Gluten advice: Hi everyone, I hope you had lovely... - Thyroid UK

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Gluten advice

Jojozo
Jojozo

Hi everyone, I hope you had lovely weekends. I've got Hashimoto's and leaky gut and was told several years ago by a private doctor I was borderline coeliac (I didn't even know there was such a thing!) and that I must quit gluten. Just being totally honest, I have dipped in and out since then but for some reason I've been suffering terribly recently and it would be no surprise if it has something to do with it, so I wanted to check the symptoms.

It tends to start off with abdomen/gut ache and then moves up to my throat, which becomes sore and swollen. I also get bad headaches, sinusitis, terrible brain fog, anxiety and low mood. I feel short tempered, unmotivated, extremely fatigued and achey. I've always assumed these are autoimmune flare ups, and I still think they are, but I'm now thinking they're being caused by me eating gluten (why do I do it? Why?).

The episodes are becoming much more frequent and can last for weeks. I've had several in the past few months so I have basically been permanently ill. It's beginning to affect every area of my life severely and as much as anything I need someone to give me a good kick up the arse and tell me to stop being such an idiot and thinking I can get away with eating non gluten-free bread and cakes sometimes.

I'm also a bit confused because I thought being coeliac led to weight loss but I've actually put on weight and despite being on a strict (but not gluten free) diet for two months, the pounds are not coming off.

Could this be the root cause of it all?! Is sugar something else I should ditch? I would love to hear people's positive stories. Thanks so much for any advice you can offer.

28 Replies
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SlowDragon
SlowDragonAdministrator

Literally thousands with Hashimoto's on here find strictly gluten free diet helps or is absolutely essential

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

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 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

Ideally ask GP for coeliac blood test first. Also request testing of vitamin D, folate, ferritin and B12

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

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

thyroidpharmacist.com/artic...

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's gluten intolerant connection is very poorly understood

Coeliac is only one type of gluten intolerance.

Jojozo
Jojozo
in reply to SlowDragon

Thanks so much SlowDragon, this is really helpful. I'm going to have a look at the links now. I mentioned to my doctor that I was diagnosed with leaky gut and she had no idea what it was. When I explained she said it 'sounded like a load of old nonsense'. Hence I'm trying to do my own research!

barb62
barb62
in reply to SlowDragon

Can I add one more link to SlowDragon's list

achs.edu/resource/theses-an...

Jojozo
Jojozo
in reply to barb62

Thank you!

Oh yes. And, don't beat yourself up.

I think most of us fall off the wagon. We suffer the symptoms and resolve to be strictly gluten free. However, it is difficult! Especially warmer weather. Meeting friends we don't want to appear awkward, fussy.. oh it won't hurt to just feel, and act like everyone else... but, yes we know it does hurt! Additionally, so many gluten free foods we purchase have other chemicals that harm..

According to John Bergman (who I adore!), to assist our thyroid, we should not only be gluten free, msg free, but dairy free too.

Like you, If I have the occasional slip up, I pay the price. The suffering forces me back to doing what's right for my thyroid.

Eventually, the new way of eating becomes a new lifestyle. We feel and look so much healthier. Perhaps, one day friends will begin to notice such positive change in us, want to know the secret, and they too give better eating a chance, and gluten food on sale, will become obsolete.

I do not use fluoride toothpaste, drink water contaminated with fluoride, for all the same health benefits. And, choose organic fruit veg and grassfed meat. John Bergman, and many other knowledgeable people suggest the same.

I take vitamins from advice on here, according to my individual levels. And, I try to exercise, at least through a daily walk.

Hope you feel better soon. And, that some of the above helps.

Jojozo
Jojozo
in reply to Supul

Thanks so much Supul. I am really paying the price at the moment so it's forcing me to go totally gluten free. I am building up to going dairy free too. Is the Lactose free milk a no no? I'm guessing that's still technically dairy?!

SlowDragon
SlowDragonAdministrator
in reply to Jojozo

Casein in cows milk is thought to be the likely issue with dairy. If so, you perhaps can have goat or sheep milk

thyroidpharmacist.com/artic...

I’ve never heard of borderline coeliac. But sounds like you should stick to Gluten Free.

Coeliacs lose weight when they are undiagnosed as they get malnutrition. They may look slimmer when on gluten free as the abdominal inflammation will go down.

If you are having trouble losing weight cut back the carbs and sugar.

Thank you Missimal.

