could be celiac disease

[Janeylou69]

I'm so confused at the moment ,I'm having all these symptoms and don't know what to think anymore ,I'm very worried , I'm losing weight which has been an on and off thing since 2018 ,I also had a colonscopy which I had polyps, I'm hypothyroid , I'm anemic and low vit d ,I have pain in arms and legs ,muscle weakness ,stiff muscles ,cramps in abdomen and sometimes in feet and calfs ,I'm in a dark place at the moment ,I've got kids to think about but this is all I seem to think about ,my doctor is doing a celiac test and a stool test for inflammation and fbc ,i really needed to talk to someone who maybe has has the same symptoms

[Lalatoot]

Janeylou those are all symptoms that I can identify with. I was so bad that I was all but bedridden for 2 years. So what helped me?

Going gluten free stopped the bloating and agony. I am not coeliac. The coeliac test just shows the extreme allergy so you can still be intolerant of gluten without a positive test.

Getting vitamins at optimal levels. Being anaemic and low vit d will really have an impact. Low levels of both will create there own symptoms and will also mean that your body can't use the thyroid hormones properly. So supplements are a must as well as trying to eat iron rich food.

Gluten free and vit supplements are things you can do now. Once you've improved them then you can begin to see how your thyroid levels can be improved.

[Janeylou69 in reply to Lalatoot]

Hi lalatoot I'm definately feeling rubbish and I'm feeling old and frail and I've lost some weight but I'm only 43 and because of this I'm suffering from depression which I just feel like I'm in a real dark place everyday ,fatigue ,nausea aches and pains ,and I'm very worried thanks for your reply .

[klr31]

Have you had your B12 checked? Are you optimally medicated? Check to see if your D and iron, ferritin and folate have improved.

Karen

[Janeylou69 in reply to klr31]

Hi klr31 I have b12 injections every three months, been on them since 2018 ,I haven't been right since that all started and they tested my vit d and iron in march and I'm aneamic and have low vit d thanks for your reply .

[klr31 in reply to Janeylou69]

You may need retesting.

[Janeylou69 in reply to klr31]

I hope they will retest it thank-you.

[SlowDragon Administrator]

Don’t cut out gluten until been tested for coeliac disease

Keep eating gluten at every meal

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

GP should always test for coeliac disease when autoimmune thyroid disease is diagnosed

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

Low vitamin levels affect Thyroid hormone working

ESSENTIAL to get vitamin D, folate, ferritin and B12 levels at optimal levels

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

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

chriskresser.com/the-gluten...

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

thyroidpharmacist.com/artic...

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

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/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

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.

Your previous post shows you were under medicated on levothyroxine at 100mcg

Has GP increased dose levothyroxine to 125mcg daily

[Janeylou69 in reply to SlowDragon]

Hi slowdragon my doctors seem to think my tsh is in normal range so they won't put my medication up and my doctors only test tsh and antibodies they don't test ft 3 and ft 4 ,they say its because there's no significance in testing it ,so do you think I have hashimotos thanks for your reply .

[SlowDragon Administrator in reply to Janeylou69]

Last TSH test result was 4.06 ?

How long ago was this test?

Request 25mcg dose increase in levothyroxine as TSH is right at top of range

If GP refuses ……Request new test

Book early morning appointment, ideally before 9am and don’t take levothyroxine until after blood test

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

If you have symptoms with TSH over 1.5 then GP should increase dose levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

[Janeylou69 in reply to SlowDragon]

Hi slow dragon last tsh test was in March this year ,I didn't know about any of this ,doctors don't seem to tell me much about the thyroid ,they are doing celiac test and some other blood tests ,I will talk to my doctor about these issues thanks .

[SlowDragon Administrator in reply to Janeylou69]

Request 25mcg dose increase in levothyroxine

Which brand of levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

You need vitamin D, folate, ferritin and B12 tested at least once a year

NHS will rarely test that frequently

On levothyroxine We frequently need to supplement continuously to maintain GOOD vitamin levels

Vitamin D at least around 80nmol minimum

Serum B12 at least over 500

Folate and ferritin at least half way through range

[Janeylou69 in reply to SlowDragon]

It's always the same brand of levythyroxine that I have ,I'll look see what one it is .

[SlowDragon Administrator in reply to Janeylou69]

At least 90% of primary hypothyroidism is autoimmune thyroid disease

You should have had thyroid antibodies tested when originally diagnosed

Can you look at your medical records and see if you have had thyroid antibodies tested at any point

If no antibodies results, request these are tested with TSH

Alternatively test privately

Only do private testing early Monday or Tuesday morning, before 9am and last dose levothyroxine 24 hours before test

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

Often on special offer on Thursdays

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

[Janeylou69 in reply to SlowDragon]

They did test my antibodies so I will look at my medical records and find out what they were thankyou .

[humanbean]

If you've had a colonoscopy, and polyps were found, be aware that they can bleed intermittently or permanently. When they do bleed they massively increase the chances of you having low iron and low ferritin (iron stores). Not only that it will reduce your levels of all sorts of nutrients, not just iron.

