Why be gluten free?
hello knowledgable people
I’ve been gluten free for awhile, thinking gluten interferes with the absorption of thyroid hormones into the cells. But a friend told me gluten attacks the thyroid
FYI I have secondary hypothyroidism (pituitary gland is malfunctioning and not producing enough TSH for the thyroid). My thyroid is not impacted ie no hashis.
I’m on 4 1/2 grains of NDT.
Any advice/science to help me please? I could do without being gf if I can. ☺️
Thank you
Pixie gluten does not attack the thyroid.Without getting too science like, part of the structure of gluten resembles thyroid tissue. For people with autoimmune thyroiditis aka hashimotos their immune system attacks the thyroid. Eating gluten for some hashimotos folks can trigger an autoimmune attack because of its similarity to the thyroid.
Folks can also be gluten intolerant without hashimotos. This is not coeliac which is a total allergy. I do not have autoimmune thyroiditis but I stopped getting bloated when I went gluten free. This is probably linked to gut function. Better gut function will mean better absorption.
oh that’s super interesting, thank you
Based on what you’ve said I think it’s time for me to try gluten again to see how I react.
Thank you ☺️
watching the replies with interest as I’d also like to eat gluten again- been GF for two years and don’t feel any better…
hi Lalatoot, I see you said it can trigger an attack in some hashi folk, some but not all? I’m clinging to the hope that I can enjoy gluten products again, they bring me so much joy! I eat minimal GF, it’s not the same and often full of rubbish! Thank you 😊
I am not hashis so have no experience of attacks or antibodies.Reading on here it is apparent that some hashis folks benefit from going gluten free and others report that it made no difference to them
Some hashis folks report that gf reduced their levels of antibodies. Antibodies are evidence of thyroid deterioration. When the thyroid has been damaged by an autoimmune attack antibodies turn up to clean up the mess that is left.
It is often suggested that folks try gluten free to see if that helps improve their hormone levels and or well being.
Even though I am not hashis going gluten free improved my gut function.
thanks so much Lalatoot, glad it improved your gut function. Mine isn’t any better but that’s interesting about the antibodies - maybe GF means my thyroid is being less attacked even if I don’t feel better - that’s what keeps me GF. Maybe time to get my antibodies checked again! Thank you and take care
I was gluten-free for years as it gave me digestive problems. I still developed hashi's. I find upper respiratory infections seem to cause an attack on my thyroid gland more than gluten ever did. Last year I went vegan and reintroduced gluten. Loved it for a while but 6 months in and my digestion is really bad again, so, sadly I think I am going to have to give it up again, although generally I otherwise feel really well. Having said that, if gluten is triggering attacks on your thyroid you wouldn't really notice, perhaps just a general feeling of feeling unwell. When I get upper respiratory infections, (including covid last year, which settled in my voice box) I can feel my thyroid swell a few weeks later and I can feel 'off colour' for months, and my hair tends to shed for 6 months after an attack.
hi gilbo72, thanks for your reply, so sorry upper respiratory infections cause an attack for you, especially as these seem to be even more prevalent post Covid. Sorry gluten seems to be upsetting to your digestion too. I’ve got SIBO which has really messed up my digestion. So it’s hard to know if it’s that or certain foods that make it worse.
Hope giving up gluten helps, have you tried low fodmap? I’m not sure what I’d eat if I went vegan, as meat and fish are some of the things that don’t cause me any trouble.
It’s so tricky to figure out what’s going on when just generally feeling unwell, some more frequent testing would be useful but then I think I’d get really overly paranoid and stressed about everything, which doesn’t help!
Hope you’re feeling much better after having Covid and are keeping well 😊
yes I have recently heard off SIBO, and did wonder if that’s a culprit! Generally I am feeling good. X
hi, for many people going gluten free helps - for others not at all. I’m in the latter camp and a lengthy gluten free trial did nothing for me at all. I’ve been tested for coeliac disease (while eating gluten) just to rule it out too and was negative.
