How gluten free?

[Murphysmum]

Gluten free peeps, Are you all 100% gluten free?

Ie, if you sneak in the occasional gluten containing meal/snack, does it make much difference?

Thanks 😉

[Peanut31]

I’m totally gluten free.

I accepted some toffees off someone the other day not realising it had gluten in it.

several hours later I was paying the price, had severe tummy cramps and bloating and muscle pain in my fingers.

I tested negative for gluten sensitivity, but I made a connection when I had anything with gluten in, I was in agony.

Best wishes

Peanut31

[Nanaedake]

I believe it can have very severe effects if you have coeliac disease and cause more damage to the gut. If you are intollerant of gluten like me, then you might not notice a big effect, just indigestion for me, but there really is no point in being gluten free if you don't do it totally as you are causing irritation to your gut and may be triggering more autoimmune activity which is what you are trying to avoid, I don't know for sure but I have heard it can take up to 6 months to clear the irritation if you get 'glutened'. Perhaps someone more knowledgeable on this will respond?

[Fruitandnutcase]

I’ve been totally gluten free for about three years. In that time I have never knowingly eaten gluten so I have no idea what would happen.

You have to be 100% gluten free otherwise you’re not gluten free. No such thing as ‘almost’ gluten free I’m afraid.

[Murphysmum]

I agree, not so much almost gluten free, just rather trying to work out if I should try it or not. It seems like a lot of hassle for something that has never seemed to cause me any ill effects in the past. I think I will explore other options to get my thyroid working effectively first 😬

[Tasker in reply to Murphysmum]

Hello. I didn't realise that I reacted to gluten until I cut it out, and now as well as a more settled gut, I hardly ever experience the bad headaches/almost migraines that I used to get. Just mentioning it, as it may be that gluten doesn't affect you, or it might affect you in ways you don't realise. But the only way to find out is to try cutting it out!

I love my starchy carbs so didn't like the idea of gluten free, but I have got used to it now and having accidently been glutens a couple of times, and felt ill as a result, I now hardly ever even feel tempted by anything containing gluten.

Good luck, whatever you decide re the gluten.

[Ari3 in reply to Tasker]

U mentioned starchy carbs -what does it mean ? It means potatoes has gluten too? What about certain teas? Are all teas gluten free?

[Tasker in reply to Ari3]

"Starchy carbs" includes lots of different foods, some of which contain gluten and which I miss eating, eg cakes and bread (there are gluten free versions but mostly not as nice in my view!). But over all being gluten free has been easier than I expected.

Not all starchy carbohydrates contain gluten, and I'm sorry if you found my post misleading in that respect. Potatoes don't contain gluten. As far as I know all teas are gluten free.

[Ari3 in reply to Tasker]

Thank you so could you guide me which carbohydrates contains gluten please

[Tasker in reply to Ari3]

Gluten is found in wheat, rye and barley. These can be hidden ingredients in many products so read labels carefully! Also some foodstuffs don't naturally contain gluten but are processed in ways that mean they may become contaminated with gluten, eg oats - so you would need to buy oats that are labelled gluten free.

For full details on gluten free foods consider joining Coeliac UK. Even if you are (like me) gluten intolerant rather than Coeliac, it's the best source of information I know on how to go gluten free.

[Ari3 in reply to Tasker]

How can I join Celiac UK?

[Tasker in reply to Ari3]

Google them and you can join via their website.

[helvella Administrator Thyroid UK in reply to Ari3]

This is a link to their website:

coeliac.org.uk/home/

[SilverAvocado in reply to Murphysmum]

Murphysmum, not every single person with Hashimoto's benefits from being gluten free, the number is something like 70%.

But really the only way to know is to try it out for maybe 3 months, then slowly reintroduce. If you try that you will know whether it has an impact. If things improve a lot, you will probably feel like it's more worth it.

Of course you can start off by cutting down, just to figure out how you will do things, if you rely on a lot of things like sandwiches or cereal you've got to come up with ideas for what to have instead.

[SlowDragon Administrator]

I had absolutely no obvious symptoms. But couldn't walk. Tested twice for coeliac twenty years apart, both negative. Because I was so immobile and had noticeable improvements going gluten free. My endo advised I have endoscopy. This showed showed damage as if coeliac. Yet I had absolutely no gut symptoms of any sort.

Gluten free diet does have to be completely strictly gluten free

Separate toaster, butter, jam, don't share cutting mat etc etc

Wouldn't dream of going back to anything with gluten in

[Murphysmum in reply to SlowDragon]

When you say you couldn’t walk? I am able but I’m a shadow of who I was 6 months ago in terms of my activity level.

I feel weak and shaky and want to sit down most of the time... is that what you mean?

Drs say cfs but my symptoms don’t fit. I don’t get the pem either, just general malaise 🙁

[SlowDragon Administrator in reply to Murphysmum]

I could barely shuffle at slow pace for 10-15 mins, even though thyroid levels appeared well treated.

