Gluten Free after RAI: Would anyone share their... - Thyroid UK

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Gluten Free after RAI

Lilacsocks
Lilacsocks

Would anyone share their experience of going GF? What kind of improvements did you experience and how long did it take?

I have Graves treated with RAI in 2008, I have seen GF recommended a lot, I wonder what benefits I could expect if my thyroid has been ablated anyway.

Thanks!

46 Replies

Hi lilacsocks. I had RAI in 2014 and nine months later my nitemare began! It’s been suggested to go GF many times but I struggle to look after myself so haven’t been able to give it a good go. But, I’m trying it now. New Years resolution for a few months. I’ll let you know how I go.

I’ve read a lot of good things about paleo keto but life is already a bit rubbish. I feel like it would be more rubbish minus cake 😂

I have not got hashis or graves. I was hyper and had RAI. I always ate as little bread as I could as I felt it made me bloaty. I tested negative for coeliac but went gf 3 years ago. Bloating has gone and I feel much better.

I've just tested negative for Coeliac and I have just gone GF and my bloatedness has gone! They do say they that the coeliac tests aren't 100% accurate. UAT patients can develop more than 1 immune condition.

It is the difference between allergy and intolerance. Glad you feel better GF.

Hello, so I had radioiodine therapy for Graves and now have Hashi's. After the treatment I had a test done for allergies. As a result, I went Gluten free and also cut out dairy. Feel so much better and my antibodies have been cut by almost two thirds. The other benefit I have seen is no more psoraisis, it literally vanished after a few weeks. I would strongly recommend an autio immune diet and there are loads of cook books out there to help.

cazmania7
cazmania7 in reply to Todd

Hi, are you just hypothyroid or do you actually have Hashis? I didn’t know it was possible to have Graves the Hashis too

SlowDragon
SlowDragonAdministrator in reply to cazmania7

It is possible to have both Graves’ disease and Hashimoto’s at same time

Kev2867
Kev2867 in reply to Todd

You should get checked for Celiac Disease. I have Graves and used to have psoriasis too. I had a blood test where it was 10 times the normal of a protein released in the blood by damage to the intestines. This blood test indicates string possibility of Celiac. Like you I haven't had any skin problems in 2 years since I have had to stop Gluten. There is actually a specific form of Celiac that only causes skin problems. Look it up.

Todd
Todd in reply to Kev2867

i was tested at local hospital and results came back negative.

KevJenn
KevJenn in reply to Todd

Ill assume that you were tested before you went Gluten Free. Fair enough.

Todd
Todd in reply to KevJenn

It was indeed. The test was done shortly after I was diagnosed with Graves.

Well, after the Radio I became hypo but now have Hashis, at least that's what my endo told me. Still have autimmune issues and just trying to function. The question you asked was about GF and it really is a no brainer. Even though the Thyroid is killed off with Radio, the symptoma don't go away, they just change. So, I have found that the key to feeling better is to have the balance between T3 & T4 conversion working well. I no longer care that my TSH is 0.01 providing the balance is correct, also optimal vitamins are essential. There are many experts on this site (I am not one of them) but all I know is getting the balance right is essential to feeling better. The only way I managed to achieve this balance was via NDT and a strict autommunine because I didn't convert. Prior to getting the balance right, I spent many wasted months/years feeling that I had lead boots on, breathless and basicaly rubbish. Now I function, not amazingly well but far better than I used to be.

Lilacsocks
Lilacsocks in reply to Todd

What do you mean by the right balance? Is there an optimum or is it finding the right balance for you?

Todd
Todd in reply to Lilacsocks

For me it means that my T4/T3 is optimum. Many on this site can advise on that, At one point my T4 was really high (above range) and my T3 was really low. This made me feel really low and unwell. Once I managed to get my T4 down and my T3 up, I felt a whole lot better. For me, T3 is key to my health

Lilacsocks
Lilacsocks in reply to Todd

Do you feel like a GF diet was part of achieving that?