I don't know if this helps or not, please bear with my whilst I explain. I had a hysterectomy aged 39. Almost instantly I suffered a whole raft of symptoms including violent night sweats multiple times a night every night. My oestrogen was measured and found to be zero so I then had one HRT after another, I was even prescribed testosterone but nothing made any difference with the night sweats or anything else. I was that way for the next 17 years whilst all the symptoms gradually got worse. My GP eventually identified autoimmune thyroid disease but said it was all 'normal' so didn't need treating. I found help elsewhere - that's another story but my health improved a lot. The night sweats continued but reduced from perhaps 6 or 7 times a night to perhaps 3 or 4. Here's the point (or coincidence ?) I had no obvious gluten intolerance but for various reasons decided to try going gluten free a year ago. I have to say I hate it, it's inconvenient, expensive and most substitutes are pretty ghastly. However, after a few weeks I realised that the night sweats had stopped. I still get too hot at night but don't wake up bathed in sweat, and it isn't the night sweat waking me up, the over heating only happens once I'm awake and if I move. For the first time in almost 30 years I have been able to sleep under a real duvet not just a sheet and have slept, without waking, all through the night on several occasions! It's not perfect but it is easily a big enough incentive to carry on being gluten free. At some stage, when my new meds have had time to bed in properly I might try gluten again to see what happens but the relief of no more night sweats makes me reluctant to even try introducing it again.
So you see, gluten might just have more effects on us than we know about.....
Good luck
Thank you. What a story. Unfortunately, misdiagnosis is so common, or GPs thinking our suffering is normal.
I am glad you are improving. Best wishes
That’s the irony, they got the diagnosis right but wouldn’t treat it, so yes I guess they think suffering is ok. Well, ok if they think it’s thyroid related but if it’s menopause they’re happy to treat those same symptoms! Funny old world isn’t it.
It’s bizarre! And antidepressants are the ’cure-all’ for all ‘women’s issues’. It’s like they are on commission for those, but thyroid? Oh no…
Sorry I rant…
Hi Puddleperson, this is extraordinary and I could have written it as the same things happened at exactly the same ages to me...the only differences are that I went GF over 4 years ago and unfortunately still get 2-3 night sweats a night but the similarities are uncanny.
ATVMWF
That's amazing, it's great to know I'm not alone! A sample of two doesn't prove a great deal but it certainly shows that it should be investigated further. I've long wondered why symptoms associated with menopause are treated sympathetically but identical symptoms caused by thyroid disease are unimportant and totally ignored. I wonder how many others have had a similar experience to ours? Also, I've so far not found anyone who can tell me how much oestrogen a post menopausal woman should have in their system, are any lingering symptoms aggravated by too little oestrogen? I'd guess probably so.
I hope your night sweats reduce, not sleeping is awful. Summer's coming and it's hard to look forward to if you can't cool off easily between hot attacks!
Hi Puddlesperson,
I fought tooth and nail for some HRT which I kept until I was turned 60 when a G.P. on my doctors panel point blank refused to renew my prescription. The night sweats increased so I sourced from abroad and now self medicate via 75Mg patches but still have 2-3 night sweats/night on most but not all nights. I cannot discern a pattern. I can have them for 46 nights in a row, then none for 5 nights, then get them back for 12 nights, then none for 2 nights and so on. I sleep with one sheet, no duvet, in N.E. England throughout the year and hubby has a separate duvet, the bedroom is kept cool. Whilst watching T.V. before bed I am freezing and huddled under a fleecy and the heating is turned up, it is utter madness! I have Raynauds so my hands and feet are usually ice cold but after an hour in bed you could cook an egg on my chest, I'm burning up and P.Js are soaking wet. I change sleep wear 3 times a night usually. I also have Sjogrens and someone once commented that the night sweats are a symptom of this disease. Have you been tested for it?
ATVMWF
I had horrific night sweats all 20 plus years I was taking HRT. My GP told me to stop shortly after I was 60 and absolutely forbade me to use the progesterone cream Dr P advised. The night sweats continued after I stopped both so maybe it's not connected. Yes, like you I'm freezing in the evenings, hands, feet and especially nose! However, you can time your watch by me as at 9.30 every night I'm suddenly boiling hot - lasts for circa 15 mins then stops. What's that about? I'm wondering whether to split my T3 dose as currently I take it all at 6am so maybe I'm getting low by then?