SlowDragon
SlowDragonAdministrator
in reply to Hashi-Monster

Not all coeliac patients suffer weight loss, some gain weight or have no obvious symptoms

Gluten intolerance with Hashimoto's often causes weight gain

......yes we all fall off waggon from time to time, but really worth the effort, I piled on weight and couldn't loose, until I stopped gluten, cut out as much sugar as possible (don't need it, it causes inflammation ) try a healthy substitute, stevia or root plant maybe, buy gluten free snacks or make them so handy, so the balance shifts to being mostly non gluten and sugar, The other thing I keep reading is to address gut bacteria also heal the gut lining (bone broth, products for both, Nutri do good ones ) and check out if you have candida, also easily treatable,

....slow but sure I finally lost two stones so would recommend

Lots of good wishes x

Jojozo
Jojozo
in reply to Jeppy

Thanks for your reply Jeppy. I've heard really good thing about bone broth so I'm going to give a try. My gut could definitely do with some healing.

I would get retested for coeliac disease - having been borderline in the past, you're likely over the threshold now. You need to keep eating gluten in the meantime, and if your blood test is positive, you'll be sent for a biopsy to confirm. You need to keep eating gluten until you get the biopsy.

Weight loss only occurs with about 50% of those who have coeliac disease, but that still leaves 50% who will be normal or over weight. My OH was overweight when diagnosed, and 3 stone melted off him in about 3 months after he came off gluten.

Jojozo
Jojozo
in reply to Cooper27

Three stone? Goodness me! I got the test done by a private doctor. I'm sure my doctor has tested me before and said I wasn't coeliac, but the private tests I had done were much more comprehensive. Either way, my gut and general health are suffering terribly so there is definitely something going on.

Cooper27
Cooper27
in reply to Jojozo

Bear in mind, your private doctor said you were borderline (which means maybe your result was 6.8 on a range of 0-7). A good doctor will say 6.8 is borderline, while another doctor may say 6.8 is normal.

I think there are two tests as well, one is a genetic test, which says your predisposed to the condition, and will develop it in the future, and the other tests whether you have it now. It could be that is the difference.

It's probably still worth you trying a period GF to see if it helps, but I always think it's worth being tested first - you get GF food on prescription in some areas, you would be monitored for osteoporosis, and also get access to a dietician if you test positive.

Hi,

Was diagnosed with hypothyroidism in 2001 after giving birth to my son. Doctor told me that they could find no thyroxine in my blood and I thought I had suffered a stroke as my speech was slurred, was having severe palpitations, constant pins and needles in my hands which spread down my body as the day went on with bad fatigued. Gained over 6 stone in weight and despite dieting going to the gym etc could never lose any weight. I was taking T4 150mcg daily which was upped to 200mcg which made me feel worse. Finally went private and was given T3 only as my bloods showed I had a conversion problem with the T4. Still no weight loss but felt so much better. No more brain fog, joints were not so stiff etc but still had really bad fluid retention and I would swell up, especially my hands. found it difficult to hold a pen and write as they were so swollen. Was complaining about my weight in work when I was advised to try a low carb diet with meal supplements. After having no success with dieting for years decided I would have nothing to lose. The diet also cut out dairy and was gluten free. Unbelievably I have managed to lose nearly 3 stone in just over 9 weeks. I have stopped the meal replacements and I am now just doing the healthy eating and avoiding gluten and dairy produce and I am still slowly losing weight, feel amazing!!!

Any amount of dieting etc doesn't cut it if you have a permenable gut lining, I've come to conclusion it's the foundation of health to have a a healthy strong gut, Root of many evils really, if nutrient and vits whatever else can escape through the gut lining in pin prick holes, the immune system is totally confused trying to deal with them surely, , just reading yesterday how our wonderful bodies seeks out bogus cells cancer cells etc all the time and eliminate them, but if the body is overwhelmed what then, Also doesn't it makes antibodies to defend the body when it's trying to eliminate these rogue things that have escaped, I suppose this is then setting up autoimmune.? Please correct me if wrong

Cooper27
Cooper27
in reply to Jeppy

Yes, the current theory is that all auto-immune disease starts in the gut. It makes a lot of sense to me - I did gut tests after finding I have Hashimotos, and discovered I have gut candida, which hooks into the gut lining, creating holes.

In the case of the OP, the gut villi will be damaged, and this leads to nutrient deficiencies, as the gut can't extract the nutrients from food as effectively. Long term, this can lead to other conditions such as osteoporosis.

You may find after cutting out gluten, that medicine dosages can be reduced.

Thank you, this is really interesting stuff. I've had stomach and gut issues since I was young and I was diagnosed with an underactive thyroid when I was 22. I remember going to the doctor with crippling gut pains when I was in my early 20s but it was always been passed off as IBS until I went to get tests done with the private doctor.

