How strict is strict? 🌾: Hello again! I'm about... - Thyroid UK

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How strict is strict? 🌾

90 Replies

Hello again!

I'm about to start going gluten free - I figure I'd ease myself into with and have a deadline for being totally GF. (I will only fail if I try going cold turkey!)

But I was wondering how strict is strict? 🤔 Do I need to give up oats? I know they can be tolerated by some with coeliacs so can they stay?

I know I'll need a separate toaster and baking trays. What about utensils?

Thanks all. 🙂

90 Replies
Mostew profile image
Mostew

You can get gluten free oats .

In supermarkets

Good plan to do it slowly . Lots of good gluten free stuff now

I make a really nice bread . Best toasted 3 times so it’s well done

Nutri. planet fermented buckwheat bread .

in reply to Mostew

I'm just desperately trying to hold on to my oat milk!! 😂 I don't like the other non dairy milks so I'll be gutted to lose it entirely.

Mostew profile image
Mostew in reply to

I doubt that should do any harm . So little actual oats in it

I would eliminate all other possible gluten Gradually . . Leave milk till last then if you are still having symptoms , try a week without milk

Maybe if worse comes to worse , try making it ?

Cooper27 profile image
Cooper27 in reply to

Oat milk isn't GF, unfortunately its widespread roll-out in coffee shops meant my partner had to give up milky coffees from the coffee shop, due to cross contamination risk (he's coeliac).

Some coeliacs can't tolerate the avenin in oats, which also rules out the GF oats for them. It's very individual though. I would suggest in your case that you keep them in for the first little while, to make the transition easier, but that you eventually remove them for at least a month to see if you react to them at all.

Jazzw profile image
Jazzw in reply to Cooper27

Yep, I’m intolerant to avenin. I was in denial about it for ages as I didn’t want to have to give up yet another food 😢 but I end up with awful mouth ulcers if I have oats, even GF oats.

Wish they hadn’t rolled out oat milk in coffee shops. But on the plus side it’s saved me a fortune.... :)

Lillywing profile image
Lillywing in reply to

My daughter is gluten free uses all the alternative milks. Including oat. Plus Amiso gluten free oats for porridge taste like normal oats. You could make your own oat milk too.

Pumpkin04 profile image
Pumpkin04 in reply to

I'm the same love oat milk. Holland and Barret glebe farm do gluten free oat milk. They have an offer on currently

WeeN profile image
WeeN

Hi, oats are already gluten free 😊

FinnishKat profile image
FinnishKat in reply to WeeN

Yes and no. I’m coeliac so I can only eat pure or gluten free oats. Normal oats may be cross contaminated by gluten so for very sensitive ones, like people with coeliac, they are a nono.

Baobabs profile image
Baobabs

All or nothing is the best way to go! To avoid temptation keep well away from hot baked bread shops. I have found M&S and Sainsbury's do really good gluten free bread and wraps. You need to be careful with oats as they can be processed with wheat products. Be safe and always choose organic ( quite easy to purchase now) and ensure the pack states gluten free. I would say so long as cooking utensils are washed thoroughly they should be ok. It really is worth the persevering. All the best on your journey!

Ruthi profile image
Ruthi

Strict means strict! Without that you will never know if it works.

You could make your own GF oat milk from GF oats. Soak overnight, whizz and strain in the morning. I make my own nut milks all the time.

in reply to Ruthi

I've tried making my own and it went horribly wrong and it tasted grim. 😂 I should probably try again but it out me right off!

Ruthi profile image
Ruthi in reply to

Like anything, it can take a few goes, but its worth it!

Baobabs profile image
Baobabs in reply to Ruthi

Wow, great idea, never thought of this!

Baobabs profile image
Baobabs in reply to Ruthi

I will never know if gluten free works for me. I just do as I’m told!

Ruthi profile image
Ruthi in reply to Baobabs

It is supposed to low antibodies. Or, in my case, cure IBS

NWA6 profile image
NWA6 in reply to Ruthi

But antibodies aren’t an issue?? GF helps the digestive system and so helps absorption of Vits/minerals from diet and utilising supplements. Which in turn helps the endocrine systems work as optimally as they can.

Ruthi profile image
Ruthi in reply to NWA6

Antibodies are an issue if you have Hashimotos.

