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Antibodies and ultimate destruction of the thyroid

Caroline888 profile image
16 Replies

greygoose

I have now been gluten free for nearly two years and my sole aim has been to reduce my antibodies (TPO >1300 and thyroglobulin antibodies 394). These have both gone down substantially on each of my last three blood tests.

I have seen you say so many times that this is pretty well meaningless, that even if the antibodies come down so far as to be in range it doesn't change a thing since we would still have Hashimoto's. What I'm wondering is, is there no advantage at all in reducing antibodies? Doesn't this mean that the thyroid is suffering fewer attacks and will therefore survive longer necessitating less thyroid medication?

Like everyone else no doubt, I find being gluten free very restrictive, especially as I am a vegetarian too. I would like to think that a gluten free diet was helping and that it was worthwhile.

Do you yourself follow a gluten free diet or do you feel it's totally unnecessary?

I really do value your opinion and would be so grateful for your comments.

Best wishes

Caroline

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SlowDragon profile image
SlowDragonAdministrator

I had high antibodies for well over 25 years on levothyroxine .....only after going strictly gluten free helped reduce TPO antibodies

The fact symptoms also improved as result of being strictly gluten free.....did that correlate to lower antibodies...who can say

Antibodies are the hoovers....cleaning up after an autoimmune attack

The only way to know if you need to remain strictly gluten free is to try reintroducing gluten...serif symptoms get worse ...and/or antibodies start to increase

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

88% benefit from strictly gluten free diet

thyroidpharmacist.com/artic...

Going gluten free is a strategy that everyone with Hashimoto’s should try. In some cases, we see a complete remission of the condition; in other cases (88% of the time), the person feels significantly better in terms of bloating, diarrhea, energy, weight, constipation, stomach pain, reflux, hair regrowth, and anxiety.

todaysdietitian.com/newarch...

Many clinicians report that eating a gluten-free diet may help improve thyroid function in nonceliac gluten intolerance. “Getting gluten out is primary for patients with Hashimoto’s, even without celiac disease,”

Caroline888 profile image
Caroline888 in reply to SlowDragon

Thank you SlowDragon, you’ve certainly given me plenty to go at!

Some of the links seem very technical but I will persevere😊. On the face of it though the consensus seems to be that gluten free is beneficial for those of us with autoimmune disease.

I have just done a Medichecks Ultravit. Perhaps the results, along with the links you have given, will strengthen my will to stay gluten free.

Thanks again for your helpful reply

Best wishes

Caroline

SlowDragon profile image
SlowDragonAdministrator in reply to Caroline888

Agree it can be difficult, generally and eating out ...especially abroad ....though even there it’s becoming more accepted

Wish airlines and airports would get more options though

Obviously if vegetarian that makes it even more restrictive.

But you could try going back on gluten .....see if you notice difference or if antibodies increase

Caroline888 profile image
Caroline888 in reply to SlowDragon

That’s so true. Eating out is a big problem, especially since many restaurant staff, even with the best of intentions, are not properly educated in preparing gluten free foods. Jacket potatoes might be cut open on a bread board or gluten free bread toasted in the toaster used for regular bread. I have been accidentally glutened by a waitress who promised a gluten free meal but then did not check what was delivered from the kitchen🙁.

Even so, after two years I have acquired a short list of restaurants/cafes I can rely on.

As you say I could try gluten again as an experiment, although the links you gave me earlier certainly extol the benefits of being gluten free and are quite persuasive.

I guess I am counting on my latest Medichecks blood test to point me in the right direction. If my antibodies have reduced yet again, I will most probably stick to gluten free. At least for the time being.

Thank you so much for taking the time to reply.

Best wishes

Caroline

greygoose profile image
greygoose

Doesn't this mean that the thyroid is suffering fewer attacks and will therefore survive longer necessitating less thyroid medication?

No, because it's not the TPO/Tg antibodies doing the attacking. As for needing less thyroid medication, doubtful, because once one starts taking thyroid hormone replacement, the thyroid usually shuts down, anyway, and stops producing any hormone itself.

Do you yourself follow a gluten free diet or do you feel it's totally unnecessary?

I did try it, because I'll try almost anything once in the pursuit of good health. My aim wasn't to reduce my antibodies, because here they won't retest them once you've had an over-range results, but because I've read of a lot of people feeling better, losing a lot of symptoms, when gluten-free. And, it's true that some people are gluten-sensitive even if they don't have Hashi's. But, it didn't do anything for me. I also was vegetarian at the time, and as you say, it's very limited to do both.

