Hi, I have Hashimoto’s and have been trying my best to be gf as that seems to be suggested that it’s a good idea. I know that some people can feel fatigued if they eat gluten. Plus I’ve read something about the antibodies attacking the thyroid because of the gluten, but I may be completely wrong. My family and friends often say “a little bit won’t hurt, surely?” So has anyone got something (not complicated) that I can tell them. When I was first diagnosed my TPO antibodies were >1300 (more than) ref range <35
I’ve just had bloods taken and I asked for the antibodies to be checked again to see if they have reduced although the endo said he didn’t think they would go down.
I’m new on here, so been reading a lot and have questions I will gradually post if I don’t see the answers in other posts.
Many thanks 😊
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Endocrinologists often seem to have little idea that antibodies often/usually drop when we go strictly gluten free. In part they have no idea because NHS refuses to test more than once. So it's not something they can see evidence of
As I get all my testing privately I always test FT3 antibodies and vitamins too
Putting results on a spreadsheet, this shows multiple tests over time, and very clearly demonstrates TPO antibodies finally falling, after 20 plus years just on Levo and not gluten free.
Since seeing this spreadsheet my own GP and endo now advise Hashimoto's patients to look at strictly gluten free diet
Look at first two links for explanation why and why it must be STRICTLY gluten free
It’s not going to be easy, but I think gf foods are gradually becoming more accepted and normal. So I take my hat off to all the people who have gone gf over the last decade or more.
A brilliant reply ! Lots of good recipes GFree out there - my advice don’t buy the rubbish stuffed with things like guar gum Xanthum gum / sugars etc
I personally avoid all grains now - feels is much better - for me it was life changing in just 7 weeks of avoiding soy , dairy , Gluten & grains - AIP Autoimmune paleo - cook from scratch I was surprised how much SOY I was eating not realising ( I’d been GFree for over ten years ) so the Soy & dairy & grains were the difference
We may not feel much of a difference going gluten-free but it can be shown in the blood tests for antibody levels reducing.
Most doctors or endocrinologists seem to not know anything about hypothyroidism except to get the TSH to somewhere in the range. They know nothing about getting the TSH to one or lower. Neither do they know anything about the FT4 and FT3 both of which should be in the upper part of the range as neither seem to be tested on a regular basis when the patient is still complaining. Ask the Endo or the Doctor "what thyroid hormone is the Active one i.e. T3 or T4? Let me know what they state.
Shaws, am with you on that. I’m seeing my endo in less than 2 weeks. He does know the difference, but doesn’t seem to know enough about gut health. This forum is far better. My GP definitely doesn’t know and he even dismissed my vitD level which 2 years ago was down at 21. I’m getting there slowly and realise it will be a life long battle of changes.
As our symptoms slowly resolve it is an amazing feeling. Despite the guidelines - others who have gone before and found a way to health is an invaluable help.
If you knew that gluten can cause invisible inflammation in your gut and then escape into the bloodstream and travel to and penetrate the blood brain barrier - again causing inflammation as a pre-cursor to serious brain disorders - would it make a difference to your decisions ?
I have never tested high for antibodies but suspect I do have Hashimoto's. Does eating gluten still damage your system when there is no evidence of antibodies?
I have just started taking Levothyroxine, but suspect I am not taking an optimal dose yet.
I have been tested and my antibodies were below the range but I have had many years of hypo symptoms and more recently an acute episode of hyper symptoms and blood test results, with help from people on this site I have come to the conclusion that I have Hashi's , my GP has agreed and I have recently started taking levothyroxine.
I was interested to know whether a GF diet would help even though antibodies were low.
I have Hashimoto’s. My antibodies were high (more than 1300 with the range saying less than 35). It’s in the family. My cousin and I battle many things and try and help each other with advice we learn from people wiser than our lovely GP’s.
I have been tested on a couple of occasions for antibodies and they have never been out of range.
With lots of help from people on this site I have come to the conclusion that I do have Hashi's as I understand that you don't always have high antibodies with the condition.
I have a son who is coeliac so I think I will give the GF route a go as he's home from uni at the moment.
I have only just started levothyroxine so it is early days at the moment, thanks for your help.
Sounds like a plan ! I was diagnosed with Crohns when I was 27 - now 72 - and have Hashimotos. Diagnosed here in Crete back in 2005. It was reading the book by Dr Datis Kharrazian that had me thinking more seriously about gluten - and how it can effect the brain. Of course when you are young these things do not enter your head - literally
As we get older, I believe we worry more and more about dementia and every day it seem more reasons for devel0ping it are discovered. For me, my main quality of life criteria is that my mind and my body leave this earth together. I don't want my mind taking an earlier flight.
