Should I eliminate gluten?: Hi everyone I was... - Thyroid UK

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Should I eliminate gluten?

LindaV profile image
15 Replies

Hi everyone

I was diagnosed with underactive thyroid 20 years ago and have been taking Levothyroxine ever since (currently 125 mcg).

My sister also has underactive thyroid as well as Coeliac's disease and Type 1 Diabetes. My mum had underactive thyroid and rheumatoid arthritis.

I've been reading about Auto-Immune diseases and the links between them all and have come up with the fact that gluten may be my enemy.

Whilst I feel OK taking Levothyroxine I still have some symptoms like itchy skin and scalp, tiredness, brain fog and recently have started to develop signs of arthritis. In the past I also had unexplained infertility which resulted in having IVF treatment 13 years ago (successful thankfully).

I just wonder if anyone else has experienced similar and decided to take it upon themselves to eliminate gluten from their diet and what the outcome was.

Many thanks.

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LindaV profile image
LindaV
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15 Replies
SeasideSusie profile image
SeasideSusieRemembering

Do you have Hashimoto's? Eliminating gluten is considered essential if you do. I don't have Hashi's and find that gluten is not a factor where my hypo is concerned, although some people who are hypo but not Hashi's do feel a benefit if they eliminate gluten. Why not give it a try and see if it makes a difference.

LindaV profile image
LindaV in reply to SeasideSusie

Thank you Seaside Susie. I have not been diagnosed with Hashimoto's but have read that most people with underactive thyroid do in fact have it but that the treatments are the same. Is it a different test for Hashimoto's? To be honest it's simply been a case of going to the Dr's 20 years ago and having a blood test, being told that my thyroid is underactive and taking the medication they gave me. I haven't questioned anything further until now.

SeasideSusie profile image
SeasideSusieRemembering in reply to LindaV

You will need TPO (thyroid peroxidase) and TgAb (thyroglobulin) antibodies tests to determine if you have Hashi's. Not sure if your GP will be willing to do them as the treatment is the same so he might say it's not worth it.

I'm not an expert on Hashi's but from what I've read on here if you do have Hashi's then going gluten free will reduce the attacks on your Thyroid (which would eventually be destroyed).

You could get a private test done through Blue Horizon, they have a Thyroid plus Ten which includes TPO and TgAb.

Or your symptoms could simply be a case of not being on quite the right dose of thyroxine. What are your latest results (with ranges) and what dose are you on?

skyfall profile image
skyfall

I'm off gluten. Get dramatic headaches when I go back on it.

Fruitandnutcase profile image
Fruitandnutcase

I cut out gluten completely in September last year and I have watched my antibodies fall steadily since then. My Anti-thyroidperoxidase has come down from 31.3 to 8.2 and my Antithyroglobulin has come down from 401 to 145.6. It's still above the upper limit but it's a lot lower.

I joined CoeliacUK and got their amazing 'bible' which must list almost every food you can buy that is GF, there are loads of recipes out there and eating out really isn't too difficult either. My gut feels so much better too.

Anthea55 profile image
Anthea55

Giving up gluten means that you give up wheat, which can be a problem for many of us even if we are not coeliacs.

Long before my thyroid was checked, I had problems with my joints and decided to see if I had food intolerances. The tests showed the main intolerances were to wheat and oats. I gave these up and the joints improved. As a bonus, after a few months I realised that I no longer suffered from indigestion which had plagued me all my life.

Definitely worth giving up gluten to see if it helps.

I've heard that some people who can't eat British wheat find that they can eat French wheat - probably because British wheat has been cross bred so much that it's lost some of it's good properties.

Jazzw profile image
Jazzw in reply to Anthea55

I was reading something the other day that suggested that wheat grown in colder climates had more gluten in it - gluten effectively feeds the seed head, so more gluten offers more "feed" so it can survive long enough to germinate. So maybe it has something to do with French wheat being grown in a warmer climate - who knows? :)

The fact is though that there are many Coeliacs who exhibit no external symptoms and yet are damaged every time they eat it.

