Gluten free. What to expect: So looking through... - Thyroid UK

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Gluten free. What to expect

Jelley93 profile image
13 Replies

So looking through some of my old posts. people have said to try and go gluten free. So I have decided to do just that. Last week at hospital I had Vitamin B12 and folate levels tested although I don't yet have those results. Doing research into coeliac disease one of its symptoms is being dizzy/unbalanced. Plus I also pass wind quite often also it stops vitamins being able to absorb properly. This morning I have been Tescos and bought some items from the free from section all gluten free. I have also bought some actimel yogurt drinks that are probiotics. I am also trying to strip out any gluten from my diet. Studying every label etc wheat barley and rye are probably the main culprits. Im going to see if any improvements come about by cutting Gluten out.

If people have been gluten free for a while here are some questions if anyone could answer.

1. Was it easy to find many items in supermarkets with gluten free equivalents

2. Gluten free foods seem to be more expensive than their gluten counterparts, Ive heard you can get help via a prescription. Is this true?

3. How long into cutting gluten out, do you then notice improvements

4. With a strong link to hashimotos, can gluten free help you manage your thyroid condition better?

Thanks in advance for your replies.

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Jelley93
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13 Replies
MMaud profile image
MMaud

Firstly, Jelley, I don't have Hashi's so have nothing to add on that aspect.

I have been GF for a few years now. At first it felt like I spent my life reading labels and researching x, y or z, but like anything else it eventually settles in.

Personally, I don't seek out gluten free bread, pasta or whatever. I had been virtually grain free for years before the Endo told me GF was advisable.

I don't miss bread, or pasta at all.

In terms of how long before feeling any benefits? I'd say at least a couple of months, and to be clear going GF has to be gluten FREE. Any gluten isn't helpful. It isn't something we can get away with cutting back (as opposed to cutting out) on.

If you are awaiting tests for coeliac disease, it would be best not to go GF until after the tests are done, or you have to eat gluten for about 3 weeks before the test for a true result.

I'm not sure if that helps you at all.

Jelley93 profile image
Jelley93 in reply toMMaud

Cheers Maud, Yes your answer has helped. I was thinking that myself, cannot just reduce the amount of gluten but to rid yourself of it completely. Yes it seems a major lifestyle change is inevitable. I am prepared to that. I am hoping It will help reduce symptoms. Plus feel a bit healthier to I guess.

greygoose profile image
greygoose in reply toJelley93

I am hoping It will help reduce symptoms.

Goind gluten-free will only help with symptoms if the symptoms are caused by the gluten.

To try and answer your questions:

1. Was it easy to find many items in supermarkets with gluten free equivalents

Well, at the time I tired gluten-free, there weren't any gluten-free items in the shops here in France, where I live. I just cooked everything from scratch, and that way I knew there was no gluten in it. Gluten-free stuff is expensive, and tends to be high in sugar to make the food taste better.

2. Gluten free foods seem to be more expensive than their gluten counterparts, Ive heard you can get help via a prescription. Is this true?

Used to be, but I don't think it is anymore.

3. How long into cutting gluten out, do you then notice improvements

I never felt any improvements, so I can't help you there. I'm one of the people that gluten-free didn't help. I stayed gluten-free for well over three months, then started eating it again, and didn't feel any worse, so carried on eating it.

I should imagine it's like all things thyroid: everyone is different. I know some people feel instant relief from some symptomes on starting the diet, others need to be on it at least three months to slowly feel improvements. And, some only realise it was helping them after they start eating gluten again, and go back on the diet.

4. With a strong link to hashimotos, can gluten free help you manage your thyroid condition better?

Pretty sure it can't. But, it depends what you mean by 'manage'. It might improve absorption in the gut, so that you absorb more of your hormone. It might even reduce antibodies slightly, as people claim - although I don't know how you prove that, given the way antibodies fluctuate. But, even if it got rid of them completely, you'd still have Hashi's, I'm afraid. :)

Jelley93 profile image
Jelley93 in reply togreygoose

Hi greygoose. Yes I suppose its a trial and error situation really. Im going to see if it helps. If it doesn't really change my symptoms etc. I will know that gluten isn't a big issue for myself

greygoose profile image
greygoose in reply toJelley93

It's always trial and error. There are no guarantees.

Buddy195 profile image
Buddy195Administrator

Hi Jelley93, I felt much better after 3 months of being GF. It totally resolved stomach issues I’d had (gastritis) and I had more energy. Shopping was difficult at first, as was eating out, but most supermarkets have a GF section and many restaurants have GF options. I cook mostly from scratch, so the only GF products I regularly buy are cereal (I like Ella muesli), bread (my current favourite loaf is Promise which I get at sainsburys ), GF pasta and GF flour. Best wishes for your GF trial!

