What’s the deal with gluten?: Hi All I just... - Thyroid UK

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What’s the deal with gluten?

Joanne82 profile image
25 Replies

Hi All

I just wanted to get your opinion on gluten. Ive read that with Hashimotos you should go gluten free. I’ve done so about 2 months but now I’m starting to read conflicting information and some are saying it doesn’t make a difference. I’m happy to stay gluten free but the rare time I think I’d really like to have a tiny bit. How harmful would this be? I’m assuming that by being GF it would help reduce antibodies through less inflammation? Just curious!

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Joanne82 profile image
Joanne82
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25 Replies
pandv profile image
pandv

Evaluate the benefits yourself, the internet is full of opinions and contradictions. Some cod science some backed by peer reviewed papers. For me the proof for ‘you’ or ‘me’ is in the pudding. I was sceptical but cutting gluten and other dietary changes improved my life immeasurably. For others I’d imagine the results will be on a scale from no impact to life changing. Costs very little to try for a few weeks - review the situation then weigh up the benefits or negatives of continuing - am I getting anything out of this for the hassle?

For me cutting gluten has led to a reduction in bloating and digestive issues, better mental clarity, more consistent energy and weight loss, some of this is undoubtedly derived from a reduction in carbs as I didn’t even think about what I ate before. However if I have gluten specifically through cross contamination or such like I can tell fairly quickly - peripheral neuropathy in my hand kicks in. Tingling and reduction in mobility of my hand, I can get a dip in mood and digestive issues.

My antibodies tga and tpo have been steadily dropping into the normal range too - which at least from a numbers perspective is great - however what this means to my wellbeing I’m less sure. However for me in myself I feel as good as I have done in 20 years - weight loss (6 stone in 1 year) I can exercise more, etc. How much of this is down to gluten eradication is difficult to measure but for me it is working and if it ain’t broke I ain’t fixing it.

Anyway best of luck with your decision, if you do have some just monitor how you feel and take it from there. Cheers Paul

Joanne82 profile image
Joanne82 in reply to pandv

Thanks Paul! That is unbelievable the difference you have from cutting it out. I do think my mind is clearer without eating it so I’m happy to stay off it but had no other changes. I’m working on dairy at the moment and then sugar eventually. I am curious and would be tempted to just eat a doughnut and see what happens but I’m scared I’ll set myself back 🙈 I’m glad you’ve found something that really works for you!

pandv profile image
pandv in reply to Joanne82

You read the apocalyptic stories of 6 months gut damage etc and this may be the case but at the end of the day if not having a doughnut is making you so miserable or agitated then I’d say that is probably as bad as the gut damage (not a very scientific view I know ;p). Reintroducing foods to me is a sensible thing to do even if it just validates the position that it really isn’t good for you or the opposite. Just do it consciously and with your eyes open, note any changes at all - mood / digestion / energy / bloating / sleep even. I did this with milk - as a former world champion pizza eater I had just come to terms with gluten free bases when I knew I didn’t feel right so cut dairy. I’ve added it back in a couple of times and boy can i see that for whatever reason dairy does not work for me at all - skin issues, and I get depressed if you had told me this before I’d have said what nonsense. So now I have reconciled I can no longer have my former favourite food but you know what I don’t want it when I know i feel like crap after. I’ve just learned to like other things.

Again you are the best barometer for what works for you - give it a go and don’t beat yourself up if you feel bad - just make sure you learn from what you did.

Cooper27 profile image
Cooper27 in reply to Joanne82

You won't know if it's a problem if you don't expose yourself to a bit of gluten to be fair, so just go for it! Don't go over the top though.

Tristy profile image
Tristy

Hi Joanne82, have a look at my post from 2 months ago. It was when I ate gluten again I found out what difference it makes. Hope that helps.

crimple profile image
crimple

I was wheat free due to intolerance for over 10 years and after TPO's went over range (Hashi's) I went GF. If I ate some inadvertently I had pains in my hand and brain fog increased. So I just stay away from Gluten. Things are a lot easier now, GF fish and chips and GF pizza, both obtainable locally. Still have to avoid milk and cream but OK with organic butter and hard cheeses. (Went lactofree a few months after GF) My grandchildren are affected by gluten and lactose so there is deffo something genetic at play too!