NWA6 profile image
NWA6 in reply to Ruthi

Hey Ruthi. I wish I could tag Greygoose on my phone as she words her replies better. But no, antibodies are not an issue for Hashi’s. They are only an indicator that you have Hashi’s and are not damaging in anyway.

in reply to NWA6

greygoose 🙂

NWA6 profile image
NWA6 in reply to

Thank you 😊

in reply to NWA6

You're welcome!

Ruthi profile image
Ruthi in reply to NWA6

Antibodies attack the thyroid, the more you have the faster your thyroid will be destroyed. You can't halt the process by going GF, but for some it significantly reduces the antibody levels, and therefore the progress of the disease. That is my understanding of the process, unless science has progressed in the last year or two.

I don't have Hashi's, my thyroid just died.

NWA6 profile image
NWA6 in reply to Ruthi

So no that’s not the case. The thyroid is attack by the ??? (Can’t remember) and thyroid peroxidase and thyroglobulin leak out. So the body creates TPOab and TGab to clear up these enzymes which only belong in the thyroid. They are not harmful, they are doing their job and have no relevance of health (apart from as an indicator, a reason for Thyroid failure/symptoms)They will rise and fall throughout a lifetime.

greygoose profile image
greygoose in reply to Ruthi

Contrary to popular belief, it is not the TPO/Tg antibodies themselves that attack the thyroid:

"When lymphocytes infiltrate the thyroid gland, mistakenly taking it for a foreign bacteria invader, they damage the thyroid gland and release thyroid peroxidase &/or thyroglobulin into the blood stream. These don't belong outside of the thyroid gland so antibodies are developed to mop them up.

The antibodies are a result of the attack on the thyroid gland, the antibodies don't cause the attack."

thyroiduk.org.uk/tuk/about_...

Ruthi profile image
Ruthi in reply to greygoose

Ah! Interesting greygoose! So the question is, what prompts the lymphocytes to invade the thyroid?

greygoose profile image
greygoose in reply to Ruthi

Exactly. And, I've never found an answer to that question. A lot of supposition, but not hard facts.

NWA6 profile image
NWA6 in reply to greygoose

I think it makes complete sense that it’s stress and infection. Some of us will be predisposed to a autoimmune response and as we can’t avoid stress it’ll ‘switch on’ at some point. My fight/flight/freeze was initiated in childhood and it can take a long time for the thyroid to fail and pregnancies just threw me over the edge. My sisters was a little different. She had the added bonus of infection, serious throat infection and Helicobacter pylori.

greygoose profile image
greygoose in reply to NWA6

Well, that may be true for some people - probably was for me - but I really don't think it's the same for everyone.

NWA6 profile image
NWA6 in reply to greygoose

Yeah I think it is. I can’t think of any other reasons and some people don’t know they’re stressed or that their environment/lifestyle is going to cause an autoimmune reaction.

greygoose profile image
greygoose in reply to NWA6

Well, we'll have to agree to differ on that one. :)

NWA6 profile image
NWA6 in reply to greygoose

No worries but what else could it be?

greygoose profile image
greygoose in reply to NWA6

That's what we just don't know.

papillon53 profile image
papillon53 in reply to NWA6

I thought I'd read that mercury can also be a cause.

Baobabs profile image
Baobabs in reply to Ruthi

Yes, however my test for gluten was negative but taking into consideration all I have read it would seem a very good idea to go gluten free. GF has never really affected my antibody levels and I don't appear to have symptoms from gluten. Personally I believe gluten is pure poison.

Ruthi profile image
Ruthi in reply to Baobabs

Well, I think that might be an extreme view. But its certainly true that many people don't tolerate or digest gluten, and other gliadins for that matter, very well.

You do know it can take a year for antibodies to drop?

Baobabs profile image
Baobabs in reply to Ruthi

I have had Hashi's for four years now and antibody variation has been negligible. Lowering antibodies will not prevent the thyroid attack and destruction eventually.

Ruthi profile image
Ruthi in reply to Baobabs

The outcome is inevitable, unfortunately. But the rate of decline is affected by antibody levels.

I gather not everyone's antibodies fall when they go GF.

Baobabs profile image
Baobabs in reply to Ruthi

Interesting subject, I'm not sure how we tell the rate of decline? Some thyroids seem to shrink? I know mine hasn't but it's function has definitely declined over the years as I have needed to increase meds.

Baobabs profile image
Baobabs in reply to Ruthi

I would guess if you have IBS you will see a significant improvement from going GF.

