Coeliac disease

[nicky333]

I suffer with various conditions including under active thyroid and fibromyalgia & I do have Lichen Planus! My question is, does anyone suffer with Coeliac disease? I had a blood test recently to find out if I had symptoms of Coeliac Disease & just wanted some first hand experiences so if you do, please could you help me find out more . Many Thanks much appreciated Nicky xx

[nicky333]

Hi reallyfedup123,

Thankyou for replying to me😊

I’m not sure on my thyroid results tbh, but will try to find out at my doctors on my next appointment ! I have had an under active thyroid for about 4 years now and I take 100mg of levo a day, if that helps 😊 xx

[SlowDragon Administrator in reply to nicky333]

You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can no longer charge for printing out, rules changed after May 25th 2018

Can you add most recent results and ranges for TSH, FT3 and FT4, plus have you also had TPO and TG thyroid antibodies tested

Also extremely helpful if had vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them

Any not been done ask GP to test. They are unlikely to be willing to test FT3 or antibodies

If they are unhelpful, then private testing is next step

[nicky333 in reply to SlowDragon]

Thankyou for replying to my question, you sound so knowledgeable! Wish I knew more tbh! I have never asked for my blood test results from my doctor but I will this week once I go for my results!

Thankyou again 😊 x

[SlowDragon Administrator]

Presumably you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

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, 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

Ideally ask GP for coeliac blood test first

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 gut connection is very poorly understood

Lichen planus often is indicative of gluten intolerance too

[PixieMoon]

All you describe are also known to accompany an undiagnosed b12/folate deficiency so make sure you get both those checked along with coeliac, I have the autoimmune type pernicious anaemia and almost died when it was not tested for.

Also make sure ALL bloods you get a copy of the results and read them and the lab ranges as these are super important, low but in the range doesn't mean ok, low can still mean symptoms that would be otherwise ignored by and deemed ok.

[nicky333 in reply to PixieMoon]

Thankyou for replying to me! As far as I know, I have never been tested for B12 folate deficiency but my recent blood test was for my thyroid levels and various other issues including coeliac disease so once I get these results, I will share with you all! Thanks again 😊 x

[shaws Administrator]

You state you have hypothyroidism and fibromyalgia. One of our deceased Advisers ran the Fibromyalgia Research Foundation and what he found was that doses of T3 relieved fibro symptoms usually at a higher dose than normal because their cells were 'resistant'.

If you can get a new blood test for the following:

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies

and put them on a new post for comments.

GP probably wont do all but we have several private labs who will do home pin-prick finger blood tests. I will give a link.

All blood tests have to always be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your last dose of thyroid hormones and the test and take afterwards. This helps keep the TSH at its highest as that seems to be all the doctors take notice of.

Always get a print-out of your results for your own records and post if you have a query.

Your GP should also test B12, Vit D, iron, ferritin and folate.

web.archive.org/web/2010103...

[nicky333 in reply to shaws]

Thankyou for replying to me with such knowledge too! I'm not up on any thyroid results but I will get my results from my last blood test I had a few days ago which was a fasting one, I will ask my doctor for my results then I will be able to share with you all on here! 👍🏻 Thank-you again x

[SlowDragon Administrator]

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP or phlebotomist will be unaware)

[Cooper27]

1:100 people have coeliac disease, but 1:20 people with Hashimotos also have coeliac disease, so you have a higher likelihood.

[nicky333 in reply to Cooper27]

Thankyou for replying to me! I'm feeling like since I was diagnosed with Fibromyalgia that I have had other issues like thyroid trouble then Lichen Planus and now possible coeliac problems! It does seem like one leads to another sadly! I will get my results this week & share with you all on here. Thank-you again x

[DollyCon]

Hi Nicky333

In my long journey for treatment for Hypothyroidism it was thought I had Coeliac disease but tested negative. Nonetheless, I decided to adopt a Gluten Free life to see if it was helpful - and it was. Lichen planus in a number of forms, remains an unwelcome guest which I have yet to eradicate. I should add that once my thyroid was treated correctly I was able to stop eating Gluten Free and I'm fine. I have multiple adverse reactions to prescribed drugs which was originally thought to be part of the thyroid picture. However, turns out I have an enzyme deficiency. Let's face it - we thyroid bods are a pretty ropey lot!

Cheers, DollyCon

[nicky333 in reply to DollyCon]

Thankyou for your message! Appreciate your time to answer me! I did think that maybe I should go on gluten free food to see how I feel, I get my results this week so I will be sharing them with everyone! Hope your health has improved for you now! Thanks again x

[SlowDragon Administrator in reply to nicky333]

I have friend with lichen planus who found gluten free very helpful

[chapers]

In the late seventies I suffered the then appalling biopsy to be diagnosed a Coeliac.

Despite sticking to the diet I now believe I have continued to suffer from a leaky gut that has resulted in Hashimotos,at forty, severe lichen planus, at fifty severe alopecia and vitiligo at sixty.

A couple of years ago thanks to Thyroid UK's help I took ownership of my health which had gone down hill . I did massive amounts of research and to cut a long story short I discovered I have a defective gene that affected conversion and now take T3. Despite what I consider a healthy diet I also started taking Vit D Selenium, Koreen Ginsing and B12. The difference has been so noticeable everyone has commented on the return of my hair, and energy and also the vitiligo has gone. But also for me what has worked has been cannabis oil under the tongue daily having suffered from eczema dermititus and open sores all over my legs and arms from the lichen planus for 20 years my skin is completely clear.

[Mary76mary76]

Caution on going gluten free.........it worked so well for me that my levothyroxine has absorbed much better and I went hyperthyroid, it was very frightening................so if you go gluten free watch for signs of you needing less levothyroxine. I ended up going from 200mcg to 100mcg per day after going gluten free.