Cooper27 profile image
Cooper27

Around 75% with Hashimotos benefit from going gluten free. If you have been completely without for 2 months, then try eating some again now to see if you react - if nothing happens, you may be ok with gluten and can eat as normal. Just be aware that symptoms can take up to 3 days to manifest after you eat the gluten, and can be obscure (like stiff muscles, headache etc).

There are other foods that can trigger Hashimotos too - approx. 50% need to avoid dairy, soy, 10% be edit from cutting out eggs even. You can experiment by cutting them out as well in the future.

endomad profile image
endomad

GF made a massive difference for me. In 8 weeks I lost 4" off my waist and 6 off my belly (bloating prob) I was less tired, IBS symptoms went but I also think T3 helped IBS. My skin was less itchy. I know bread has a euphoric effect on me, I could eat a whole loaf of bread toasted when super stressed and I could actually feel the stress leaving, I would become sleepy and content lol talk about addicted.

Last Xmas a neighbor made me a cake and to be polite I had a slice with her, 20 mins I had swollen up, stabbing tummy pain, sweating profusely and on the toilet for 12 hours. I felt nauseous for several days. Have done it occasionally with a small crust of bread arrrrrrgh it's not worth it for me but a once a year reminder of how bad it makes me is prob a good thing.

It's an easy thing to do and if it works for you great, if after 3 months you feel no improvement no harm done.

Joanne82 profile image
Joanne82

Thanks guys I feel more reassured! I’m happy to stick to the GF way, I think I eat healthier without it. I may try a little bit in a month of so and see if there is any reaction. I was just hoping for weight loss as one of my symptoms to kick in but I’m starting to think it could be sugar for me 🙈

endomad profile image
endomad in reply to Joanne82

Weight loss didn't really start for me until I went T3 only and keto/low carb diet. I lost 3 stone last year and another stone so far this year (I gained 6 stone in 2 years after thyroid removed) so 2 more to go to my pre tt weight.

I still have low cortisol so have to keep exercise to yoga, gardening, walking and swimming so the weight loss is more about food than exercise for me. Xx

Joanne82 profile image
Joanne82 in reply to endomad

Well done on the weight loss! That’s amazing!

Annkapp profile image
Annkapp in reply to Joanne82

Yes, you need to cut out the sugar too. For many, breads and pasta , etc. (containing gluten) = simple carbs = sugar = fat accumulation in the body. So you have cut out some of the sugar but as you mentioned you are still eating (added?) sugar. My recommendation is to cut out all sugar which includes gluten free processed goods as these usually contain a higher amount of sugars. Reduced fat and low fat dairy products are also high in sugar. If you do have dairy it should be full fat to balance out (reduce the effects) of sugar.

I was able to lose weight by cutting out sugar, dairy and gluten (actually all grains) while still being a little hypo.

Joanne82 profile image
Joanne82 in reply to Annkapp

That’s my plan, since cutting out gluten I can hear my body better and cut out milk but seem to be ok with a little bit of cheese. It still feels like something isn’t right and everything seems to be pointing to sugar. I’ve changed one meal to carb free and reducing as I go. It’s tough when sugar is just like gluten and hidden in everything! It’s always good to hear success stories and helps to gear up for the whole hog!

Catseyes235 profile image
Catseyes235 in reply to Joanne82

Good to examine what sorts of gluten foods you were eating previously and how much? People have got into eating too much wheat based stuff adding pasta and pizzas to what was largely a potato staple diet, but my question is if gluten is bad then how do wheat based societies manage. Until potatoes came to this country wheat, barley and oats were staples with bread being a mainstay except it wasn't the refined wheat we have today. If your diet contained refined flour cake, pies, biscuits and white bread it will obviously affect you to stop and may not be the gluten itself? Taking antacids is a sure indication of eating refined foods and sugars! I have found a part sourdough corn bread which suits me really well and no bloating. We're all different . .

