Gluten free

[Rosie2m]

Hi, for those of you who have gone gluten free with Hashimoto’s how quickly did you feel a difference? I’ve been gf for almost a month and genuinely feel NO different at all... I was hoping I would’ve felt a little something by now? Xx

[Lalatoot]

It can take months and months.

[Caroline888]

Hi Rosie2m

I have been gluten free for about two years. Initially it was in an attempt to reduce my very high antibodies and it has reduced them substantially though they are still high.

Almost immediately after going gf, I found I had far fewer stomachaches which previously I had every day.

My last three blood tests have shown a continuous reduction in antibodies. However if the next one shows an increase in antibodies instead, I might consider giving up being gluten free. It is very restrictive, especially since I am also a vegetarian.

I might consider a stomachache a small price to pay for an occasional delicious cheese scone or slice of hot buttered toast!

If the decline in the number of antibodies continues though I’ll probably stick with it.

Hope you start to feel the benefit soon.

Best wishes

Caroline

[Rosie2m in reply to Caroline888]

Thanks Caroline,

I failed epically today whilst out for a meal with the family, the restaurant we were at couldn’t cater for strictly gf free without risk of contamination and where I’ve felt no difference I just cavesd and chose what I actually wanted instead of what I could ‘have’ mainly because I’ve felt no difference at all since starting. I’ve found it extremely difficult and costly with time and money especially working with two young children and feeling so rubbish as it is, if I felt any better I’d be motivated to continue. I shall restart again tomorrow but I need to hear that it’s really worth it. When I looked online it said most people feel a difference of some sorts within a few weeks... xx

[humanbean]

I think it varies. I used to have a very serious problem with controlling my temper. It took just five days of being gluten-free for it to disappear, never to return. (Although if I took up eating gluten again I think it might come back!) I had no idea before it happened that there was any connection between gluten and my temper.

I also reduced my problem with ataxia (poor balance and staggering or tripping over for no reason) by giving up gluten, although improvement was much slower than the temper problem. I never recovered completely. I have other health conditions unrelated to gluten which also affect my balance.

My research on the subject suggests to me that I suffer from gluten ataxia which is caused by gluten causing inflammation within the brain, specifically the cerebellum.

medicalnewstoday.com/articl...

I had testing for coeliac disease about five years before I gave up gluten and it came back negative.

I've just remembered - giving up gluten mildly improved my absorption of iron.

[Rosie2m in reply to humanbean]

See if I noticed a difference it would make it so much more inspiring to continue, it’s so hard to stick to especially when eating out! I’ve found myself eating so much gf cake when out it’s unreal because there are no other options! I’m glad it helped you so positively, I’ve never heard of gluten ataxia, I didn’t even know it was a thing xx

[Caroline888 in reply to Rosie2m]

You’re so right about the gf cakes. Until I went gf I never ate cake as not really keen on sweet things. However now when out shopping if I feel the need for a bite to eat, gf cakes seem to be the only thing on offer in most cafes. And that’s if you’re lucky!

I try to remember to take a suitable snack in my handbag but more than once have forgotten and had to choose between cake or going without🙁.

Thank goodness coffee is gluten free!

Best wishes

Caroline

[Rosie2m in reply to Caroline888]

Honestly it’s ridiculous, I went out on Friday and was in a cafe which made everything fresh on site, pastry’s/bread excetra and they had 1 gf food on offer which was a chocolate almond brownie... admittedly it was nice but it really wasn’t what I’d have chosen given any other choice! I try and avoid car dry big things around with me because I tend to eat for the sake of it but maybe I should start! Xx

[Caroline888 in reply to Rosie2m]

Absolutely my experience🙁

[Jazzw in reply to Rosie2m]

I find airports the worst for catering for GF. About the only things you can find are GF chocolate brownies and the odd biscuit.

I’m on the fence with GF and Hashi’s. If you’re finding it makes no difference, then don’t do GF. If not done carefully you end up seriously restricting the range of food you’re eating and can end up with other nutritional deficiencies instead.

Of course, one of the quickest ways to find out if it’s made a difference is to start eating it again... If you have an bad reaction to eating something with gluten in, then chances are it was affecting you more than you knew.

I find it can take up to 12 hours for a reaction to present itself—but when it does, there’s no mistaking it. So sadly I have to carry on GF-ing.

