I've now been strictly Gluten free for almost 7 weeks, and taking Levothyroxine 50mcg for about 5 weeks. I'm due to go back for some repeat bloods in a few weeks to see how my thyroid levels and antibodies are doing.
I don't know if I've noticed any improvements or not from being Gluten free, it's hard to tell really especially as I've had some other stress and anxiety and food intolerance symptoms, but I'm interested to see whether this has had any effect on my antibody levels.
If you have felt better from being gluten free, do you mind telling me in what way you've felt better, and how long it took (I'm aiming to do a strictly gluten free diet for at least 3-6 months) I've not found it too hard really, eating lots of fresh fruit and veg, meat etc. not a lot of processed stuff, think it is something I could do long term, but wonder if I'm expecting miracles and to feel completely 'well' all the time which with the autoimmune side of things is probably expecting too much!
Written by
Chasing-rainbows
To view profiles and participate in discussions please or .
Even though my antibodies were already on the range it helped further reduced them. The biggest difference, I noticed is that my period improved. There was also a slight reduction in the sensation of having a lump in my throat. Whenever I tend to eat foods that I'm slightly intolerant to my throat gets this lump sensation.
That's good that your antibodies reduced further. In what way did it change your period? Mine was previously regular but heavy. Last time I was on levothyroxine years ago, my periods became really light and only lasting a day, too early to tell so far whether there will be any changes there again.
Mine has always been regular as well. A month or so after going gluten free, the flow started improving and the color became more brighter red instead of looking like old blood.
Also forgot to mention earlier, it helped my digestion.
Thank you, that's really encouraging. I think I've seen an improvement in my 'brain fog' which is brilliant. I'm not sleeping well at the moment but think that's more the stress/anxiety side of things. I think I'm less puffy around the face/eyes and feeling a lot less cold (weather much nicer now too though) Really curious about my levels. When my antibodies were over 1000 I felt absolutely awful! I'd love to get them right down if I can.
But, it wasn't the antibodies making you feel awful. They don't do anything much, just clean up the blood after an immune system attack on the thyroid. And, even if you got them right down, you would still have Autoimmune Thyroiditis (Hashi's) because the antibodies are not the disease. They are the result of the disease.
Also, antibodies fluctuate all the time, so if they're lower next time you test, it doesn't mean they won't go up again.
So, what you should be concentrating on is your thyroid hormone levels. It's low T3 that makes you feel bad. Raise it and you'll feel better.
My reply below was meant to respond to you also greygoose. I see what you mean that the antibodies are not the disease, but was hoping that if I can control the disease (if that's even possible with autoimmune diseases) that the antibodies would be lower and that might be a positive sign. But I do take on board that the antibodies fluctuate and that meds/diet might not necessarily stop the autoimmune attacks (I so wish there was a 100% definitive way to do that!)
When I was feeling awful (cold, fatigue, brain fog, panic attacks etc. it must have been during an autoimmune attack/flare, and the bloods I had around that time picked up the high TPO antibodies which were clearing up the aftermath of it)
There's a link between TPO antibodies and miscarriage and so that's why I've been put on the levothyroxine even though my hypothyroidism is subclinical. I've had so many losses now and am a little bit desperate to try anything. It's so scary thinking that this horrible autoimmune disease could be the cause for so much pain and loss.
Even if there's a tiny chance of improvement with gluten free, or medication, or whatever it takes, its all I've got at this stage I think.
It's frustrating as I'm otherwise fit and healthy, normal BMI. Active lifestyle. No smoking, drinking or drugs. Just the hashimotos.
Thanks everyone again for your thoughts/advice/explanations. Really appreciated
Well, I guess we all wish there was a definitive way of dealing with autoimmune diseases. But, as things stand at the moment, there isn't.
This idea of 'subclinical' hyposthyroidism is a huge get-out for doctors that don't want to treat. It should be treated, and not just for people trying to conceive. But, the fact is, the majority of doctors don't want the responsibility of diagnosing and treating all the cases of hypo they come across, so they nit-pick. But, technically, you are hypo when your TSH gets to 3.
Am I right in thinking you get flares like with other autoimmune illnesses?
Not quite like other autoimmune illnesses, no. A Hashi's flare is when the dying cells dump their store of thyroid hormone into the blood, causing you to go temporarily hyper: high FT4/3, suppressed TSH. Some people experience hyper symptoms, some don't.
But I don't think that's like flares in other autoimmune diseases. And, I don't think it ought to be called a flare because it confuses people - they think it means they get more hypo, instead of swinging to hyper. So, I prefer to call it a Hashi's 'hyper' swing, which is more descriptive of what actually happens.
tsh never majorly high at 4.65 (0.27-4.2) FT3 was 4.6 (3.1-6.8) and FT4 13.6 (12-22)
Those numbers do not suggest a 'hyper' swing. They are saying hypo.
It's the link between antibodies and miscarriage that concerns me most really.
I've never heard of a link between them. Do you have any more information on that?