When I realised that gluten-free wasn't going to do anything for me - I didn't even lose any weight to speak of - I started eating it again. And, I didn't feel any worse. Eventually, I stopped being vegetarian, as well, because I realised that wasn't doing my health any favours, either. I started being really ill when I gave up meat. Now, I eat mainly veggies, but a little meat once or twice a week. And, I feel better.

I don't know how long you've had Hashi's, but it is normal for antibodies to reduce as the thyroid dies off. But, even so, they fluctuate. And, just because they've been lower for the last three tests doesn't mean they can't suddenly increase again. I know of no benefit to lowering them. Several suggestions are made, but no scientific fact to back them up. They should disappear completely once the thyroid is dead. Which means it's doubtful I now have any. But, I can say that that has had any beneficial effect. :)

Caroline888 profile image
Caroline888 in reply to greygoose

Hi greygoose,

Thank you so much for taking the time to reply to my post.

Yes, I have learnt from this site, mainly from you I think, that it's not the antibodies themselves that attack the thyroid. However, I did think that they indicated that the thyroid had recently been under attack since, as you have said, they come along afterwards to carry out a clean-up operation. For that reason, I felt that high antibodies were a sign that the immune system had recently been attacking the thyroid and lower antibodies meant that fewer attacks were taking place. Have I misunderstood?

I have been a vegetarian for nearly fifty years and have always felt well on a meatless diet until the diagnosis of hypothyroidism towards the end of 2017. I have responded well to taking levothyroxine and most of my symptoms (some of which I had previously put down to menopause and/or aging) have resolved.

It makes sense to me that the thyroid dies off as the disease progresses. I think mine has probably shrivelled away to nothing as one GP said last year that he couldn't feel it at all and indicated that meant I didn't have a thyroid problem and shouldn't be complaining of symptoms😟.

You have given me a lot to think about and a few starting points for more research.

Thank you so much for your very helpful reply.

Best wishes

Caroline

greygoose profile image
greygoose in reply to Caroline888

For that reason, I felt that high antibodies were a sign that the immune system had recently been attacking the thyroid and lower antibodies meant that fewer attacks were taking place. Have I misunderstood?

I'm not sure it's as clear-cut as that. And, as I said, antibodies are going to reduce as the gland gets smaller and smaller. But, given that there are 20% of Hashi's people who never ever have elevated antibodies, you can see that the level is pretty meaningless.

Also, reducing the artificially does not mean less attacks. The antibodies do not control the attacks, so if it is the case that your antibodies have been reduced by your gluten-free diet, that is not going to mean less attacks on the thyroid. I think you might be confusing cause and effect, here.

I think mine has probably shrivelled away to nothing as one GP said last year that he couldn't feel it at all and indicated that meant I didn't have a thyroid problem and shouldn't be complaining of symptoms😟.

Ha ha ha! Silly man! Talk about people confusing cause and effect, doctors do that all the time!

Caroline888 profile image
Caroline888 in reply to greygoose

Thanks greygoose for your kind reply.

I understand that the antibodies do not control the attacks but thought that their very presence was evidence that the thyroid had been attacked. I thought gluten caused the attacks due to its resemblance to thyroid cells, and that the immune system, when striving to eliminate the gluten, also mistakenly attacks the thyroid. The antibodies then come on to the scene to carry out the clean up operation. This has been my understanding from everything I've read.

Isn't it the case that a lower level of antibodies indicates that there have been fewer recent attacks on the thyroid?

I do follow your reasoning that a low level of thyroid antibodies could also indicate that the thyroid has finally been destroyed. In that case it would be difficult to determine whether cutting out gluten would be of any benefit.

It really is a minefield. I guess we can only do what we can and hope for the best.

Thank you so much for your patience.

Best wishes

Caroline

greygoose profile image
greygoose in reply to Caroline888

I understand that the antibodies do not control the attacks but thought that their very presence was evidence that the thyroid had been attacked.

Not necessarily. As I said, 20% of Hashi's people never have raised antibodies. On the other hand, everyone has some.

I thought gluten caused the attacks due to its resemblance to thyroid cells, and that the immune system, when striving to eliminate the gluten, also mistakenly attacks the thyroid.

That's one theory, but there are many other causes of Hashi's - like, for instance, over-dosing on iodine. If every case of Hashi's was caused by gluten, then everybody would benefit from going gluten-free. But, not everybody does.