There seems to be an increasing number of people with non Coeliac gluten sensitivity as well. Personally I think it's the same thing as Coeliac, it's just - like Hashimoto's - not necessarily showing up on the test.

shaws profile image
shawsAdministrator

As you've been on levothyroxine 20 years I wonder if you've been on a sufficient dose? Do you have a print-out of your most recent blood tests with the ranges you could post?

If not, request a new blood test and ask for A Full Thyroid Function Test, which would include TSH, T4, T3, Free T4 and Free T3. If you've not had B12, Vit D, iron, ferritin and folate for some time, ask for these too.

Theoretically if on an optimum dose we should have no clinical symptoms.

Always make the earliest possible appointment for a blood test for thyroid hormones, fast also,(you can drink water). Leave about 24 hours between your last dose of levo and take afterwards.

Naomi8 profile image
Naomi8

I was put on thyroxine 18 years ago.I was diagnosed with Hashi's also after requesting an antibodies test.

I got more & more hypo symptoms as the years went by.In 2011 I went into a 2 year depression,I believe as a result of adrenal problems caused by my body's growing inability to process thyroxine.My GP tried upping my dose,but I wasn't able to benefit from this.At the same time my scalp became unbearably dry & itchy & my hair started to get thinner & thinner amongst other symptoms.The 2 year depression was followed by chronic fatigue.

My GP took advice from the local endo & agreed to me trying T3.I have since given up thyroxine altogether,for the present at least.

Ectopic beats that plagued me & supraventricular tachycardia are now very occasional & short lived episodes.

I take LDN & have been Gf for a few months.

I am enormously improved,especially mood & physical energy-wise,but I am left with an inability to cope with stress.

faith63 profile image
faith63

Hashimotos is treated the same as low, unfortunately, by mainstream idiot doctors. No attention is given to the faulty immune system, which is why i am using alternative treatments. I have tested negative for gluten, feel no different on or off of it, but am off, until i get myself well. Dairy too, is hugely important to stop..milk products.

maggykriti profile image
maggykriti

Have you been checked for coeliac disease yourself? You have a higher than normal risk because your sister has it as well as your own auto-immune issues. It is worth being tested for coeliac disease before stopping gluten. I've just had several weeks gluten challenge before testing which is not pleasant. It could explain some of your residual symptoms, not all coeliacs have gut problems. Best wishes.

LindaV profile image
LindaV in reply to maggykriti

Hi, I have in the past (some time ago) have a blood test only to screen for coeliac which was negative but I realise that just a blood test isn't conclusive at all.

I have a telephone appointment with my GP this morning (couldn't get a 'real' appointment!!) so will try and get some answers and a plan!

To be honest I also have never questioned my test results before or checked exactly which tests they were doing i.e. TSH, T4, T3, Free T4 and Free T3. I've just gone along with whatever my Dr has recommended. Time to take control though I think.

Thanks everyone.

I've been thinking of eliminating gluten also. My health history is similar to yours. I have had under active thyroid for the past 21 years, and then another autoimmune disease came along 6 years ago (where the white blood cells attack my skin.)

Also have arthritis in knees and foot, and my sister got Type 1 Diabetes at the age of 46.

There is definitely a link between them all. I am additionally thinking about seeing an a doctor who specializes in autoimmune disorders and see what they can advise.

LindaV profile image
LindaV

UPDATE: I have just spoken to my GP as wanted to ask a couple of questions before I take the plunge and stop eating gluten.

I haven't had any antibody screening done so she is arranging a blood test for this a full Thyroid screen and a coeliac test.

I'm guessing that I should keep eating gluten until these tests have been done?

And, I will ask for a print out of the results this time!

thyr01d profile image
thyr01d in reply to LindaV

Yes, it's necessary for an accurate result for you to keep eating gluten, I think the Coeliac website tells you how much.

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