Sjogrens is interesting, no I've never been tested but will look into it. Thanks for that.
Hi Puddleperson,I also take T3 which I self source privately but I split the dose 3 times a day and aim to take my last dose at approx 9 p.m. that allows time to digest before taking other meds at bedtime. I usually go to bed quite late, 11.45 p.m. then wake up around 1 ish with my first sweat, next one about 3.30 .a.m and if I have a third about 6 a.m. by then I am so drained I just lie until I fall asleep around 7 a.m.
I have literally tried everything to get a good night's sleep...
Sjogrens is linked to other A.I. conditions, particularly Hashimotos and Raynauds. If you suffer from sore joints, fatigue, dry eyes and mouth as well it might be worth asking for referral. There are several tests but many show negative, even though you may have it. A lip biopsy is generally regarded as the definitive test.
ATVMWF
Thanks but I don’t think I have any Sjoegrens symptoms but will stay aware. I might just tinker with T3 timing though after I’m settled with my new NDT regime.
Have you had a ‘hot episode’ and then fainted? Happened to me randomly the other week. I got really hot, then hit the pavement, broke my finger and smashed my head open. I never fainted before…
That’s awful, poor you it must have been very frightening too. No, (touching wood now) I’ve never had that. The closest is sometimes getting over hot during Pilates sessions then feeling light headed and nauseous. I’m fine again as soon as I sit down.
Have a read of "Grain Brain" by Dr David Perlmutter. Its convinced me to go gluten free and I never thought I had a gluten intolerance. There is plenty of science and research references quoted in there. I'm reading the 2019 updated version. I'm hoping GF will help with my hashimotos. Good luck, you've done the hard work going GF.
Hi as the name suggests I’m coeliac…known as celiac out of U.K.
Gluten generally is a known inflammatory protein for many people, but not all.
Without going into all the different names proteins found in family of gluten grains. You might be aware oats and other grains can also have same outcome for some too. It’s a case of knowing what causes your problem. Lactose can also be a problem there’s many sensitivities out there.
Gluten definitely isn’t just about gut problems although I do suffer from malabsorption and have to supplement periodically or just continuously drip feed nutrients to get desired levels for well-being. It can cause neurological problems and skin problems, fertility and some rarer cancers. This is why before embarking upon a gluten free ( gf) diet it’s better whilst ingesting gluten to test for coeliac disease (CD) to detect antibodies there’s a few antibodies tests out there I have 2 done at my annual review which tells us how well I’m adhering to gf diet.
Generally anyone need more information on coeliac disease and gluten go to coeliac U.K.
It’s not all toilet problems here is my experience.
I’m an asymptomatic coeliac - silent coeliac some call it. Obviously at some point as I’m my case other areas which was invisible appear or cause a problem … some have had the condition decades before it’s found and believe me my story isn’t unique, maybe in how it was found in me but others have their story…the damage in some cases don’t get better even with gf diet this is refractory disease and at one point it was thought I had this, it took years for my antibodies to be negative...I saw gastroenterologist for few years I was having fortnightly appointments then they got spaced out according to how well I was doing very closely monitored and my gastroenterologist couldn’t believe I looked as well as I did given all the problems they found. CD caused multiple nutritional deficiencies and eventually lead to some neurological and skin problems (didn’t know was attributed to CD) and due to severe nutritional problems my thoracic disc bulged hitting my spinal cord I couldn’t walk after the bulge receded from hitting my spinal cord sensations came back (paraplegic shock I was told I had) after a week I realised I had not been to the bathroom the neurological issues caused my bowel to stop working and lots more tests were done, and within weeks of each other we found hypothyroidism (Hashimoto’s) levels approximate TSH 60 and 7 FT4, Coeliac antibodies so high they just put greater than 700, luckily the cancer ones were fine and all nutritional tests were extremely low Pernicious anemia (PA) antibodies wasn’t found but I do have PA and on 3monthly injections of B12 I had Dexa a month later and a gastroscope even without waiting for the biopsy report gastroenterologist said it was very clear I had coeliac disease … decade on I’m still having to supplement as we know obviously the damage is done and probably won’t get any better now. Although during this decade I have gain vast knowledge on my conditions also nutrition to. I have accidentally eaten gluten about 5 yrs ago it was biscuits (leave how that came about for another day) without any physical symptoms only raised antibodies so I don’t know if eating gluten and solely reliant on what people, the packaging and manufacturers, the restaurant etc present food to me hoping that all is well. I predominantly eat at home prepare most things to take with me… it’s very restrictive as I know free from aisle isn’t the healthiest option either and I try to eat where ever possible naturally gf foods not processed…, I only eat gf pasta on regular basis and opt for the higher fibre ones as most of the others not very nutritious although some taste ok I’m looking to help my nutrition not just use as a starchy carb.