SlowDragon
SlowDragonAdministrator in reply to Lilacsocks

Getting vitamin D, folate, ferritin and B12 optimal certainly helps improve conversion of Ft4 to Ft3. This helps get both Ft3 and Ft4 roughly similar % through range

Often gluten free diet can significantly help improve gut function.

The only way to know if that includes you is to try it

Getting coeliac blood test FIRST just to rule it out

I have been tested for coeliac because I suffered with IBS for years and it was negative. I have tired GF before to help with gut symptoms but didn't have any improvement gutwise, actually a little worse because my fibre intake increased and that didn't suit me. If my gut doesn't seem to mind gluten are there other reasons to go GF?

pembe
pembe in reply to Todd

Sorry, what does 'NDT and a strict autommunine' mean. I'm hoping to come off the Carbimazole soon and really don't want to have RAI or removal of thyroid as suggested by doctor.

Todd
Todd in reply to pembe

NDT is natural desiccated thyroid which is I think, dried porcine. It contains both T3 & T4 (someone will correct me if I am wrong). After I had radio I was put on Levothyroxine which is an artificial drug that as far as I am aware is T4 only and is the 'go to' drug from the NHS. It may well be fine for many but I can honestly say I have never felt so ill as I did when I was prescribed it. My endo did not consider it necessary to test T3, or vitamins and after many months of barely surviving I decided to look at other options. I found a private doctor who specialises in thyroid issues and also looks closely at diet and vitamins. He also prescribes NDT if required which I now take. It has taken a lot of time, money and patience but I am doing far better now.

As far as an autoimmune diet is concerned, it aims to heal the body by eliminating the foods that cause damage, ideally my doctor would like me to follow a strict paleo diet but that is a step too far for me because I like my porridge and rice etc. I had a test to check if I was coeliac (negative) and food allergy testing which came back with an extensive list of foods that I should never eat, thet est also said I had a 'leaky gut' The main offenders were gluten, cows milk products and many random things such as bananas, pineapple and salmon. I did a two month stint of eliminating every food that was on the allergy list and my diet was very restricted during that period. After a few weeks of this, I started to feel better and noticed changes such as prior to this, I had been plagued with psoriasis and for the first time in nearly twenty years it completely cleared up. Had I chosen to, I could then have gradually reintroduced foods that were restricted (apart from gluten and cows milk products) but I chose not to because I felt better without them. So now my diet is mainly healthy, I cook from scratch, have found a gluten free loaf that I can just about tolerate toasted and my only real objection is the rip off prices that GF foods cost. I have also managed to reduce my antibodies by two thirds. There are loads of autoimmune books out there and it might be worth looking on Amazon, I bought the autoimmune/paleo cookbook and action plan which I found really useful but I have adapted the advice to my needs.

Regarding your reluctance to have radio, I so understand that and I did resist. I did well on carbimazole, came off it and relapsed a year or two later. In no way would I try to influence you but I would urge that before you agree to it, you do lots of research. Looking back, I felt pressured to have it, was told that it was safer to be hypo than hyper and indeed that may well be the case but what they didn't tell me was that in addition to having hyper symptoms I would also have hypo ones as well. I am sure there must be many who have radio, do well on levo and thrive. Unfortunately if you don't manage to convert T4 to T3 you are stuffed. When I was struggling after radio, I found this site and it really empowered me to find an alternative solution, there are so many well informed folks on here and I wish you all the very best.

cazmania7
cazmania7 in reply to Todd

Hey can I ask more about the tolerance test you did around foods? And also which Dr you saw (private message tho!)

I too had RAI and been unwell since and trying various things!

Todd
Todd in reply to cazmania7

It was via Imu Pro (blood test sent to Germany) could someone tell me how to do a DM?

cazmania7
cazmania7 in reply to Todd

If you click on my username on the next screen you’ll see an icon for private message. Looks like speech bubbles 😀

cazmania7
cazmania7 in reply to Todd

I’ll message you and you can then hit reply

Todd
Todd in reply to cazmania7

done

Lilacsocks
Lilacsocks in reply to Todd

Could you let me know too 😊

Todd
Todd in reply to Lilacsocks

done

For some of us it is to do with gut function. If you have an intolerance to gluten like I have, eaten gluten will upset your gut. Poor gut function leads to poor absorption of your levothyroxine.