As to limiting further attacks on the thyroid, looking at those numbers, considerable damage has already been done, so even if there never is another attack, you will still be hypo for life. The thyroid cannot regenerate.
Thank you, yes it's been going on for quite some time now in terms of the damage being done, I was first diagnosed in 2015 with tpo antibodies and took part in a trial called the TABLET trial looking at miscarriages and tpo antibodies. There was hope that levothyroxine would improve pregnancy outcomes in euthyroid women with TPO antibodies but the results of the TABLET trial didn't support this unfortunately.
That's really interesting that technically you're hypo once tsh is at 3. I wonder if the guidelines will ever change and treatment commence sooner.
The hashi hyper swing explanation is really useful, thanks.
My endo in France has mentioned the link of high TPOs and difficulties getting pregnant, and he also mentioned miscarriages. He encouraged me to get my daughter tested who is in her mid 20s.
Antibodies in themselves won`t affect the possibility of getting pregnant, but rather hypothyroidism caused by autoimmune thyroiditis confirmed by the presence of antibodies.
Hi Chasing rainbows . Thanks for posting that interesting study . I just had a look at it. This study doesn't actually show antibodies by themselves affect pregnancy outcomes , that's not what this study was trying to prove.. they were trying to show if treating 'Euthyroid' /TPOab positive patients , with 50mcg Levo improved outcome.... and it didn't .
"Euthyroidism was defined as TSH [0.44 - 3.63] and fT4 [10.0 to 21.0]"
They also looked at 'sub -groups' for TSH 'over 2.5' , and 'under 2.5' .. which still made no difference .
And they tested regularly and removed anyone who's TSH/fT4 went out of range ( and had them treated appropriately) ~ the number of patients who went out of range on 50mcg / or 'placebo' and were removed from the study was similar for both groups (10%)
So the study itself seems sound ......, but it's important to note , this study doesn't show antibodies by themselves are associated with worse outcomes .
They make this comment at the beginning :
"Thyroid peroxidase antibodies are associated with an increased risk of miscarriage and preterm birth, even when thyroid function is normal. ....... A systematic review of 31 studies involving euthyroid women showed a strong association between the presence of thyroid peroxidase antibodies and miscarriage .. and preterm birth .."
.... which does initially sound like it 'proves' the connection between positive TPOab / /Euthyroid / worse outcomes .
But on closer examination.. i'm not sure it does ... we would have to look at the studies included in the systemic review in more detail to be sure.
This study ( the one you took part in ) had 10% of each group who started out Euthyroid +TPOab ... but during the trial their TSH/fT4 went out of range.... so they were no longer 'euthyroid' and had to be treated differently (presumably by increasing levo for most of them) .
So this study clearly shows around 10% of 'euthyroid' +TPOab patients will go on to become 'not euthyroid' during a pregnancy.
??? is it possible that these 10% are the women who are showing up in some of the systematic review studies of "euthyroid +TPOab/Worse outcomes " ..and making it look like it's the antibodies affecting outcome... when it could really be the hypothyroidism affecting the outcome .. and the positive TP0ab just mean that becoming hypo during the pregnancy is more likely.
So it might be that "Euthyroid with positive TPOab" means thyroid hormones should be monitored regularly during pregnancy due to increased risk of becoming hypo ... but not that the TPOab themselves are what casued the worse outcomes ?
There are a couple of interesting Letters To The Editor at the bottom of the study, pointing out this 10% , and saying the A.T.A. guidelines say TPOab is a reason to monitor thyroid hormones carefully during pregnancy in 'euthyroid' women.
Unfortunately , I haven't managed to find a reference for the 'systematic review', so i don't know what studies they were looking at to support the idea that antibodies by themselves are the problem.
Again, the wording here talks about those previous studies though doesn't link to the studies themselves.
Previous studies have shown that women who have thyroid antibodies, even with a normal working thyroid, are at higher risk of having a miscarriage and premature birth. Small studies have suggested that giving a low dose of a medication called levothyroxine might reduce the risk of miscarriage and improve the chance of having a live baby.
I am just glad that my recurrent miscarriage clinic have put me on levothyroxine, and I will monitor my thyroid function regularly now especially if I am actually lucky enough to conceive again.
In the meantime I'm trying to do whatever I can to be as healthy as I can be, if gluten free helps at all it's something I'm willing to try.
Think it's helpful to feel like I'm doing something even just to feel there's some hope.
Yes , i can totally understand the need to feel like you are doing everything you can to 'help' .Gluten free certainly won't do you any harm , (as long as you eat 'real' food and not just heavily processed' GF' weirdness from the 'expensive' isle !) even if it does nothing to reduce your antibodies , you'll probably end up with a healthier diet which will help everything anyway... best wishes x
.... although if it's like most other problems in life , the time you get pregnant will be when you've totally given up trying and accepted it might not happen . Same as how you only find 'that thing you mislaid', when you've gone out and bought another . then you have two
a bit like me having twins ... when I asked endo if there was a link between hashimoto and multiple births , I lost him in my logic. He felt having twins was a sign of extra efficient reproductive system. Clear to me that he wasnt present at his kids birth ...