I guess many reactive coeliacs may say I’m lucky but I certainly wouldn’t eat at an establishment if got ill and they know where their triggers are to avoid them, so its far easier to tell where the problems are.
So think my point is we aren’t all going to have the same reaction for example, I excluded gluten for at least 5 years and then had eaten gluten (mistakenly) had no visible reaction granted this wasn’t a prolonged exposure it was over few days before realising the biscuits were in fact gluten…8wks before my annual review the antibodies were highest they had been since my negative test… sometimes you can’t see the damage until more serious problems occur.
This is why I feel it’s best to get tested for CD, but if going on gf diet make sure you’re getting enough, Iron, B Vitamins and calcium and fibre these are few known areas coeliacs can get low on due to gf foods not having to be fortified and obviously absorption problems in these areas… most with autoimmune disorders need Vitamin D too.
hello, thank you so much for sharing your story. It makes me realise that there are others out there suffering. Pituitary gland disorders are not nice, and getting a diagnose is super hard and took me 4 years and £000.
I was tested and luckily i am not coeliac!
My understanding is that gluten can worsen the autoimmune attacks on the thyroid. So if you don't have any kind of autoimmune condition causing your hypothyroidism, I think you would be fine eating foods with gluten again.
This is a really interesting thread and I can see it has mixed emotions for many. I was “advised” to go GF when I was diagnosed with Antiphospholipid syndrome by my Consultant. He said it helped to dampen down the inflammatory process as gluten was very inflammatory. It was only later that I learnt that it was also important for my Hashimotos. I also have Sjogrens so with 3 autoimmune disease it felt right to comply. That was 10 years ago. Over the years I have had what I thought to be a few “glutenned” attacks, where I have reacted to things after eating gluten so was tested for celiac but was negative. It was concluded I had the non celiac gluten disease type due to my reaction.
I also found out due to doing exclusion diets that I had a huge problem with soy beans and in fact in most cases it wasn’t the gluten but the soy that was the issue. I also tested positive to SIBO and after that got treated found that my food intolerances, especially to some diary improved.
Recently I have been listening to the Zoe pod casts that come out on Fridays. They have had some interesting ones on Gluten. On one they discussed it’s inflammatory properties and on another the sensitivity issue with your gut. All their stuff is scientifically backed up and based on studies and they have well known Doctors who have researched things that come in and talk about the issues. On the Gluten talk the Dr said if you want to find out if you have a true gluten sentativity then try eating some proper authentic sour dough bread. If you are ok with that (and he gave the reasons why that bread was a good option) then you did not have a sensitivity. Obviously that does not include celiacs or those who chose not to eat gluten anyway.
So after 10 years I nervously tried it and had absolutely no reaction whatsoever! Does it mean I’m not now GF, not entirely! It means that in difficult situations I can choose what I eat and not be so worried about finding something that’s suitable. I will also be testing my antibodies to see what if anything has changed.
That is really interesting thank you.
I will definitely try gluten again and see what happens. I can always stop again.
As it happens I was part of the original Zoe study 😊. The test were gruelling but the results are super interesting, with detailed information about your glucose response and gut bionome.