Ruthi profile image
Ruthi in reply to Baobabs

Yes, I did see an immediate improvement. Its ten years down the line for me and I can now tolerate small amounts of gluten. And interestingly I can cope better with bread in France than here. I swear they put some sort of rubbish in it here!

Baobabs profile image
Baobabs in reply to Ruthi

Most bread in UK is one of the most processed foods available. I have even found gluten free bread to be full of unpronounceable ingredients. I just don't eat bread ever. As well as being GF I eat as much organic non processed food as possible and it is this regime that keeps my health above water so to speak.

bookish profile image
bookish in reply to Baobabs

Same here, I just don't eat any grains/bread/flour. All sorts of rubbish in GF food.

Baobabs profile image
Baobabs in reply to Ruthi

I believe French bread, particularly baguettes have few ingredients and no fillers, that's why they bake several times a day as it has no 'life enhancers'. You have to bear in mind though that this sort of bread probably has little nutrient value.

Ruthi profile image
Ruthi in reply to Baobabs

Oh true, but I don't spend that much time in France and the rest of the food is lovely, and cooked from scratch.

I basically eat Paleo, but not terribly strictly. I avoid grains, sugar, processed food and cook from scratch almost all the time. I agree, GF products are rubbish!

helvella profile image
helvellaAdministratorThyroid UK in reply to Baobabs

I think it is somewhat more subtle and complex. Last time I tried to check this out (for the sake of having a useful and accurate link), I found that a certain proportion of pea flour was allowed! (Though I suspect that is rarely, if ever, actually added.)

3. Relative to the weight of the (wheat) flour used will contain no more than

a) 2 percent broad bean flour;

b) .5 percent soya flour

c) .3 percent malted wheat flour

cooksinfo.com/french-bread-...

This is, simply what I could find and am in no position to verify further. (I see they say "bean" flour rather than the "pea" flour I thought I remembered.)

Baobabs profile image
Baobabs in reply to helvella

I think I read somewhere that French bread contained some maize flour?

helvella profile image
helvellaAdministratorThyroid UK in reply to Baobabs

That I have not seen!

greygoose profile image
greygoose in reply to Baobabs

Some does, yes. But not all of it. It's called maize bread. :)

Baobabs profile image
Baobabs in reply to greygoose

Blimey! What do I know about French bread? Few ingredients? I promise to neglect to comment next time.

papillon53 profile image
papillon53 in reply to helvella

I think it's lupin flour

papillon53 profile image
papillon53 in reply to papillon53

I live in France and can tell you that even small local bakers use flours with loads of additives. Unless you manage to buy an organic baguette. In the past I only bought gf organic artisan bakers' bread, however during lockdown started making my own gf sourdough bread with moderate success.

HappyHealthyGirl profile image
HappyHealthyGirl in reply to Ruthi

Unfortunately most processed bread, even in France, contains milk powder! So if you have a dairy allergy that will get you.

If you ask stores (obviously not small French artisan patisseries!) for a list of breads that are suitable for Vegans, that will exclude any containing dairy.

I guess if you specified Gluten Free bread suitable for Vegans, that should give you a good idea, but you can never be too wary of cross-contamination. :=/

Ruthi profile image
Ruthi in reply to HappyHealthyGirl

That's interesting, I'm not milk sensitive, but my daughter is, and she lives in France.

Redlester profile image
Redlester in reply to Ruthi

Only some? how about all kinds of rubbish!!! It is almost nigh on impossible to buy a loaf in the UK that isn't made with soya flour and if you read the ingredient list it would make you shudder - not too many ingredients in there your granny would recognise (the Jamie Oliver test). My sister lives in France, and although GF herself, she buys regular bread for the rest of the family and swears it is better quality and I think she's right.

Arlie123 profile image
Arlie123

Oats are gluten free (avenin is a protein similar to gluten) but it’s potential cross contamination in factories that means strict gluten free people need to get oats advertised as gluten free.

I’m pretty sure Oatly doesn’t guarantee no cross contamination but it looks like Plenish is totally gluten free.

ocado.com/products/plenish-...

in reply to Arlie123

That's heartening! Thank you!🙂

Baobabs profile image
Baobabs in reply to Arlie123

Aldi oats are definitely gluten free. They have their own organic farms so I would guess these are fine and not subject to cross contamination.