[Arlie123]

Hiya, I am three weeks strictly strictly gluten free (have done it off and on before) and not sure I am feeling any different either! I do have very high anti bodies though so will be testing soon to see if they’ve reduced. It is very, very hard though so I feel your pain so much! I am also trying to be strict dairy free (think I am also lactose intolerant) but it is near impossible to do both - though I live in London so restaurant choices are pretty good here. But just wanted to say good luck!

[Rosie2m in reply to Arlie123]

Hey Arlie123, I totally ruined it today 😩 it’s so hard and frustrating especially when out and about! I’m also soya free as much as possible but doing both together massively limits food as I imagine being dairy free does!! I really hope it helps you, my antibodies were raised in the 300’s somewhere, no idea if this would’ve helped or not xx

[SlowDragon Administrator]

I am surprised at lack of choices

I usually find plenty to choose from. There’s nearly always a good salad...or fish or meat plus veg or salad

Morning coffee is trickier.... nuts and raisins or apple, pear etc

I was astonished to feel noticeably different after just 24 hours. But improvements continued on for many many months. Brain fog was last to fade

BUT I was on high dose levothyroxine for many years before I tried gluten free diet

As I couldn’t walk, I had gluten intolerance confirmed by (private) endoscopy ...despite 2 negative coeliac blood tests

It was the low vitamin levels that made me suspect gluten

I had absolutely zero gut symptoms

TPO antibodies have dropped slowly at each subsequent test (I always use Medichecks)

Endo and GP were fascinated to see this ......as NHS only test antibodies once they never see this result

[Rosie2m in reply to SlowDragon]

@slowdragon, love that you always reply!! I honestly feel no different after almost 4 weeks 😩 where I live i have really struggled to find gf alternatives! I Will try again but it’s so hard, and also frustrating. I don’t suppose it helps I’m not on a decent level of levo xx

[SlowDragon Administrator in reply to Rosie2m]

Yes I think it definitely makes it harder at this stage In only low dose levothyroxine ....but may help in long run to have gone gluten free as early as possible

[Buddy195 Administrator]

It took 3 months for me to really notice the difference Rosie2m, so hang in there; hoping you will see a noticeable benefit.

[Peanut31]

Hi

I’ve been GF since 2017 as I have Hashimotos and underactive thyroid.

I didn’t notice a difference at first, but started to notice I was less bloated and didn’t have as much muscular pain (arms, fingers) and didn’t have that constant brain fog either.

At first I went mad on replacing all my cakes, biscuits with GF ones, however, they are full of sugar and rubbish to make them taste good.

I now stick to fresh foods, I don’t eat GF bread unless I make some which is the keto bread rolls, nor cakes.

When I go out I have steak and salad, fish and salad, I keep it as simple as possible.

Breakfast: fruit, strawberries, raspberries or scrambled egg and bacon.

Since also doing keto I’ve felt so much better.

I was glutened a few months back and oh my word I felt absolutely dreadful, tummy ache, bloated and absolutely foul mood, took me a few days to start feeling better.

Best wishes

Peanut31

[MichelleHarris]

Hi Rosie2m,

Ive been Gluten, Diary free for several months and didnt think I felt any difference and then I realised that all the mild daily stomach aches I’d had all my life, that I just took for granted, were gone! Also my 10 plus bowel movements a day were massively reduced. Good luck x

[Gcart]

I’ve got a waist back , even though I only had 2 slices of bread a day .

My teeth have improved, no stomach pains daily . Bowel probs , unsteady when walking. ( now much improved)

No , sometimes I could ‘murder’ a slice of toast ......... but won’t .

I manage when out with salads , meat, fish ( if you eat those )

Jacket potatoes, chips (if hungry)

I buy no GF products and just stick to simple meals at home .

Wouldn’t go back now . I’ve been 2 years better .

Good luck if you try

[Hidden]

Hi Rosie

I have Hashimotos and on NDT as well as gluten free for over 6 months now

However, my main symptom of muscle aches, for which I would dearly love a cure for, has progressed

So, may well return to gluten, as I did love toast and strawberry jam!

Good luck

Alps Holiday

[Rosie2m in reply to Hidden]

Oh that’s frustrating isn’t it! I love bread so find gf so hard with all the rubbish gf alternatives lol xx