Reintroducing gluten for coeliac test?

[Myalikki]

Hello everyone,

After going gluten free in mid-November 2023 I have today had a blood test request come in which involves a coeliac test. I was tested for coeliac in 2017 too (negative) but didn't know I was being tested for it and had been eating strictly low carb for about 2 years at that point so wouldn't have been exposed to much gluten. So... to avoid a similar pointless test situation, I know I need to reintroduce gluten prior to the test but I can't find any clear guidelines on how much gluten and for how long for the test to be reliable. I've been looking here: nationalceliac.org/celiac-d.... but the idea of waiting 3 months too test isn't appealing as there's a lot of other things involved too.

I tried to call the clinic who are requesting the blood test to ask if we could continue with the rest and return to the coeliac test in some time but I haven't been able to speak with anyone yet.

Has anyone been in this situation before and have some advice on what was sufficient for them, or got some pretty robust guidelines for me to follow?

Thank you!

[SlowDragon Administrator]

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

If you know you are better being gluten free is it worth the agro to get tested

You would need to eat gluten 3 x a day for 6-8 weeks

[Myalikki in reply to SlowDragon]

Hi Slowdragon,

Thank you for the info. I do think I have been a bit better while off gluten but it hasn't been the world changing experience I hoped for, although I suspect I will end up returning to being gluten free after this phase. The test wasn't actually requested by me, it's a knock-on effect of other things but I do feel I need to go along with it and do things properly as my work is affected (in the sense of being chronically unwell and a less useful member of my team/requiring some adjustments) and I think I owe it to my team (and family too) to demonstrate I am doing everything possible and taking every health related exploration available to me.

Thank you as always for your wisdom!

[Sleepman in reply to Myalikki]

I am with Slow Dragon on not testing but perhaps you do part trial. I showed nothing on blood test.

Damage from gluten if you are intollerant/or full ceoliac will likely take more than 3 months to fully heal.

I tried gluten after a year or more and felt ill. Tired washed out as well as gut symptoms for 5 or 6 days. Tried twice a few months apart.

I seem to remember some people on here have gluten Ataxia and it can cause damage to nervous system and they raised concern about my test.

My Mum was tested 25 years ago and could do no more than 2 weeks of gluten she was so ill.

The gastroscopy found damage very low down.

She is also hashi underactive thyroid.

Good luck

[Myalikki in reply to Sleepman]

Hi Sleepman,

Thank you for your reply and sharing your experiences, I hope you're both managing well from being gluten free.

I'm not expecting to test positive honestly; I never seem to have antibodies for things (e.g. thyroid) but sometimes have other markers associated with inflammation and/or autoimmune involvement (e.g. elevated ferritin, slightly out of range white blood cells on full blood counts) as well as being diagnosed with skin and nail psoriasis which are considered autoimmune based. I ate some normal pasta and bread tonight and now have stomach ache but that could be entirely psychological! I guess I'll keep a diary of what I eat and any symptoms to at least help me work things out in my head!

Thank you again, and for the good luck

[Sleepman]

I do have antibodies TPO, so I am different to you.

I had given up gluten a year before finding I was underactive autoimmune thyroid. Bloating and diarrhea, plus puffy face etc. This improved on gf but I was still fatigued.

When thyroid improved, at about 6 months in, I did gluten trial. Got excited after having battered fish and no reaction. Then 2 days later had bread then reacted strongly.

This trial was after I had been given all clear from much delayed gastro visit which tested for gut issues assuming I was celiac.

He said as gf do not get prescribed bread any more and I was better off not on gluten then no point testing.

As you say, if you track how you are on gluten ... then you will likely know before any tests if you can tolerate gluten. It gives me brain fog I think too, Hope you are OK.

I think lactose/dairy can recover after a period of stopping but gluten is for life...

My ferritin was out too in early thyroid issue days.

I am generally good now thankyou. Mum has been good too. She was very ill 25 years ago.

I think she possibly needs T3 and was stopped by NHS. She saw the late Doctor Skinner in the early days but NHS Consultant would not allow T3 or NDT in say 2003.

The wise/kind team on here have really helped me learn.

I take vit D/K spray and B complex based on being too low in past. I track everything with private home blood tests.

[Myalikki in reply to Sleepman]

So glad to hear you're both mostly okay, although your mum having her T3 denied is so sad, even though it seems a horribly common theme here.

I have actually really enjoyed using any energy I can muster on gluten free baking, learning how to combine things to get good results and last weekend even made a batch of brownies packed with ground almonds (replacing normal flour), cacao (for it's magnesium, zinc, potassium and iron), and chia seeds and psyllium husk replacing eggs. Of course I can still eat them, but now I have to think about where to get my gluten from! 😅 At least I can look forward to a GF life if I need it (or most likely, choose it).

[Sleepman]

If you are not autoimmune UAT then maybe it is NOT the gluten that's keeping you fatigued? Your T3 seems low. We seem to have started about same time with UAT.

It is all very complex and when you are not at your best it is a struggle. I am ok with Gluten free. It is not so good when we go out as it restricts some places we can go to eat as a family. I carry a more food with me when away working as quick food is not easy to find.

If you are not too bad on GF diet then going a bit longer GF and working on thyroid T3 levels while you know its not a gluten issue might be a way forward ?

Just saw your post 2months ago with bloods and T3 looks low. Mine (T3)is not great recently (15% range). I have been taking a little "private" T3 since about May (10% range), I have been generally less good recently and my T4 was a bit over range and my T3 still low.

I wrongly reduce T3 in Dec. I had a great summer. Less good since Dec but OKish now after winter lurgies.

I did a finger blood test in October, when feeling well but failed to get results - I struggle to get enough blood out!! ( then busy with work and GP blood test and got out of vit B complex habit for not wanting biotin to affect results ---- uuughhh)

Gluten - hope you are not but just in case a bit about how I have blundered through it.

Thanks for the coao tip. I have been looking for magnesium and do nto like brazil nuts

There are some good posts on here - I search with "healthunlocked" "thyroid" "gluten" the quotes mean it has to be in search. Seems better than the forums own search sometimes!

Most things we cook are easy without gluten

Shop bought GF cakes seem poor mainly and have a very long ingredients list. GF nut and fruit bars and dark chocolate are my quick treats and fruit and lots of good ice cream

I have got across to our close friends now, I have given up on cakes generally as its healthier for me. (However a home baked rhubarb cake made from almond flour was devine!)

Since diagnosis I have dropped from 99 kg to 88 kg. I do not eat till lunch and try to not eat after 7/8 PM. I was prediabetic but now am OK.

I do not eat bread anymore, I have given up even on wraps. (they have long ingredients lists) I have been playing/ failing with maize floor to make tortillas but apparently mexican floor has chalk/lime in it. Pancakes with corn floor seem OK and yorkshire puds. I have cut out pasta mostly and we eat lots of rice/potato and tortilla chips. I have never eaten as many nuts !

GF soy sauce and oyster sauce etc for . Difficult to eat out but we have found a good proper Chinese restaurant that have a few GF dishes.

Indian food is mainly clean. I have started making daals recently.

I have found bombay mixes a bit hit and miss and have given up now.

Chickpea flour batter with water left for an hour makes a good frying batter. I adore good fried fish.

I am going to try gf oat porridge again as I was letting things settle down.