Gluten free: Hi Everyone Can I ask Gluten free... - Thyroid UK

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Gluten free

Hills profile image
8 Replies

Hi Everyone

Can I ask Gluten free. Those of you that follow gluten free are you religious about your diet or do you avoid the main culprits. Bread, cake, pastry etc.

Do you know of any shopping apps ?

How does eating gluten make you feel.

Today I felt ok. Then we were out & I ate 1/2 a donut & palpitations are back. Not horrendous but enough for me to notice. Does it cause issues that quickly ?

Has anyone used Dr Georgina Conway MBChB in Bristol?

I am really struggling with why I am having such a bad time all of a sudden. My Endocrinologist admitted yesterday he does not know why my levels are fluctuating. He said he has prescribed Levothyroxine based on my weight, size etc. I have never heard of that before.

I am getting really frightened by what is going on with no sign of answers of help.

Thank you for any help or advice.

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Hills profile image
Hills
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8 Replies

I went strictly gluten free 14 days ago. Within 4 days the difference was astonishing.

I felt better than I've felt in a decade. My fatigue, brain fog, and general malaise reduced by about 80%. Genuinely astounding.

I didn't cut out oats entirely, as I still use oat milk in my tea, but there is no gluten in my diet now.

Coeliac UK have an app that's very helpful! You can scan the barcode of products and it will tell you if it's safe to eat.

Good luck!

Cooper27 profile image
Cooper27

I went gluten free when my OH was diagnosed coeliac, so I was as strict as it's possible to be. I didn't notice any difference tbh, presumed I was ok.

I'd had dermatitis on my shins for years before this, it cleared up about 6 months after I removed gluten from my diet (so much later, I didn't realise the link), then a few years later I started having small amounts of gluten while traveling with work, and I got a flare of dermatitis every time, so I established i'm intolerant.

It's worth going strictly GF for at least a month, but be aware of the obscure ways gluten can affect you - I certainly never expected mine.

Mostew profile image
Mostew

Time between eating gluten and reaction varies from person to person

Anything up to 3/4 days in my experience.

It’s good to keep a notebook with what you eat daily and how you feel , what you have done , so you can look back and see patterns

I would be strict for a few months . Even thing like soya sauce have wheat . Read all labels

SlowDragon profile image
SlowDragonAdministrator

Presumably you have Hashimoto’s?

Are your vitamin levels optimal?

Usually gluten free needs to be strictly gluten free to be effective

Watch out for cross contamination. No shared jam, butter, cutting mats, separate GF toaster for GF toast - or use Coeliac UK toaster bag

Worth looking at joining coeliac U.K. for electronic database of GF foods

Alternatively read ALL labels carefully

I never had any obvious gut issues, so was utterly astonished at very rapid reduction in symptoms on strictly gluten free diet

Now (4 years on) I remain absolutely strictly gluten free. The tiniest speck will cause terrible joint pain for 24-48 hours

If accidentally eat small mouthful, would be very unwell for 5-7 days.

Hills profile image
Hills in reply to SlowDragon

At the moment I have no idea. I started having issues in June. Been up & down since. Spoke to Endocrinologist yesterday. He wants more Bloods in 6 weeks. I think that is to long to wait. So will try & get Doctor to do everything otherwise will get them done privately.

Will knock gluten on the head completely, I have very little as in usually hidden in foods. So will need to read labels.

Thank you for your help & everyone that has commented.

SlowDragon profile image
SlowDragonAdministrator

Did you do coeliac blood test before going strictly gluten free

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

healthcheckshop.co.uk/store...?

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

This link explains why it needs to be strictly gluten free

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

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.

Thenightowl profile image
Thenightowl

There can be gluten in instant coffee due to cross contamination, and oats are an issue to some but not others. Eliminating and then reintroducing may help work it out. Glyphosate can also cause issues.

If you do have a leaky gut, l-glutamine powder can help heal it, it's an amino acid and aids cell repair, especially in the gut.

Giffysmith profile image
Giffysmith

Hi there, I know last year I was creeping towards hypothyroidism (was subclinical) and a nutritionist friend advised me to go gluten free.. in 3 months my TSH levels dropped back down to 'normal'... I didn't really understand the links then, and due to results thought I was ok/wasn't followed up by GP.. over a year later (and back to eating gluten) got really ill and diagnosed in May with TSH over 100/had to push to get antibody tests and was confirmed as Hashimoto's.. I then went gluten free, and have also been working on gut health, alongside being vegan/refined sugar free (was vegan/mainly sugar free before) and (alongside levothyroxine) I do feel so much better (my GP was surprised how quickly my TSH levels came down too). I still don't feel 100% though so I am also wondering about seeing Georgina Conway!! Be good to hear your experience if you do see her. All the best x

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