People who do not appear to have any chronic illness are very blase about food. If one has been chronically ill then it should propel them into doing absolutely anything to recover and lead a healthy normal life. There are now lots of youtube videos of (mainly) functional medicine doctors telling us the reason we should cut out any foods that cause inflammation. If your gut does not like a certain type of food, whether it's grains, gluten, dairy, etc it causes Inflammation. That inflammation has now been proven to move all through the body and even into the brain. Did your ancestors eat gluten?
I've just read about the 12+1 Thai boys trapped in the cave who are now asking for KFC. I literally shuddered.
I have high antibodies (waiting for new results to update my records). This does make sense. But I also get a lot of migraines which start in my neck and shoulders. Although the migraines are triggered by bad sleep/fatigue, they are also triggered by lack of food. I’m also wondering if inflammation could be another contributor.
Haven’t eaten kfc and such like for years. Thought about it for a second last week, but then thought “no way! All that gluten! And bad fat etc”.
And MSG (monosodium glutamate). I once read somewhere that KFC chicken has a very high amount of msg in it's 'secret' recipe. Can't remember the source. Will try to google some info. I haven't eaten anybody's fast food chicken in a long time. When I developed atrial fibrillation I really changed my salt-eating habits. Early on, when I still occasionally ate their chicken I puffed up like a balloon. I'm sure it is loaded with too much salt but MSG can have the same effect. KFC and others are REALLY tasty but not worth heart failure. I just read a fox news blurb from 2014 and I'm paraphrasing: Most people don't know what KFC's 11 secret herbs and spices are but msg is definitely one of them. Not only is it in ALL their chicken, incl grilled but it is in their gravies, potatos, pot pies and even their green beans. A cardiologist told me msg can act like salt and is in so many foods. This was an eye-opener for me. In the US it can be found in the spice aisle labelled 'Accent'. For years when I was growing up it was a staple in many households-including mine-as it is considered an excellent flavor-enhancer. It took a long time before people learned how detrimental it was. There is an interesting misleading marketing ploy about MSG, It became known as the Chinese Restaurant Syndrome when it was discovered that some people get numbness and tingling of their feet and hands after eating chinese food. So now many US Chinese restaurants have a logo on their menus with MSG in a circle and the universal line drawn through to indicate it is not used. But this is meaningless and msg is in almost all commercial oriental sauces so unless the restaurant makes their own there is going to be MSG in the food. This is one of the 'foods' I avoid at all cost. I believe it's not even 'food' but a chemical. And for me it causes more fliud retention than regular salt.So much for 'truth in advertising'.
Sorry-KFC is Kentucky Fried Chicken. A long-standing yummy fast food restaurant which originated in the states-now pretty much world wide. VERY unhealthy! in my opinion. irina
I don't know about msg - don't want to get into a discussion on that - but KFC chicken is injected with soy, to plump it up. I have a very bad reaction to it, just like I do to anything containing soy. Only tried it twice - the second time to be sure - wouldn't touch it again!
I strongly recommend you do the AIP (auto immune protocol/paleo) Diet. Migraines, pain in neck, shoulders, many other pains can all be down to inflammation in the body caused by eating food that your gut/body dislikes. I never used to get any particularly strong symptoms from eating grains - just aches, bloating and a variety of other uncomfortable feelings. Now from doing the AIP Diet for 8 weeks I categorically know that all grains cause the inflammation. And now my system is 'cleared out' if I do eat any grains I get a massive pain in my bowel. Did you know that all grain is classified as 'grass'. Cows have three stomachs in order to digest it; we have one and therefore struggle to digest it. So, it's not only the gluten in bread that causes inflammation, there are other nasties in gluten free bread. At the end of the day, if you want to begin to recover from this horrible illness, you have to undertake to do all within your power to do so.
For the vast majority of hypothroid patients gluten free makes no difference. I haven't seen any research that gf reduces thyroid antibodies, antibodies naturally fall in time. it's a myth that is propergated by internet 'alternative' physicians who write articles expressed in vague terms or with unsupported hypotheses. You will find that these 'physicians' invariably have books to sell, consultations to sell or courses to sell as well as carrying payed advertisements. They have to churn out unusual 'cures' to continue to get hits and generate revenue. Quite a contrast to helpful thyroid scientists such as the late John Lowe.
Gluten free helps a small group of non-coeliac subjects who experience gut problems, otherwise placebo controlled studies show no benefit. If you have antibodies to gluten going gf might just help but for most people who do not have these antibodies it makes no difference. If gf is not giving you clear benefits ditch it.