Completely exhausted. More details on my profile.

[Banjogirl]

I am a coeliac and if I inadvertently eat gluten I suffer badly approx 4 hrs later with stomach and feeling like the morning after the night before. 😟. This lasts for about 24 hrs and wastes a whole day. Gluten sensitivity , whether a coeliac or otherwise is a reaction to, or intolerance of gluten. It is not an allergy and therefore so long as it is not ingested there is no actual need to avoid contact by using separate kitchen items /utensils etc. I never have. Very easy to be g-free now ... so much available in supermarkets. Burgen do excellent bread in free from shelves. Just read backs of labels and double check.

[Nicholajane in reply to Banjogirl]

Hi I have been contemplating going gluten free, but we also should avoid soya and I have noticed a lot of gluten free food has soya ? Any advice on that?

[Banjogirl in reply to Nicholajane]

I just feel everything in moderation. Soya and cruciferous veg may interfere with thyroid but I adjust my NDT according to how I feel best, and I eat both but not in huge amounts. I certainly don’t look for soya based products ie choc / yoghurts when normal choc /yogs suffice.

[SlowDragon Administrator in reply to Nicholajane]

I noticed definite improvement when I cut absolutely all soya including soya lecithin out my diet.

[Clare1971 in reply to SlowDragon]

Hi can you recommend where I get the vitamins . Tried Holland and barrette , boots, but the selenium all contain gluten or soy . Thank you .

[SlowDragon Administrator in reply to Clare1971]

Online is usually cheapest and greatest choice

But local health shop often has much wider range

I have used Solgar vitamin E, with Selenium yeast free

[Clare1971 in reply to SlowDragon]

So looking to buy vit e , vit d ,magnesium ,b12 and I take a soluble vit c each day all gluten free and soy free , plus fluoride free tooth paste .... sorted ..

[Clare1971 in reply to Clare1971]

Plus selenium

[kay_millar in reply to SlowDragon]

Just eat 4 Brazil nuts every day for your recommended amount of selenium. Katikay

[SlowDragon Administrator in reply to kay_millar]

Only if the packet says that the Brazil nuts are grown in selenium rich soil

[credgrave]

I just needed to feel better and took all the advice I was offered. The surprise for me was that several months into it, my joints stopped aching and climbing stairs became really easy. Then I stopped the dairy and a life long problem of acid stomach disappeared and my respiratory problems halved. Then I came off all my allergy and pain meds because I don't need them . A year and a half on, a piece of bread or a bit of feta cheese and I remember really quickly why I stopped. I pretty much live on lots of protein, fruit and veg these days. Occasionally I have a bit of rice which in small amounts doesn't seem to bother me. Everyone say it must take such discipline but in truth its just a desire to feel better. For me its just not worth it anymore. We all have to find our own way through this. Good luck in your journey. all best

[Clare1971]

I wouldn’t knowingly eat gluten as I’m then ill for days , upset stomach , brain fog , lethargic . Not worth it . Was diagnosed last November probably been like this for years .

[Murphysmum]

Interesting. I may try it. I have no gut symptoms at all (except maybe a bit windier than I used to be, sorry tmi 😳). I cannot get to the bottom of my unwellness though. I think I’ll do extra bloods to check everything including adrenals again but maybe gf is something for after my holiday in a few weeks time.

Thanks all 😊

[SlowDragon Administrator in reply to Murphysmum]

Suggest for 2-3 weeks before you go GF you evaluate what you eat each day and look at what alternatives you can have. Then you are more prepared when you do switch

Read ALL food labels carefully. No wheat, barley or rye

[seekingjenna71 in reply to Murphysmum]

I was the same. Didn't think I had any symptoms until I tried it and so many things improved muscle aches, weakness, fatigue, low mood and general lack of interest in anything. Now I feel it if I accidentally eat something with gluten.

Good luck!

[elwins]

found out I had colitis, wheat, barley, rye and corn cause me problems. Also I am about 96% gluten free, I certainly can tell when I have eaten to much gluten. Worth giving it a try.

[Cooper27]

My OH has coeliac disease, and he had very few symptoms - an upset stomach after a Domino's, that was it. When he had his blood test, his antibodies were off the scale, so it is possible to have a severe reaction to gluten internally with few external signs.

You really do need a period 100% without gluten to figure out whether it's a trigger for you. At least a month, but 3 would be better. When you reintroduce it, you may have symptoms up to 3 days later, so be aware of that.

It is tough, but you're only doing it for a short period. It'll pass quickly!

[lizzieb230]

Hi, I had terrible gut problems and was investigated and no coeliac disease found. However, decided to put myself on GF diet and haven't looked back. Meanwhile ended up losing almost 3 stone and became Vitamin D and iron deficient. I always stick to the diet now and read ingredients etc. Don't want to cheat as don't want to go through that again. Took me ages to build my strength up and I am hypothyroid too.