Am I right in thinking you get flares like with other autoimmune illnesses?
That's certainly how I was feeling at that time so must have been around the time of an auto immune attack, tsh never majorly high at 4.65 (0.27-4.2) FT3 was 4.6 (3.1-6.8) and FT4 13.6 (12-22)
I'm lucky that gynae have put me on levothyroxine for fertility reasons as I highly doubt my GP would have with it being subclinical unfortunately.
It's the link between antibodies and miscarriage that concerns me most really.
Certainly hope to feel better on the meds and just wanting to try to reduce future attacks as much as I can , I've read the Hashimoto protocol by Isabelle Wentz and she talks about the autoimmune side of things and recommends going gluten free, though I understand that it is a lifelong condition that I'll always have.
I took it to mean that if there are less attacks on the thyroid the antibodies will also be less as they wouldn't need to be present in such great numbers but I understand they do fluctuate.
Happy to try anything at this stage, so hope the combination of meds/diet helps stabilise things if at all possible.
I'm interested to see what my thyroid hormone levels are like at my next blood test.
My experience was obvious at first as I had such a bloated stomach . Doesn’t happen now! But later my full blood count was in range for the first time , probably in my life .
So it was longer term , maybe months, to reach the full effect ,
Ironically zilch improvement in anything, eg in feeling better, weight etc, I’m coeliac… my thyroid antibodies have never been checked to comment if they improved, so no comparison.I’ve been extremely strict gf diet for about 10 yrs now.
Annual blood tests confirm I adhere to stick to gf diet.
I was an asymptomatic coeliac weirdly and found through something else as never had gut issues, ironically I have more now!
It was found through a spinal problem as was my hypothyroidism & Pernicious anaemia all within weeks of each other.
If I didn’t need to go gf I wouldn’t.
Gluten can be inflammatory inducing, but many don’t need to cut it out completely, only coeliacs or those with allergies or intolerances.
You’re cutting out various things you’d otherwise have in your diet eg calcium, fibre, iron & B vitamins etc.
Gf items do not have to be enriched like normal flours (by law) so things like these can be hard to get daily recommended dose purely out of food… all above mentioned by my dietitian.
Stay away from the free from aisle… stick to naturally gf things.
I’d actually like to see a study now how many people on a new gf diet have raised blood sugars year in… regardless of weight change or less bloating…mine jumped up to almost pre diabetic range, as I embarked on trying to replace like for like with the gf alternatives, breads and pasta mainly.
I eat mainly high fibre pastas now to reduce the spike in blood sugar and hardly ever eat gf bread, I bloat terribly on it all apart from what make myself but as I’m low carb now, so I don’t bother.
Gf things are predominantly white rice and corn/maize, there’s better brown and higher fibre options out now and some are enriched… I bloat more on gf things than I ever did with gluten, it’s very odd.
Obviously if not coeliac the contamination issue doesn’t really apply unless you’re reactive to gluten.
So eating out isn’t so much as a dilemma as it can be for a coeliac.
I’m a tad strict on eating out.
Just thought put different prospective on it, as it’s not a miracle for everyone.
Only you can decide but be aware of some nutritional deficiencies that could occur if don’t add these into your diet.
My coeliac blood tests have always been normal, but there is a family history of coeliac and other autoimmune diseases. I've never had the gut biopsy.
I definitely have some food intolerances and am allergic to soy. It all feels so complicated sometimes, but I'll keep plodding on and experimenting, it's all trial and error at the moment I think. Just wish I could find a magic button to ease the stress/anxiety side of things as I'm sure that doesn't help with the auto immune symptoms.
Thank you all for your different perspectives and experiences, really appreciate it
I’ve been totally GF since about 2015. I developed Graves Disease in 2012 and I went GF after I was diagnosed with inflammatory arthritis. I’m not sure I felt all that different to begin with but but I tested my thyroid antibodies after three months and they had come down quite a bit. My CRP has come down and is low now too. I’m still in remission from Graves and according to my rheumatologist I’m in remission from inflammatory arthritis too.
In the beginning I tested every three months or so and my antibodies and CRP all steadily reduced. I took it that that meant that my system was ‘calming down’ which I saw as a good thing. After a while I realised too that my IBS had improved enormously.
I don’t find it difficult to cook GF food and I don’t find it more expensive either, I have a good, healthy and very varied diet - I eat more veggies than fruit though. To be honest it’s just good old-fashioned home cooking, I just don’t eat wheat and other gluten containing foods - I don’t eat a lot of (GF ) bread, cakes or biscuits because I don’t really love it - it tastes kind of sweet to me and those things really are expensive. I used to bake GF cakes etc but now there’s only my husband and I at home I don’t because it would be too much to eat. and I’ve got no intention of going back to eating gluten but whether it’s being GF or whether it’s because as GG said antibodies fluctuate all the time I don’t know but I’m happy with where I am right now and I’ll stick to being totally GF.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Going gluten free prior to diagnosis??
Worse after gluten free :(
FODMAP DIET -GLUTEN FREE
Going gluten free?