What I've found is go doesn't do 'root causes' this is why we so need to educate selves and heal our bodies, my gp didn't care what caused my ongoing rash, very itchy, just said let's zap it with steroid - even Dr P told me he isn't sure why, on that one,

My mind went a bit OTT and I read up kidneys liver etc, I do know I need to cleanse liver, but I'm aware I can't until my gut is even stronger

Although alternative and some dont agree, I see a dam thorough keniesiologist every few weeks to point me in right direction, he tested me with a good liver cleanse but it's a no for the time being, strangely (he and I were both shocked) I was tested with levo and at the moment I do need it, and the natural metavive was a definite no, so I just assume your body does know what it needs for wellness - worth the 30£ as it saves me wasting money in products that aren't actually serving me, sadly cbd oil came up as a no (at the moment anyway ) haha I was gutted as I wanted it for hip pain but the pain has subsided (AT LAST). Had it years and can't believe it, so I assume as my body's heals and my metabolism improves it's healing too or at least I'm dealing with it so much better, hence back to yoga and more exercise, it's a case of heading the right way and getting balance. Haha my Libran scales have been all over the place these years, and of course, the anx and low mood improves too, I'd say read what you can, the solid metabolic doctors such as Dr P and Lowe, Skinner etc, who really know their stuff, and the ins and outs

Candida saliva test gives good indication. Sugar is bad for inflammation,

cholesterol actually goes into the artery to seal (like a plaster) any inflammations in the walls, so in fact, its a good fellow, as a stoic member here says, younso need your cholesterol

after years of cutting out fat thinking it's what you should do, now enjoying the benefits of butter and healthy fats like butter, live full yoghurt for bacteria etc.

Once you enjoy your food and get going, you hardly miss so much bread etc, I keep gf in freezer when I fancy egg on toast etc, taken out nightshade family still, tomatoes are ok when heated only, to do with changes in heat and ensymes I guess

Keep going, you will get there x

Jojozo
Jojozo
in reply to Jeppy

This GREAT! Thank you. It's really helpful. I'm thinking of going to another functional practitioner to get a general check up done. I just need to find one that didn't cost as much as my last one. It took years to pay off! But in the meantime, going totally gluten free is a great way to start and means I'm taking back some control over my health x

Polly91
Polly91
in reply to Jeppy

Very knowledgable Jeppy. Where are these great doctors? I’ve not tried kinesiology but it does sound good? Any advice on how to diagnose Candida & leaky gut?

Thanks

Cooper27
Cooper27
in reply to Polly91

I see a nutritionist, who suggested an organic acids test, as it can find a lot of your gut issues - that showed a few problems including the candida. A bit pricey (£180), but cheaper than a stool test (£360), which actually doesn't detect gut candida all that well. You really need to do it with someone who knows how to interpret the results though.

I'm curious to read that you can do a saliva test for it, I'll look into that, as I'd like to check my candida is dying off without the £180 expense!

Polly91
Polly91
in reply to Cooper27

Thank you Cooper. Let me know how you get on. Hope you’re improving

X

'GP

Sorry it got a bit long, I've stored it all up haha

Cooper how are you clearing your candida please? Any tips

Cooper27
Cooper27
in reply to Jeppy

This podcast has some information:

chriskresser.com/candida-hi...

I'm on a low oxalate diet (oxalates feed candida) and attacking it with lots of probiotics. The podcast will explain the types of probiotics, but there are a few options, and you need to work out what ones work for you.

...ok I've not heard this, il have a read

I smile as the candida test I know is slightly easy 🙈🙃😂. And free

Have a glass of water by bed and in the morning do a spit (sorry). Maybe quick mouth rinse first, unsure, and bobs your uncle if the saliva goes into strands and starts to sink you have yeast going on, you can google this saliva test quite easily for better detail

Dr Peatfield is fine with this one. He is so keen on the microndria and gut (sorry spellcheck ). So important

Also the Adrenals rank very high

His philosophy is you need to get adrenals in shape or thyroid won't improve and the meds won't work well until adrenals are strong

I've read that dr Lowe does t go this way

For me however, it seems true, as I couldn't tolerate levo, my head was screaming at even 50

And after Adrenavive I'm fine with it now and mainly my energy 👍

I was In A scary place before as didn't know what was wrong ......my thyroid numbers although into hypo were not much over and in line for U.K.

But I felt so ill I would crawl upstairs and life had no meaning

So,

We Can !

Are you in the States, another member remarked there wasn't keniesiology there? I'd train up if lived there!

I expect there is something to do the testing, another way of it? No?

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