Why am I trying gluten free?

[mountainice]

I read on here that greygoose said this on another post:

"Gluten free will not affect your TSH. Going gluten-free is a measure to lower your antibodies. "

The last consultant endo said try gluten free but didn't say why, especially as I have not had a positive hypo diagnosis. The gp also said to me that I was going to try gluten free (after she had read the endo letter).

I haven't started trying to go gluten free yet as I am not convinced I need to. As above, if it does not affect TSH, is it mainly to alleviate symptoms and if so, what sort of symptoms does it alleviate?

[Lalatoot]

Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.

You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

[LMor]

I’ve been gluten free for over two years and it has helped tremendously. It has not reduced my antibodies at all but my stomach issues have mainly gone. No more rushing to the loo, no more being scared to leave the house and I am convinced it has also helped my migraines. Try it for a few weeks and see how you feel. If there’s no improvement then introduce it back into your diet and see if it makes a difference.

[greygoose]

What would be the point of just reducing your TSH, anyway? TSH is just a very rough guide to your thyroid status - very, very rough, sometimes. Reducing it wouldn't make you feel any better, because the TSH doesn't make you feel anything. It's low T3 that causes symptoms. But, gluten-free won't raise that, either. However, a lot of people find that a lot of symptoms disappear when they go gluten-free.

It doesn't help everyone, it's true. And, I'm not convinced it reduces immune attacks on the thyroid, but it's something that is worth trying for six months or so.

[mountainice in reply to greygoose]

No, there wouldn't be any point re TSH. Well, my T3 is lowish - was 26.67% through range in March and 32.4% in August. Has been as low as 18% through range over the years. In that case, I really don't see the point in trying gluten free if it won't help the T3. I have been increasing my B12 jabs myself and that seems to be helping gut issues. I will still think about gluten free but not keen at all just because it sounds too difficult. Also, probably cos I am annoyed with the endo telling me to try things but saying there is nothing wrong! He ordered a metanephrines test, but that looks for rare tumours.

[greygoose in reply to mountainice]

No, it won't help the T3. But, as so many people on this thread are trying to tell you, that's irrelevant. The gluten itself can be giving you symptoms. If you cut out the gluten, you will be rid of those symptoms. But, you won't know until you try. I did it and it wasn't that difficult. Eating out can be complicated, but more and more restaurants in the UK cater for gluten-free. It didn't help me, but at least I tried.

[mountainice in reply to greygoose]

The only thing I think it coukd help is feeling sick and loo problems but they have been improving with extra B12, but not long enough to know yet, i have memory issues, swollen legs, deafness, pain in ear, swimmy head on and off, muscle pain and an arm thatI can't raise properly, choking on and off and other things wrong. Can't see those improving on gluten free but I will read up more and perhaps give it a go. I also have Dupuytrens contracture and tendonitis which can he attributed to thyroid probs, Many thanks fir everyone's help,

[Angel_of_the_North in reply to mountainice]

Memory issues and swimmy head and muscle pain can be symptoms of gluten sensitivity. Trying gluten-free can also help with absorption of vitamins and minerals which in turn can help other symptoms. You don't need to buy expensive gluten-free substitute foods, just don't eat anything made from/containing processed grains.

[mountainice in reply to Angel_of_the_North]

I didn't know that, I put it all down to being hypo. I recently has a follow-up with a general consultant who diagnosed vertigo and prescribed tablets (which I am not taking as I don't think it is that) and referring me to a balance clinic ! Don't think I will attend that either. All a waste of NHS money.

Re gluten free, I thought perhaps it wouldn't be too bad (apart from when I am out to people's houses) but then I read gluten can be in table sauces, which we eat quite a bit of - like tomato sauce, mayonnaise and salad cream. I read it is not good just cutting out some things so that is why it seemed too hard to me. I have Oatabix for breakfast usually, and that just doesn't have oats in it, barley too I think.

[Angel_of_the_North in reply to mountainice]

Magnesium deficiency (also B12 deficiency) can also cause some of those symptoms. There is often gluten is sauces, but grain products have the highest concentrations. I try to avoid those sauces by reading labels, but I'm sure a bit gets through. Even so, it's made a difference.

Might as well go to the balance clinic at least once, they may be able to teach you techniques that help - you never know.

[mountainice in reply to Angel_of_the_North]

I am not sure about the balance clinic, it is not like I am over-balancing at all. I just get days where my head feels swimmy and as if my eyes aren't following where I look. I don't have to sit down because of that but because of feeling terrible and wanting to just sit till I feel better. I think the consultant was just clutching at straws, though he was the best one I saw in terms of listening.

[mountainice in reply to Angel_of_the_North]

I have bought gluten-free bread so far, that is all, but actually I am still eating gluten here and there as I had two biscuits at a friend's house. All I have cut out so far is breakfast cereal and bread. I know people say you can't half do it, but I was just wondering people can be sensitive to gluten but don't need to cut it all out, just some. I thought kefir was helping but the stomach pain has come back but not really the diarrhoea, not like it was. Extra B12 jabs (self-injecting) seems to help that as I have a B12 jab every 10 days (including the nurse one at the gp).

