Should I get tested for Gluten/Coeliac Evaluation with Genetic Test? Any one done it?

[Gilbo72]

So I am about to order my first private, comprehensive Thyroid test from BlueHorizons, and I came across their Gluten/Coeliac Evaluation with Genetic Test.

I have suspected for many years I had a gluten intolerance, several years before I developed Hashimotos. I now am aware of the gluten/autoimmune connection.

Many years ago (pre-Thyroid problems) I had a conversation with my then (lovely) GP about getting properly tested for Coeliac etc. At that time I was already avoiding gluten because of digestive problems. He said to me, I would need to eat gluten everyday for 6 weeks for the test to be effective, and if by eliminating it you are seeing improvement, why not leave it as that, rather than put yourself through six weeks of hell, for something that may or may not show up.

So that is what I have done for the last 15 years. However not having a medical diagnosis at times has made me feel like a bit of a plum when I ask for GF alternatives, and has sometimes made me doubt myself and occasionally fall of the GF wagon because I tell myself I'm not really sure I have a problem!!

Anyhow, the test on the website also says I should eat wheat for 4 weeks before the test. This is quite off putting. I am going on holiday for 2 weeks, so it would be easy to do, but can I face all the symptoms??

Has anyone else been here, done that? Got any advice?

as always many thanks...

[SlowDragon Administrator]

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

I have Hashimoto's, never had any gut symptoms. Two negative coeliac blood tests twenty years apart. Immediately after 2nd negative test, endoscopy revealed very likely coeliac. NHS DNA test said coeliac unlikely.

Regardless of all that, going absolutely strictly gluten free was a complete revelation. Many with Hashimoto's find the same. Leaky gut and Hashimoto's seem almost inevitable.

More info on my profile

[Gilbo72 in reply to SlowDragon]

Hi SlowDragon,

so I'm guessing you had to eat gluten before the tests? How was that?

why did you have the tests?

I know I shouldn't eat it and I certainly avoid it. But sometimes I wish I had that definite diagnosis. But then I risk not having a diagnosis so will not be better off. x

[SlowDragon Administrator in reply to Gilbo72]

If you read my profile, it's all in there.

[Fruitandnutcase]

I went totally GF about four years ago when I was diagnosed with inflammatory arthritis. I already had Graves Disease and another couple of autoimmune conditions and decided it was time to try and do something constructive about it.

I wasn't tested for Coeliac before I started but I knew my thyroid antibodies were pretty high as I had done a blood test for them and I figured out if I could reduce them by going GF that would be a good start. I originally did it as an experiment for three months but the results were so amazing I’ve never knowingly eaten gluten since.

I joined Coeliac UK for their handbook of gluten free foods which was well worth the cost of the annual subscription.

A couple of years ago my rheumatologist suggested I be checked out for Coeliac but I wasn’t prepared to eat gluten again just for a label. Something makes me think the definitive way to know if you are Coeliac is to have a biopsy done rather than a blood test but I may well be wrong on that.

I don’t let it bother me that I haven’t been checked out. I’ve got a few friends who are Coeliac and I asked one of them if they get annoyed with people like me who have made a lifestyle choice and he said that it was because of people like me that Coeliac sufferers now have the choice of foods they have so I don’t let it bother me. If anyone asks I just say i went GF to reduce my thyroid autoimmune antibodies, it worked and I’ve never going back. If anyone doesn’t agree or doesnt like it - well, that’s their problem. It might not work for everyone but it works for me.

[Rmichelle]

Hi there I am Celiac and had 2 blood tests that both confirmed celiac and also the biopsy, previous to that I did not know about gluten and the effects it has on the body, I was in a lot of pain and feeling sick so I did not know at the time what was wrong until gp said he would send for blood test and endoscopy, I did carry on eating gluten so it was no different for me as I did not associate the pain with food- lol I was clueless 😁

I have been gf and soya free for a year now and my problems have eased immensely🙌 I am very strict with food and cross contamination, I was gluten poisoned a month ago by a cuppa with a digestive biscuit in it& a mix up of cups!! Oh boy I was soon Ill for 2 days!!

I do not object to anyone who wants to feel well, just because I'm celiac I do not feel angry that other people may want to be gf to feel good, its a free world, if something works for you why not!! I think if you know whether gluten upsets you and you feel better without it- don't eat it, carry on as you are, you do not need a test to say you are!! Good luck.🌟🌟

[crimple]

I was diagnosed intolerant to wheat by a hospital consultant 20 years ago. I just had to do an elimination diet. Once the hashi's started \I went Gluten free. I felt a big difference. So I don't have a formal diagnosis such as coeliac but many Hashi' s patients are proven sensitive to gluten just by eliminating it from the diet. I should stick with what your previous doc said. Maybe ask for a note on your medical files that you have feel better without it for X number of years.

[Hashi-hacker]

Agree with all of the responses above. There is growing evidence for non coeliac gluten sensitivity, so the bottom line is that if you feel better gf, then stay gf regardless of testing. I have both my daughters gf and neither of them have the coeliac diagnosis (but have the genes and a coeliac dad and hashi's mum), so I totally understand your 'imposter' thoughts and feelings for not being a 'proper' coeliac. I have just been reading Dr Micheal Ruscio's 'Healthy Gut' book and he's essentially saying the same. Good luck x

[Gilbo72]

Thank you for all your responses! It has been a great help and makes me feel not alone in all this! GF all the way then. X