Oh ! Please do share the placebo controlled studies that show no benefit - and who funded the research ? Inflammation in the body is an issue ... or have I got that wrong too ?
Marz, If you claim gluten free benefits non-coeliac (and patients without gluten antibodies) hypothyroid patients you should present the evidence, prospective placebo controlled studies. You should also have studied the research that shows no benefit.
It's been some time since I studied the research and most of my papers are buried in boxes in the spare bedroom. I can only present a few I have to hand. The authors state they have no conflict of interests and I very much doubt any of them are associated with farming foods with gluten or manufacturing gluten free products.
There clearly is an association between coeliac and other autoimmune conditions such as Hashimoto's ijem.in/article.asp?issn=22... .
The question is does going gluten free help with hypothyroidism or thyroid autoantibodies? Ventura claimed coeliac patients who went gluten free experience reduced insulin and TPO antibodies. I have read this paper in the British Library but only have a few scribbled sentences, I do not have a copy. My notes show that this was not placebo controlled. Antibodies decline in time as the thyroid dies, so a control group is essential. Also bear in mind that these were coeliac patients who might be expected to show a greater benefit than subjects with no evidence of gluten antibodies.
In a prospective placebo-controlled study Metso compared coeliac patients gluten free for one year with a control group on a normal gluten containing diet tandfonline.com/doi/abs/10.... . I have the full copy of the paper, it concludes ‘our prospective controlled study showed that gluten-free diet did not slow down the progression of autoimmune process in adult patients with celiac disease. Gluten-free diet did not have any beneficial effect on the thyroid ultrasound findings, thyroid function of thyroid autoantibodies.’
Another study in Sardinian children came to the same conclusion ncbi.nlm.nih.gov/pubmed/193... . I’m pretty sure I’ve read this paper but can’t find my copy, it isn’t right to cite research you haven’t read.
These studies were done on hypothyroid patients who are coeliac. What about people who are not coeliac but think they are gluten intolerant? There is some evidence that going gluten free helps resolve vague gastrointestinal symptoms in a small number of people. The easiest to follow is a study done on behalf of the BBC as part of the ‘Trust me I’m a doctor’ series bbc.co.uk/programmes/articl... . The show asked for volunteers for the trial and they tended to be people who believed they were gluten intolerant. As you can see in the charts there were some improvements in IBS type symptoms but not in other factors such as tiredness, brain fog or joint pain. Nor was there any difference in the immune markers they tested for.
We should also bear in mind that it might be possible that going gluten free for a long period might hinder the body’s ability to digest gluten, rather like being lactose free for a few years leads to lactose intolerance. This might explain why some gluten free subjects react to an unexpected exposure to gluten.
Over recent years we have had success in raising the profile of hypothyroidism and generating interest. Unfortunately, this has led to hypothyroidism joining weight loss and IBS as potential cash cows and it exposes patients to the attention of quacks on the make. It’s fine to read a blog and get ideas for potential help but it is vital that we then go back to the basic research and common sense, to make sure we are not being taken for a ride.
The BTA posts this warning ‘Please be careful - unfortunately there are a number of websites with unhelpful and inaccurate information which should be ignored.’. Whilst this certainly should apply to the BTA itself, by posting dubious information about effects of gluten free we are validating such comments. We should focus on the evidence and not advise every thyroid patient to ‘go scrupulously gluten free’, it’s not necessary and undermines out cause. Certainly if you are satisfied you have sorted your thyroid and have abdominal symptoms give gluten free a trial but it should not be put forward as an option for the majority of thyroid patients.
I appreciate your time in replying and of course posting the relevant links. It is possible you have not read my Bio where you will read that I was diagnosed with Ileo-Caecal TB at 27 whilst carrying my third baby that I subsequently lost - and was in hospital for almost six months enduring several surgical procedures - back in the 70's. Crohns also diagnosed in the ascending colon.
I remained under the care of Gastro-Enterologists for almost 40 years who no doubt were scientifically trained - BUT not once did they mention that I would need B12 injections having had my Terminal Ileum removed back in 1973. The damage due to LOW B12 has been a catastrophe but of course where is the science ? Ah yes there is mention of SADSC but of course with a range of 300 + I was not considered a candidate. Crohns medications had horrid effects back in the early days so chose to go it alone. Further surgeries ensued over the years and poor health had me retiring earlier than planned.
On moving to Crete I was diagnosed with Hashimotos in 2005 and so my journey began - my journey of finding answers and experiencing progress. Not once has there been a doctor that has guided me - apart from Dr Peatfield who taught me to watch out for things myself by keeping detailed records. No endless Scientific papers to read and absorb - just good practice.