The problem is that most people that write about Hashi's concentrate on the gluten aspect and ignore everything else.

Isn't it the case that a lower level of antibodies indicates that there have been fewer recent attacks on the thyroid?

Not necessarily. More likely to be that there is less thyroid to attack, so the attacks are briefer and make less 'mess'. But, it certainly doesn't mean that if you've reduced your antibodies artificially, because the immune system can quite happily continue its attacks without the presence of antibodies, or with less. This is where confusing cause and effect comes in.

Besides, with the odd blood test here and there, you can have no idea what is the highest and what is the lowest level of your antibodies. Nor how frequently they fluctuate. It's all assumptions, here.

I do follow your reasoning that a low level of thyroid antibodies could also indicate that the thyroid has finally been destroyed. In that case it would be difficult to determine whether cutting out gluten would be of any benefit.

The only way to know if it's of any benefit would be to start eating gluten again and see if you felt any worse. Even then it wouldn't be a definitive test, because any benefits you've felt could be because you are gluten-sensitive, and nothing to do with antibodies. Frankly, I can't see much benefit at all in obsessing about antibodies. They are such a small part of the picture.

Caroline888 profile image
Caroline888 in reply to greygoose

Thank you greygoose for your very comprehensive reply.

Of particular interest to me was your reference to the fact that the number of antibodies could drop due to there being less thyroid to attack. I hadn't even considered that but feel that could very well apply to me, particularly since the GP said he couldn't feel my thyroid at all. Perhaps my last three blood tests suggest my thyroid is on its last legs!

You are so right when you say that much emphasis is put on the value of a gluten free diet and maybe it isn't for all of us. I am certainly going to look into this more closely. I had a great aunt who had hypothyroidism for over 40 years and never avoided gluten - she lived to be 93.

Thanks again for your very detailed reply. I am very grateful.

Best wishes

Caroline

greygoose profile image
greygoose in reply to Caroline888

You're welcome. :)

MichelleHarris profile image
MichelleHarris

Once you have one auto immune it doesnt stop you getting another. In fact your more likely. I was collecting them before I discovered this site. I really dont find it hard being Gluten and Dairy free as I feel healthier and have lost weight and feel like I am doing something x

Caroline888 profile image
Caroline888 in reply to MichelleHarris

Hi Michelle,

Yes, I know what you mean. I have oral lichen planus as well as being hypothyroid and I am certainly hoping to avoid any more autoimmune diseases.

I can cope with being gluten free (and vegetarian too) but don’t want to do it any longer if there’s no real point. Am going to look into this again. For the time being I will still be following a gf diet but greygoose and SlowDragon have definitely given me much food for thought!

I have always struggled to maintain a healthy body weight so a gf diet, which further limits my food options, has not actually proved to be a good thing for me from a weight point of view.

I do know what you mean though about feeling you are doing something positive to improve your health. At the moment I am at a point where I feel I have an information overload. I am going to let it all settle for a few days and then review the whole situation and do a bit more googling!

Thank you for taking the time to reply.

Best wishes

Caroline

MichelleHarris profile image
MichelleHarris in reply to Caroline888

I struggled at first and really didnt think I could do it. I then started making sure I had several things in all the time that were on my diet. So I didnt fail when starving hungry. I’ve got into nutrtious soups and make myself a cauldron full lol, to last a few days. I didnt think my partner would support me either as hes a feeder. So I challenged him to make me low calorie, soy free, dairy free, gluten free, small amount of meat or fish per week. He actually really took it on board so thats been great too. Ive been to friends houses too and I thought they would think Im a right royal pain but no, they have been accommodating too. I buy Emmer bread from the local artisan market. Its the oldest grain and gluten free. They sell it to loads of Caeliacs. I went to the Trafford Centre and found a wonderful restaurant there which makes a point of catering for different needs x

Caroline888 profile image
Caroline888 in reply to MichelleHarris

I’m glad you have been able to cope so well and have received lots of support from your friends. I have managed quite well for nearly two years but do miss some things which do not accord with a gf diet. Still, like you I have found a couple of restaurants/cafes that cater for vegetarian and gluten-free diets. I do like soups but have never heard if Emmer bread - must look into it😊.

Hope you are doing well.

Best wishes

Caroline

MichelleHarris profile image
MichelleHarris in reply to Caroline888

Yes youve been very successful. Thats a long time x

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