bad idea, especially when you are feeling so well, because of the amount of gut damage & inflammation that could be caused. Even Dr Marsh (of the Marsh system for testing CD) said you shouldn't go back on, once off. Biopsy isn't 100% reliable anyway. Try a gene test if you really need more confirmation. Best wishes

[dannyhashimotos in reply to bookish]

Never heard of a gene test before. Are these common for celiac diagnosis?

[Cooper27 in reply to dannyhashimotos]

Doctors don't tend to diagnose based on gene tests. 39% of the population has the gene for coeliac disease, while only 1% go onto develop it. Some with the gene don't get CD, but are still gluten intollerant, so it really won't tell you if you're coeliac. The gene test would only be useful for telling you you're in the other 61% and definitely don't have coeliac disease (if that makes sense).

[dannyhashimotos in reply to Cooper27]

So, a negative gene result rules it out but a positive doesn’t confirm it?

[Cooper27 in reply to dannyhashimotos]

Basically, yes. If the gene test is negative, you definitely don't have coeliac disease, but if the test is positive, you could just have non-coeliac gluten intolerance.

The test costs around £95 for the NHS (a coeliac antibody test is <£10) so because of the lack of accurate results, they don't tend to want to pay for it. You can do one privately, but it costs around £270 I think, which I think is a lot if the answer comes back vague...

They are working on a new test that doesn't need the person to eat gluten to be tested, I think it'll be available in the next 5-10 years, if you'd be willing to wait

[dannyhashimotos in reply to Cooper27]

I see, thanks for the info. Private seems to be the only option for me these days as the NHS has failed me continuously on the Thyrod side of things.

[Cooper27 in reply to dannyhashimotos]

I know what you mean, I have thyroid issues too, full sympathies from me! We're more clued up about our own health and bodies than most though, and that has to be worth something

[bookish in reply to dannyhashimotos]

I meant confirmation for yourself - no, GP won't do or be interested in gene testing. Of course, it will only show a genetic predisposition and the genes may not express, but given that you know gluten is an issue for you, it would help you identify which type of gluten illness you have. Have a look at Micki Rose's site purehealthshop.ecwid.com/Gl...

[LuluCops]

I wouldn’t go back onto gluten just because you want a proper diagnosis as like others have said, it’s not always a conclusive test and I know not just from personal experience but from being on the ThyroidUK forum, going back onto it after being off it for so long, will make the symptoms much worse. I really suffered when I had something that had gluten in it, and coming off it again has been harder as things that I could eat before that were ‘gluten free’ I can no longer tolerate!! 🤷🏻‍♀️

I would just stay as you are, if it works, it works!