Hi Liacsocks, I initially went gluten free after consulting with a surgeon about my gallbladder going bad. His advise to try gluten and dairy free helped alleviate stomach pains that I would get daily. Changing my diet also allowed me to keep my gallbladder. I do sometimes have gallbladder flare ups, but it has actually been about 7 years now that I have been able to keep my gallbladder from needing removal. I think for me gluten and dairy ignite a systemic inflammatory response. The only regret I have is I wish I had known to test for celiac first before going off gluten. The test will not measure properly for celiac if you are not eating gluten.

Hi Liliacsocks, I had RAI treatment in 2008, and I’ve been trying to balance my thyroid levels since. Over the past 5- 6 years or more I’ve had terrible gut issues , blasting, diarrhoea 3-4 times a day ,most days .

I had a colonoscopy and OGD , which was negative, coeliac test was negative also. As a result I began to feel very ill, of course I wasn’t absorbing the nutrition from my food or medicine. None of the medics could offer me the advice I got from the amazing people here. They were very reluctant to test my vitamin levels and when I eventually got them done they were all in the very lowest range .

Only when I got help and advice from this forum about going gluten free , things have dramatically changed for the better . I was reluctant, at first, as i really enjoy my bread cakes etc , but I’ve been about 5 months now into gluten free diet ( getting used to it gradually) and I can honestly say I’m feeling so much better, my thyroid levels are stabilising and vitamin levels improving.

I have no doubt gluten free is working for me.

cazmania7
cazmania7 in reply to Golli

Very inspiring Golli and encouraging me to keep going with GF!

Depending on what symptoms you get when eating certain foods will tell you? ..i started with wheat, it helped me lots to lose weight around my tummy area. I used to suffer terrible with candida so I try my hardest to cut out yeast and my candida/thrush has almost gone,

I'm now switching to lactose free milk, feel much better ..

When I do eat gluon or dairy I feel the hurt instantly.

Hi Lilacsocks, I’ve been GF free for around 6 years now after it was recommended to me and I’ve never looked back. If you do it though, you have to do it wholeheartedly and not cheat My advice though, is to try and make what you can, instead of buying GF meals from the supermarket, as that makes the change very expensive. The only things I buy are GF pasta, bread, flour, gravy & breakfast cereal.

While making soups, I use a potato as a thickener, instead of flour. For pasta sauces I make my own with tinned tomato’s, garlic, pepper & seasonal fresh veg. I make all my own cakes & biscuits. For most recipes I tend to google BBC gluten-free & then type in what you want to make.

As for my health, overall I’ve been feeling much better. For years prior to going GF I struggled with IBS, regular water infections, even two lots of kidney stones. It hasn’t cleared up ever ailment, but where I am feeling so much better is my stomach and overall well-being.

Please let me know if you need any more advice.

Less brain fog/clearer headed has been my biggest improvement not having gluten

Hi I have Hashimotos and gave up gluten, dairy eggs, legumes and nightshade vegetables. I feel so well and manage to walk about 90 minutes a day. All of my thyroid readings have improved and my weight is returning to a more normal range. Google AIP diet. But only eat high quality fish and or meat if you include these things. I also have my vitamins tested regularly and eat lots of vegetables and fruit. A stress free life is also essential I think to support your immune system. Good luck. There are many knowledgeable people and admins on this site to help us.