Thank you all!

I should clarify I don't have coeliacs. The results came back as 0.6 (0.1 - 3.9) but I find if eat too much then I get bloating and nausea so I have a sensitivity and I'd like to see if it makes a difference to my hypothyroid symptoms

I think I will leave oak milk until last but it's probably best to cut it out. 😭

Cooper27 profile image
Cooper27 in reply to

We only mention coeliac because they're the definition of GF :)

At the end of trying strict gluten free, you might find you are more tolerant - I know some coeliacs even, who share toasters and baking trays without any issues!

Just be aware gluten can affect us in ways we don't always expect. For months I was convinced I had no issue at all with gluten (I was still gluten free for my coeliac partner though). It was only after a few work trips away, where I'd eaten gluten to avoid making a fuss, I noticed every time I came home I had dermatitis on my shins. Sure enough, I'm gluten intolerant.

in reply to Cooper27

Yes, I was using the GF 'rules' as the gold standard!

I think going all in is the only way forward here and maybe I will see the end of this annoying blocked ears thing I have that is seemingly unconnected to anything at all...! 🤞🏼

Thanks for all your help. 🙂

grumpyold profile image
grumpyold in reply to

I've been gluten free for months now but I still have the blocked ears thing. It's called Eustachian Tube Dysfunction I believe.

B****y annoying isn't it 😒. Nothing seems to help. I did find some eustachian tube exercises on-line but they haven't helped, nor has the Otovent balloon device.

Ho hum, all part of the merry go round of thyroid problems. Deep joy.

Good luck with the gf.

in reply to grumpyold

Thank you.

Yes, there are days when I find it intolerable and others when I barely notice it. I've usually always got a runny nose too. I've had a recent asthma diagnosis too and the asthma nurse said that the cells in your nose are the same as your chest so if you have nasal symptoms your nose is inflammed and therefore so are your lungs.

I was so hopeful but inhalers have not relieved the ear symptoms.

I've also read ear/nose symptoms can be an indication of lactose intolerance/sensitivity but I didn't see a noticable change in my symptoms when we were dairy free (for about 18 months!) So I'm learning to just live with it. 😭

bookish profile image
bookish in reply to

Ear and nose symptoms could be dairy (mine were) but can also be gluten. Hopefully you will notice an improvement x

Baobabs profile image
Baobabs in reply to Cooper27

I always think of the unseen effects, possibility of leaky gut, crossing the blood brain barrier and this is enough incentive for me to be GF.

Cooper27 profile image
Cooper27 in reply to Baobabs

I think Leaky gut is possible with any foods we eat, so I don't think it's a reason to fear one individual food group, it's more of a reason to work on overall gut health and to find your own personal triggers. Having said that, I don't think a gluten heavy diet is very good for anyone, I weep a bit at the thought of your typical (government idea of a) "healthy" diet of cereal, sandwiches and pasta, and how that's seen to be varied.

Baobabs profile image
Baobabs in reply to Cooper27

You may be right as many foods are 'contaminated' in some way, however gluten is known to be a key offender. Yes the government's idea of a healthy diet is an interesting one and not one I can subscribe to. We have to remember that folk in the government are also balancing up general support for the economy and perhaps watching their stocks and shares in a variety of food companies?

Cooper27 profile image
Cooper27 in reply to Baobabs

Do you mean contaminated with gluten, or general contaminants?

I ate strictly gluten free myself, due to partner's coeliac diagnosis, but still had issues with leaky gut because of other food issues and poor overall gut health.

Baobabs profile image
Baobabs in reply to Cooper27

All. I'm not sure how you determine if you have a leaky gut?

Cooper27 profile image
Cooper27 in reply to Baobabs

I had candida and various food intolerances and skin issues, which point to leaky gut.

Tuscansun profile image
Tuscansun

Gluten free means gluten free - it doesn’t mean less gluten.

Why do you think you cannot go gluten free? Do you feel addicted to certain types of food?

I believe changing diet and food choices is a mindset. If you persuaded yourself that giving up gluten is a sacrifice and you will miss it dearly - then you will struggle to go gluten free.

If you believe that gluten is horrible for your body and your health - you will have no problems with gluten free food choices.

in reply to Tuscansun

Goodness me! You've made some large assumptions here! Who ever said anything about food addiction? It's a little too early in the morning for such a patronising response.