So yes I went Gluten Free a few years back and having healed my gut I am now able to tolerate the occasional gluten treat and also dairy. Please do not tell me this is all in my head - I am 72 years old and am a down to earth gal who has travelled the road of poorly health with great strength and endurance after 13 major operations and many with complications. I held down demanding careers and ran a business or two in the UK. I now teach yoga twice a week - swim almost a kilometer daily - still running our letting business - and more. It is not due the Scientific Papers I have read - but the interesting Patient to Patient information that is freely shared - and when it resonates well - then that is time to give it a go as I have done. I find being intuitive wins hands down ! I have had too much experience to think otherwise !
A colonoscopy here in Crete a few years back - had the Gastro amazed - the healthiest he had seen in a woman of my age and with my Medical History. So was it due to all those scientific papers - absolutely NO - it was due to my adherence to the correct food and supplements. My only medicine is T4 and T3 along with the appropriate supplements.
So my point to you is - do not tell Newbies that being Gluten Free only benefits a few - point them to BOTH sides of the research and let them decide for them selves. Whatever works - works. Do not let us complicate our lives with research nonsense that is rarely well done - as often mentioned by diogenes. Let us learn little bits and pieces from each other and make ourselves WHOLE again ...
We must keep an open mind on ALL matters and not be closed to the progress of other suggestions beyond the scientific remit. As a yoga teacher I remain flexible ... give it a try
PS Acupuncture reduced my anti-bodies by a third in just a month with treatments three times a week. An experiment being conducted by my Physio who also practices Acupuncture. Ooops - forgot to post the link - is there one !!
I hadn't read your bio and agree that gluten free benefits some non-coeliac patients with gut problems as I mentioned earlier. I'm concerned that many posts tell newly diagnosed patients that they absolutely MUST go gluten free when there are over a million hypothyroid patients in the UK who have recovered without ever being gluten free. It's also claimed that it is necessary to go gluten free to reduce antibodies but the evidence shows otherwise. Giving false information diverts patients away from finding effective care and weakens the influence of thyroid patient groups.
I have 2 autoimmune problems, never done the gluten free stuff, in fact I eat loads of gluten, yet I'm doing really well on Levo and my other inflammatory issue has been in remission for 21 years. It also concerns me that everyone is told to "go gluten free" when it clearly isn't necessary for everyone.
I believe there are many as yet unidentified reasons why trying gluten free may be helpful. I think many of us have 'leaky gut' from factors we can't identify-years of processed bad foods, breathing toxic air, medications, too many uneccesary antibiotics, the list of possibilities is endless. So to me it makes sense to try anything that can prevent these toxic substances from getting into our blood stream via eliminating foods that may contribute to uncomfortable symptoms. Isn't it worth trying something as simple as changing foods to see if we get relief from suffering? Eliminating different foods to see if we feel better is surely easier, less harmful,and cheaper than many of the drugs and treatments we follow blindly which may have serious long term consequences. I say give gluten-free a chance. If it doesn't help, have a bagel and cream cheese for me.
This is a reasonable approach if good hormone levels have been achieved and the patient still has symptoms, especially gut symptoms. My concern is that we see responses to new patients who are advised they must go scrupiously gluten free, it simply isn't true, most patients get better without excluding gluten. Elimination diets also have a role if other options have failed, it's quite common to get 'pseduo allergy' in hypothyroidism, we may be able to reintroduce foods once our hypothyroidism is cured.
Hi Marz. Yours is the philosophy I've followed for quite a few years after spending time on both sides of healthcare. I want to share the following. May be off topic but I think it is applicable. I've collected sayings, interesting anecdotes etc for years. This is posted in my kitchen so I can remind myself often to trust myself: "You do not even have to leave your room. Remain sitting at your table and listen, simply wait.Do not even wait, be still and solitary. The world will freely offer itself to you to be unmasked; it has no choice. It will roll in ecstasy at your feet. - written by FRANZ KAFKA.
Science often lags behind personal experience.....we only have to look at the repeated claims by numerous endocrinologists that there's no clinical research based evidence for Liothyronine. Yet patients can clearly demonstrate that T3 is extremely effective and very often life changing
Gluten for many, many autoimmune patients is often similar
In my own case, I had two negative coeliac blood tests over twenty years apart. Endoscopy in 2016 revealed significant gluten intolerance. So I suffered over 24 years of terrible ill health because of unrecognised gluten intolerance. I had absolutely no gut symptoms.