Jelley93 profile image
Jelley93 in reply toBuddy195

Thank you for your response. Im going to try my best and stick to the g/f diet. If I then see results. I will switch for good.

Buddy195 profile image
Buddy195Administrator

🤞you feel the benefit, it’s not for everyone but definitely worth a try!

Tintin0202 profile image
Tintin0202

Hi Jelley,

I have Hashi's and went gluten free about 4 years ago. My twin sister has coeliac's (I don't) and Hashi's. Twenty years ago she got bread on prescription - not any more! With her history it seemed the obvious thing for me to go gluten free as I had a lot of aches, pains, headaches etc. I felt so much better 5 days later and have stuck to it ever since. I did not find it difficult giving up all bread, cakes, pastries, biscuits, pasta and as a consequence lost about a stone in weight! I buy free from flour for cooking if I need it. I do buy GF pasta occasionally, but can live without it. Better to cook from scratch than buy the free from stuff which is more expensive and often has a lot of other ingredients that are not so good. The only difficulty is eating out at restaurants and with friends. Restaurants are pretty good now as so many people are gluten free but just occasionally I know that I have eaten gluten as I feel lousy the next day and it usually happens after eating out. You have to stick to being gluten free rigidly. It might help to read Isabella Wentz's book 'Hashimoto's Protocol'. You will learn much more about what gluten does to the gut not only for thyroid patients but for everyone. It is an interesting and helpful read for anyone struggling with Hashi's.

Jelley93 profile image
Jelley93 in reply toTintin0202

Thanks Tintin. Yes I'm hoping that it'll benefit me even if it's a small change

humanbean profile image
humanbean

Gluten can affect people in different ways.

People mostly associate it with gut problems, but there is more possible damage going on than just gut inflammation and gut damage.

...

Gluten may damage some people's brains, in particular the cerebellum. In this situation it can cause staggering, balance, and gait problems. This condition is called gluten ataxia which is one of the problems I have. Going gluten free did help my balance and staggering problems to some extent. I doubt your average GP would have heard of it or would suggest it to a patient with ataxia as a reason to give up gluten because it has only been identified fairly recently (I think).

According to wikipedia

en.wikipedia.org/wiki/Ataxia

Gluten ataxia is an autoimmune disease triggered by the ingestion of gluten.[31][32] Early diagnosis and treatment with a gluten-free diet can improve ataxia and prevent its progression. The effectiveness of the treatment depends on the elapsed time from the onset of the ataxia until diagnosis, because the death of neurons in the cerebellum as a result of gluten exposure is irreversible.[31][33] It accounts for 40% of ataxias of unknown origin and 15% of all ataxias.[33] Less than 10% of people with gluten ataxia present any gastrointestinal symptom and only about 40% have intestinal damage.[31][33] This entity is classified into primary auto-immune cerebellar ataxias (PACA).[34]

There are several conditions that can cause cerebellar ataxia and gluten ataxia is just one of them. A list of some of them is given on that wiki link above. It includes B12 deficiency and hypothyroidism as possible causes of ataxia, but there are others.

If ataxia is of any relevance to people reading this then following up on some of the references in the wiki page and searching for information on gluten ataxia might be useful.

...

Another possible benefit from eating gluten free is on mood. This was the quickest benefit I got. I noticed within five days of giving up gluten that my irritation and bad temper disappeared, and my depression was much reduced.

Title : Mood Disorders and Gluten: It’s Not All in Your Mind! A Systematic Review with Meta-Analysis

Link : ncbi.nlm.nih.gov/pmc/articl...

.

Title : Gluten and Your Mental Health

Link : gluten.org/2021/09/08/glute...

...

There is loads of information available on gluten and gut health.

Going gluten free doesn't just help those with coeliac disease, it helps people like me who have other issues. Unfortunately, doctors often think patients who give up gluten having tested negative for coeliac disease must be hypochondriacs who are influenced by fad diets. I have mentioned going gluten free to a doctor but all I got in response was a raise of the eyebrows.

humanbean profile image
humanbean in reply tohumanbean

I forgot to say...

I gave up on most gluten-free products very quickly. A lot of them (particularly bread) are quite horrible. The only things I buy are GF pasta (and they can vary in how edible they are, so you'll have to experiment) and GF flour.

Jelley93 profile image
Jelley93 in reply tohumanbean

I hope I don't have that condition. My balance issues seem to happen when. Undermedicated. However the hospital are saying I am overmedicated and so have reduced from 125 to 100mcg. Thanks for your insight

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