Hi
Should we assume Professor Tim Spector and his team at Zoe or whoever was doing the talk are already testing or advising testing for coeliac disease before telling people to go eat some sourdough bread?… Which I think is bread made with a fermented starter and natural occurring yeast not the commercial stuff.
I get the sensitivity idea, for those who have been tested for coeliac disease, but like in my case (I posted my experience in this thread) I could actually eat that bread and have no physical reaction… so therefore are they’re saying I haven’t a sensitivity to gluten or is it the inflammation that’s caused my genetic switch on as predisposed to these conditions …Luckily I already know I can’t eat it without causing damage, regardless of what any medic says as I’m coeliac, if that makes any sense… just to put some context to what was said could you link this talk or have any idea when it was so I can listen too, so I understand what was said please 😊
I follow Zoe and have few of Prof Tim Spectors books. I couldn’t take part in the study due to having coeliac disease 🙄 I was interested in joining from a blood glucose perspective not gut related.
podcasts.apple.com/gb/podca...
Is this the talk?
instagram.com/reel/CmJ7GNGj...
I totally get this … he (Gastroenterologist) outlines testing first thankfully. He’s pointing out wheat issues v gluten and many get this problem but blame gluten.
Like my gastroenterologist he was baffled I didn’t have much symptoms that warranted me to follow up as very vague and no way any GP was going to pick those up as coeliac so just make sure testing always comes first before elimination.
Your Instagram link above doesn’t work. Here is a link to the talk I was referring to and for clarity I was not advocating that anyone who is a diagnosed Celiac should try the Sour Dough bread - hence my comment! Obviously if you don’t know you are celiac or just suspect it then you should be tested first.
podcasts.apple.com/gb/podca...
Both links still work for me…and my first link is the identical post to what you’ve just posted.
The Instagram post is the same Gastroenterologist explaining more briefly and clearly says testing which is what I wanted to know.
The gut health MD is his instagram name
I actually never said you are of were advocating anything, I only wanted to read/listen to the talk myself to get the context of what was said and I feel I explained that.
Believe me there are or have been gastroenterologist that say you can be a little bit coeliac with weak positive blood test results and just told don’t eat too much gluten… which a work colleague of mine was told when I worked with her 28 yrs ago, she was very poorly and had osteoporosis. Hopefully the generations of medics that followed him weren’t as flippant.
It’s a useful podcast and it differentiates between gluten and wheat intolerance and why people may have what they think is gluten problems.
FODMAP DIET -GLUTEN FREE
FREE Gluten Free Products
Hashis and going gluten free
The gluten free debate
Underactive thyroid and Gluten free
have you excluded it then reintroduced it to see what happens?
For testing absorption, I’m thinking you’d have to do a few weeks of the same exact conditions and repeat test twice (one without and one with) to see if it impacts your absorption (which would be complicated to replicate).
There are multiple reasons to avoid gluten and not all related to an intolerance… I think it’s a personal trial and error thing (unless tested for coeliac obvs).
I’ll be interested to hear what you find out. I’ve had real challenges going GF. It seems most of my kitchen is coated in it 😫 plus there is the family apathy and disbelief 🫢
🌱
😂 I hear you.
I’m also (mostly) vegan, so people look at me in disbelief when I tell them don’t eat pasta and bring my own bread. But it really isn’t that bad…
I’ve not tried to reintroduce gluten. Obviously had a few lapses on holiday, but I’m pretty strict.
I’ll give it a go to see how I feel, if it’s not clear cut…
Thank you
so people look at me in disbelief when I tell them don’t eat pasta
There are plenty of sources for gluten-free pasta. These days I buy Tesco's own brand, which is surprising considering how bad it used to be. I like Barilla as well. Personally, I think gf pasta has improved a lot since I first started using it nearly ten years ago. I used to think it was vile when I was first looking for a brand I could bear to eat.
Believe it or not, I don’t really like pasta. (I know, weird…)
It’s more that a lot meat eaters think that if you are (nearly) vegan you must eat either pasta or sandwiches.
And you are right, the gf versions of anything are really good. Genius bread is really nice.