Annkapp profile image
Annkapp

Attaching a link to some helpful information.

glutenfreesociety.org/sympt...

Kenley profile image
Kenley

I have Hashimotos and tried going gluten free for 9 months but felt absolutely no better. In fact I have put on weight. I was not aware that I had any problems with digestion anyway but thought I should give it a proper go. My TPO antibodies did come down (but they had started to do that anyway) but my TG antibodies are as high as ever. I think we are all different and what suits one person may not suit another.

catrich profile image
catrich in reply to Kenley

Just out of interest Kenley, were you substituting gluten-free breads/pizza etc., or did you remove wheat and wheat -substitutes from your diet or did you even remove most/all grains ( to include gluten-free carbs)? It is very unusual to put on weight when you're on a v.low carb diet but I suspect it might well be easier with a high carb, gluten-free diet. Some of the products that claim to be gluten free are diabetes 2 waiting to happen!

Ari3 profile image
Ari3 in reply to Kenley

What are TG antibodies and how often should I test them and if I High tg how can I decrease them are they the same as TPO!?

Joanne82 profile image
Joanne82 in reply to Ari3

thyroid peroxidase antibody (TPO), is primarily ordered to help diagnose an autoimmune thyroid disease and to distinguish it from other forms of thyroid dysfunction. ... Thyroglobulin antibody (TGAb)— this antibody targets thyroglobulin, the storage form of thyroid hormones.

Kenley profile image
Kenley

I don't eat Pizza or anything like that but I did make my own gluten free bread, which I usually had only in the mornings. I'm not a great fan of pasta so I very rarely had the gluten free versions either. I didn't eat ready made gluten free products, with the exception of oat cakes, as I tend to cook from scratch anyway and very rarely have convenience foods. I did have things like quinoa but I probably didn't cut down enough on carbs in general. I think I probably eat too much fruit (especially at this time of year), which has a lot of sugar content - albeit natural. Wine is another of my weaknesses.

However, years ago when I was on Armour I felt much better and did manage to loose and keep weight off. I was importing it myself from the States and the formula changed and then it was hard to get hold of and I got a substitute from Thailand, Thiroyd or something like that, which wasn't as good. I eventually got treated via the NHS but of course it is with levothyroxine (125mcg) which is not a lot of help quite frankly. I am thinking now that I need to get back on some form of NDT and will probably try and see one of the private doctors listed in the pack I just got from Thyroid UK.

Eddie83 profile image
Eddie83

Gluten is not the only cause of Hashimoto's. Were you diagnosed Hashi's via TPO and/or TG antibody tests? If so, get a copy of the numerical scores from those test(s). Then go gluten-free for six months. If you take the test(s) again and your numbers go down, then you know gluten is the culprit. In my case, gluten was the culprit; it took about 18 months for my TPO antibody test to fall to zero, after going GF.

There are lots of other ways to test for gluten intolerance, such as Gliadin Antibody and TTG (tissue transglutaminase). If you want to go that route, google "gluten intolerance tests". Just keep in mind that non-celiac gluten intolerance can be every bit as destructive as celiac; the division celiac and non-celiac is false and not really very helpful.

Joanne82 profile image
Joanne82 in reply to Eddie83

Ironically the doctor has not mentioned Hashimotos. When I first went he told me to eat less and don’t worry about the gym just walk an hour, so I did my own research and got a test through medichexks which showed raised antibodies. Went back to the dr who then did their own test which again showed raised antibodies and they just said come back in a year, no mention of Hashimotos! So I’m just trying to figure this thing out myself which is a tough gig 🙈

Eddie83 profile image
Eddie83 in reply to Joanne82

Your doc is incompetent to render thyroid treatment. :-(

Joanne82 profile image
Joanne82 in reply to Eddie83

Don’t even get me started on the doctor 🙈 this is the second one I’ve seen 🙈

Eddie83 profile image
Eddie83 in reply to Joanne82

The way things work in the USA is: you have to have $$$ to hire an "alternative" practitioner who actually KNOWS how complicated treating Hashi's/hypo is. Don't have $$$? Then you are forced to Suffer The Idiots.

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