[Marz]

Just read a helpful post by TedHutch explaining what happens with gluten in the gut - in another thread. Perhaps he will join in ...

[mountainice in reply to Marz]

Thank you,

[Hidden]

I know opinions differ and my reply may seem controversial to some, but I have tried going GF in the past and it never did anything for me. I did not feel better, nor did it do anything for my thyroid condition (Hashimoto's). After a while, I decided it was not for me. This is not to say it won't work wonders for others, only that it does not work for everyone.

[mountainice in reply to Hidden]

I am trying something called Kefir to repopulate my stomach, it was recommended to me and seems to be helping alongside my every 10-day self-injecting B12. Not to say I won't try the gluten free, but I am holding off for a bit as I am trying different things and monitoring.

[Hidden in reply to mountainice]

Yes, I've read about it, it's probiotics, right? So I take it the taste is not too bad, then...?

[Angel_of_the_North in reply to Hidden]

Like very sharp runny yoghurt - smell reminds me of dirty trainers ...

[Hidden in reply to Angel_of_the_North]

That's what I was afraid of...I've been thinking about using to make smoothies (which would mask the taste), but not sure I could stand the smell...

[Angel_of_the_North in reply to Hidden]

If you make it with whole cows milk or buy from supermarket it doesn't smell too bad

[Hidden in reply to Angel_of_the_North]

Ok, thanks for the tip!

[mountainice in reply to Angel_of_the_North]

I didn't smell mine, just ate it! ha ha

[mountainice in reply to Hidden]

It tastes fine, just to me like Onken plain yoghurt which I have every day too, often twice a day if we have Onken on our dessert in the evening. I have tried two kinds of Kefir; one is called Biotiful Dairy and I bought it in Tesco (am I allowed to say) 250ml £1.45 and I take 2 dessertspoons in the morning. I just take it on a spoon though friends put it on their porridge or whatever. I have tried another one given to me by a friend and that was sharper. She says it has even more cultures and it does have a different taste - sharper as I said. Possibly too, this second one doesn't agree with my stomach as I got stomach pain etc for two days and my queasiness came back, but not certain it was that or something else I ate. The second one is from The Collective Diary and is a 500ml bottle. I am going to stick to the first one, which is lucky anyway as I can buy that easily nearby. My queasiness has gone again since re-starting on the Biotiful make. I am monitoring of course.

[Chelt16]

Hi - after much reading, and a miserable year with rolling range of sinus infections, dermatitis, terrible insomnia, and pains in joints I decided next thing to tackle was my diet. It was something I could try rather than rely on my gp who had no views whatsoever on diet and impact on my immune system. In the last six weeks I've come off gluten, and dairy but not eggs. The benefits so far are for me: eczema has disappeared, bloating has gone, I've managed to lose 3lbs (previously my weight gain had stayed same for 16mths), my sleep is slowly improving AND my fatigue is manageable rather than overwhelming. So to answer your question it's worth a try for 6 weeks. Everyone's system is unique so there's a chance it may help. P.S. stacks of products that can help for gluten/dairy free. Morrison's, Coop, Sainsburys all have things that you can try in the free from range. I now feel so much better this outweighs the loss of eating CHEESE which I love! Right I'm off to have a gluten free crumpet and cup of tea with coconut milk only one that doesn't make tea taste weird).

[mountainice in reply to Chelt16]

Thank you. Sorry for late reply. I've started on gluten free now, been about 3 weeks. Not making any difference yet. I still get the queasiness and feeling unwell. The unwellness can suddenly come over me out of the blue, but I will keep monitoring. I keep computer records of my symptoms so that I can track them. Enjoy those crumpets - I bought the bread and special flour to make my Christmas pud - hope it turns out ok!

[Chelt16 in reply to mountainice]

Hello again - just a thought but wondering whether the feeling unwell might be drop in blood sugar. I can get giddy, weak, wobbly sensation sometimes and this improves with low sugar snack/good. I also started writing a daily diary of symptoms to help do some detective work. Sorry you have this going along hypothyroidism can be so frustrating/depressing. Body doing weird things is scary. When it gets bad doing something nice for yourself can help too or so I've found. X

[mountainice in reply to Chelt16]

Thank you. Not sure about the low blood sugar, it can happen any time, though I will continue with my diary. I have been keeping a health diary since 2002 (!) only because I started having more things wrong with me after we moved here to the East Midlands. Once the not-well feeling has subsided a bit, it still continues for the rest of the day with this queasiness I get. My last blood test showed this:

Free T4 13 25% through range

Free T3 4.3 (3.5-6.5) 26.67% through range

and my TSH up and down, reaching 5.4 and down again. I just have a feeling it is something to do with this, but can't get any doctors to agree. Thank you for your support.