If you'd bothered to read the thread instead of just the title you'd see I was asking specifically about oats.

Thanks for your time though! 👍🏼

NWA6 profile image
NWA6 in reply to

I think Tuscansun reply was fair enough. This SM way of communicating can seem so blunt at times, combine that with early morning and voila! But no, for me it read as helpful and a positive way to look at the situation. HTH 🤗

in reply to NWA6

Because the assumption was that I felt I couldn't go gluten free and that my mindset was it would be a sacrifice or I was addicted. In fact it's quite the opposite; I was struggling to eat gluten more than once a day in the run up to the coeliacs test.

Oat milk is the only sticking point for me and If it will improve my health I won't hesitate to cut it out.

Anyway; you're right. Forums can be impossibly hard to read tone so perhaps I just didn't get enough sleep!

Tuscansun profile image
Tuscansun

Had no intention to patronise you at all - sorry that you takes it that way.

But the thing is if your immune system reacts to gluten even tiny amount will trigger the reaction.

nouvelleespoir profile image
nouvelleespoir in reply to Tuscansun

You are so right about mindset. Sacrifices hurt, even if only mentally. Letting go for a better future it's empowering. It's a truth I wasn't ready for either until I made an empowering decision for myself.

Tuscansun profile image
Tuscansun in reply to nouvelleespoir

I watched Tony Robbins on YouTube recently - and he said that when people think about objectives in category of Should - I should do this or I should do that - they rarely see the results. However, when something switch from Should to Must, most of people achieve those “musts”.

Redlester profile image
Redlester in reply to Tuscansun

or even better "I want to"

Tuscansun profile image
Tuscansun in reply to Redlester

That’s the best 👍🏻😊

Redlester profile image
Redlester in reply to Tuscansun

I must try to do it more myself - I find myself saying "I must" and "I should" vey often - I'm sure "I want" would be much more motivating.

Jazzw profile image
Jazzw in reply to Tuscansun

I don’t think your reply was at all patronising by the way - I think generally speaking many of us are a bit “addicted” to carbs (or rather, the glucose hit we get from consuming them) and I’ve observed that many have an emotional reaction to the idea of never being able to eat wheat-based bread again.

No one ever binged on broccoli. I think if someone told me I could never eat broccoli again I’d be fine with it. 😂

NWA6 profile image
NWA6 in reply to Jazzw

Lol at ‘never eating broccoli again’ 😂 so true. We are addicted to carbs. The sugars are just pure heroin for me 😂 So I cant even do GF because I have no control to stop at a slice!

Tuscansun profile image
Tuscansun in reply to Jazzw

Thank you! It reflects my own experience - food choices are emotional choices in many cases. And we all have our “weaknesses”. When limitations are put on us externally, we can feel our freedom of choice was affected. When limitations are our own choice, it’s much easier to stick to them.

I don't drink cow's milk. Otherwise that would the obvious solution! 🙂

I'm not coeliac so for me GF is a choice as opposed to a need so I think having a deadline to be GF will work best for me. Gives me time to get my head around it and allows for accidental gluten ingestion!

bookish profile image
bookish in reply to

Hi, I don't think I'm coeliac but with skin and neuro symptoms what I gave up as a choice turned out to have been a need - a long overdue need. Now truly GF and dairy free. Be as strict as you can. I tried bought GF but realised I was reacting to corn (which of course you then eat more of than normal) as well as oats (even GF oats). Best of luck, I hope it helps you as it has me

That's good to know. I started the thread because I didn't want to have to give up my oat milk. It's literally the only thing I'll miss going GF!

Jazzw profile image
Jazzw

That’s a great idea—except some people are intolerant to casein rather than lactose. For some, the only option is to go dairy free.

Amandaj51 profile image
Amandaj51

All or nothing I would say. I touch no gluten as it immediately effects my IBS. I’ve been doing paleo ketogenic diet for two months which is gluten free and feel amazing. Good luck!

BeePurple profile image
BeePurple

I have never been tested but just know gluten makes me feel awful. Even gf oats or bread products give me stomach issues so most of the time I avoid those too.

It is really surprising that gluten is found in so many foods such as sauces and vinegar.

I have had more energy, fewer nasal congestion problems and improved digestion from going gf so I do recommend it. Good luck 🍀

papillon53 profile image
papillon53

I thought lactose free didn't help as casein was the problem.

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