The leading Gastroenterologist who did my endoscopy said there are vast numbers of people with undiagnosed gluten intolerance or are silent coeliac (coeliac with no obvious symptoms)
Unfortunately not one medic in over twenty years had suggested trying strictly gluten free diet. It was only coming here to this forum and seeing time and time again that Hashimoto's patients found strictly gluten free diet often helped.
First step is to test vitamins.
If you have low vitamin levels then your gut function is compromised. Low stomach acid and/or leaky gut are extremely common result (or cause?) of autoimmune diseases
Leaky gut allows gluten to cross into blood stream. Gluten can then cross the blood brain barrier too
So yes, it's always a good idea to try gluten free diet. It might give astonishing improvements. It certainly does for many, many patients on here. The only way to know is to try it
If it doesn't help, after trying it for 3-6 months, what have you lost? Nothing.
SlowDragon, this all makes sense. If there are signs or symptoms of possible gluten intolerance then a gluten free trial is sensible. I disagree with claims that every hypothyroid patient must go gluten free immediately, I'd wait until normal thyroid hormone levels have been achieved. In your case waiting 20 years was somewhat excessive. You had signs of malabsorption so gluten intolerance should have been considered as a possible cause. As far as I know endoscopy is the best way to confirm gluten intolerance.
'Absence of evidence is not evidence of absence' is elementary but there is evidence that gluten free does not have a magical effect on TPO antibodies. It's important to establish precisely what claims are evidence based. The trials on T3 supplementation assume that the T3 is only needed to restore normal T3 levels which is nonsense as most patients who respond to T3 treatment require supraphysiological doses of T3 that either put their fT3 in the upper half of the reference interval or even way beyond the upper limit. Clearly normalising T3 levels will not work for most patients who require T3 medication, so there's no point in running such trials.
I do not think every hypo member is told they MUST go GF. Nor do I think there are millions of Hypos doing well - they have merely adjusted to less than optimal health. I had been so ill/exhausted for years prior to diagnosis as must so many others - so any slight improvement is just that - an improvement.
Often members with Hashimotos come to the Forum in a pretty bad way and it is 'suggested' that giving up gluten could be a way forward. Not just to reduce anti-bodies but to help in healing the gut. Having endured Crohns and Gut TB I can tell you the difference between a poorly gut and a healthy one is huge - but far too much information for the moment ! So if it is gluten causing inflammation and all that goes with it - then it is a pretty simple remedy enabling the member to absorb nutrients from their food and begin to restore wellness.
I enjoy reading and if I learn just one small thing from each book - then that is fine - the same goes for the on-line Functional Docs you belittle - their Newsletters are interesting and often warrant further reading. Please do not think because we lack a scientific training that we are unable to sort the wheat from the chaff and heal our bodies
Sadly some members on the forums tell patients right from the start they must go gluten free. Most patients with primary hypothyroidism do well, as evidenced by their own opinion and studies that show they have no more symptoms than the general public. (many patients with other forms of hypothroidism are not diagnosed). If you have gut signs and symptoms that might be related to gluten then its should be investigated, whether or not you have a thyroid problem.
Many people turn up on here with acid reflux and/or IBS. Both classic sign of gut issues. Often with terrible vitamin levels, sometimes despite months or years of supplementing.
But often there are absolutely no gut symptoms at all
But plenty arrive with symptoms of low vitamins - tinnitus, vertigo, breathless, joint aches and bone pain, restless legs, hair loss, etc Many never even had it suggested by GP that their vitamins should be tested at all.
Checking vitamin levels and supplementing to bring to optimal is first step.
Getting thyroid hormones correct essential
Looking for the cause is next. Coeliac blood test recommended to rule it in or out. (Thought its notoriously unreliable) Then, assuming test is negative, a trial of gluten free diet is the logical next step
Reflux is often a consequence of hypothyroidism (reduced lower oesophagal sphincter pressure) and I'm sure many cases of IBS are a consequence of hypothyroidism (long story). The sequence of tests and treatment you suggest makes good sense, enables the causes to be identified.
When I learned about Celiac disease in school it was rare. Could it be that all the fast, and processed food with added chemicals that have become so prevalent in he last half of the 20th century has caused celiac disease to become a common, modern illness? And could it be that medical thinking has not caught up with this phenonemon? Just a thought.
Only if you resume gluten and test after another 6 months. Antibodies tend to decline in time as thyroid tissue is destroyed. You would need to repeat this cycle a few times to minimise the effects of random variations or carry out a trial in a group of patients.
Hi, welcome to the site! You've posted on a post that's 6 months old, so might not get a response. If you wish, you can start a new post, with some links to articles or your own story, explaining why levothyroxin is a problem, and you'll get more feedback that way
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