I went on an elimination diet. Among others I eliminated gluten and then added it back in. The result was that muscle and joint pain returned as did fatigue and generally feeling unwell. When gluten was taken back out things started to improve. I have since tried a couple of times to add it back into my diet, because I love bread and gf bread really doesn't cut it, and each time the symptoms returned. It's also not just in my head. My son had accidentally shared a treat he thought was gf and it gave me symptoms. When we double checked it had, indeed, contained gluten. Having said that, my naturopath did an antibody test (which is not recognized as reliable in allopathic medicine) and he believes I have Coeliac. Should that be the case then there is not necessarily a connection to thyroid of course. I think it is best to experiment. From what I understand autoimmune thyroid is a capricious thing and a life long learning experience as the body needs to be fine tuned continuously. And approaches seem to vary not only by individuals but also within individuals. As to how long it takes; Symptoms for me appear within hours of consuming gluten and disappear after a couple of days of being gf. I hope you can figure out what works for you, Lilacsocks. All the best.

My life transformed a zillion-fold better when I went gluten free - I have auto-immune Hashimotos. Later I discovered I was allergic to cow dairy and egg, so I have cut those out too. You have to go 100% gluten free to feel the benefits. If you are in the UK I can highly recommend the following recipe books - River Cottage Gluten Free by Naomi Devlin and Free From by Pippa Kendrick. Both books contain hundreds of delicious recipes, including for bread and cakes. The latter book probably requires less 'exotic' ingredients than the former. I find shop bought gluten free bread and cakes horrible, but these books have some wonderful baked treats in them as well as lots of savoury recipes.

I tried gluten-free for a while with little success. I personally believe it does have a lot to do with food but I think it’s more to do with processed foods and additives than just gluten. Many people have had great success with it and I hope it’s the same for you. Best wishes.

I have Hashi's and going Gluten/Dairy/Egg/Soy free, in a short amount of time I was able to reduce my antibodies by 300, still elevated, but a definite difference. It takes a bit to find foods that fulfill you, but try the AIP Diet (Autoimmune Paleo). I take a low dose of NDT, no other medications, no other diseases, follow the diet, and I have a clear head, energy and feel back in the game. It's worth trying. Good luck!

I don’t know about what happens if your thyroid has been abated but I went totally gluten free a year or so after my Graves went into remission, that was probably in 2014.

I did it because I develop sero-negative inflammatory arthritis and as I already had several other autoimmune conditions I decided I had to do something. I had already done a lot of cooking for people who were gluten free so I didn’t find it a problem and I joined CoeliacUK and got their incredibly useful handbook and website although I don’t use it any longer.

I do regular home fingerpick blood tests to keep an eye on my thyroid and also vitamins and minerals etc. From that I watched m thyroid antibodies steadily reduce from when I started and my CRP also reduced and I have found my IBS to be much better since going GF.

I wasn’t checked before I started and I wouldn’t go back to eating gluten to find out so I don’t know if I am coeliac. but I know I feel better, my gut feels better and I wouldn’t go back to eating gluten again.

I eat regular food, mostly cooked from scratch and have a varied and healthy diet even though I skip on gluten.

I imagine that as you have Graves whether or not you have a thyroid then going gluten free could still have the same benefit but I don’t know for sure. Good luck if you decide to try it.

Can you please share how you do home finger prick blood test to keep an eye on your thyroid, vitamins and minerals?

SlowDragon
SlowDragonAdministrator in reply to jiankang

How to do DIY finger prick test

healthunlocked.com/thyroidu...

Sorry, I forgot that some people don’t know about them - I should have said that I buy a home finger prick Thyroid blood test from Medichecks a couple of times during the year and that I also use CityAssays vitamin D home fingerprint tests to check my vitamin D.

Thank you very much. Did not realise there are home testing kits.

I tried GF for a few months after TT and I never thought it made a difference.

Hi LilacsocksI’ve gone GF (I am hypo) and I felt better immediately. There are so many good GF products out there. Genius 5 seeds bread is amazing. And loads of other nice things. Big supermarkets now all stock GF bread, pasta, cakes, sauces etc etc

Good luck

A further question to those who are GF..Is "may contain traces of gluten" or "handled in an environment that also handles gluten" permissable?

Thanks!

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