I would suggest going 100% ruthlessly gluten free ASAP. It's a bit of a shock to the system and can take a while to get used to, but it will probably help you to absorb nutrients from your food better.

I'm anemic

Do you have copies of your blood tests showing that you are anaemic? Can you get copies and post your results?

What treatment have you been given for your anaemia, what dose, and how long have you been on it for? Are you tolerating the treatment?

There are lots of iron supplements available. Even the ones that your doctor prescribes on the NHS can be bought from pharmacies without a prescription, so you can give different ones a trial to see if they work better for you.

Info on iron supplements :

healthunlocked.com/thyroidu...

How to get an iron panel privately and get tested with just a finger-prick sample :

medichecks.com/iron-tests/i...

Get discount codes for private testing :

thyroiduk.org/help-and-supp...

[SlowDragon Administrator in reply to humanbean]

She’s just trying to get coeliac blood test done via GP BEFORE trialing absolutely strictly gluten free diet

[humanbean in reply to SlowDragon]

I missed that, sorry.

I've never been sure of the value of coeliac tests because the treatment is the same whether the coeliac test has been done or not.

I did get tested - in fact I got the full works. Endoscopy, biopsies, blood tests - all negative. But I got noticeable benefits from a gluten-free diet in less than a week.

[SlowDragon Administrator in reply to humanbean]

Yes I agree

I was tested twice 20 years apart. 1996 and 2016

In 2016 I then went strictly gluten free with immediate astonishing improvement within 3-5 days

because at this point I couldn’t walk, gastroenterologist did private endoscopy that week

Gastroenterologist found damage exactly as if coeliac. He was absolutely sure I would test positive for coeliac…..but subsequent DNA test on NHS said “probably not coeliac “

Difference for me is immaterial, going gluten free has been life changing and I can’t tolerate the tiniest speck of gluten

Because I have clear medical evidence of gluten intolerance medics are forced to take it far more seriously than me saying “I am gluten intolerant “

[Janeylou69 in reply to SlowDragon]

I hope I get somewhere with the results and that I can try and live a better life ,it would be nice to have some energy as well.

[Janeylou69 in reply to humanbean]

My test is booked in a week ,how long does it normally take to get results back from the celiac test ? .

[humanbean in reply to Janeylou69]

I'm sorry, I don't know - my tests were done nearly 10 years ago.

This link from Coeliac UK on getting diagnosed might be helpful :

coeliac.org.uk/information-...

[humanbean in reply to Janeylou69]

This is another link that may be helpful :

labtestsonline.org.uk/tests...

[Janeylou69 in reply to humanbean]

Hi humanbean I'm on ferrous fumarate for the iron ,where I have to take thyroid tablet in the morning then vit d four hours later and then I manage to take one iron tablet a day in the afternoon which isn't a lot . Thanks for your reply.

[humanbean in reply to Janeylou69]

1 tablet a day is a tiny dose. It might help, but it could take a very long time to improve your ferritin. Is your doctor going to do any testing after you've been on iron for a while? Because he should.

You may find you have to resort to private testing as I described in an earlier reply.

[Janeylou69 in reply to humanbean]

Hello yes it's a tiny dose but I don't think I can tolerate anymore iron tablets then that a day ,is there any other ways of supplementing iron ,I think they will do another test soon to see how things are going .

[helvella Administrator Thyroid UK in reply to Janeylou69]

There are products based on haem (heme) or ferritin.

Such products see the iron absorbed by different pathways so can be used alongside the more common iron supplements.

And don't ignore things like liver!

There is a small piece about iron in my vade mecum document:

helvella - Vade Mecum for Thyroid

The term vade mecum means:

1. A referential book such as a handbook or manual.

2. A useful object, constantly carried on one’s person.

Please don't get put off by the number of pages!

Nor by the fact it is targeted at people interested in thyroid issues. Much of its contents could be of use to many involved in health issues. Things like abbreviations, lists, general reference information.

In particular, it is not intended that you sit and read the document. Just that you download it and know you can look things up.

If there is anything you'd like me to add, let me know.

Not everything is in this one document - my major medicines document is still separate!

From Dropbox:

dropbox.com/s/vp5ct1cwc03bl...

From Google Drive:

drive.google.com/file/d/1ZW...

[humanbean in reply to Janeylou69]

,is there any other ways of supplementing iron

Yes. There are lots of other supplements you can experiment with. I described them in this reply to another member :

healthunlocked.com/thyroidu...

If you don't tolerate ferrous fumarate then you should try one with a lower iron content. I would suggest ferrous gluconate as a first alternative. The dose for adults is 1 - 6 tablets a day. You could tailor your dose to exactly what you can tolerate.

Some people do well with ferrous bisglycinate, although I think for some people the iron content might be just a bit too low.

Bear in mind that the maximum iron content that people can take is 210mg of iron per day. Take too little and your iron/ferritin won't rise. Take too much and you won't tolerate it at all, and it is toxic.

This link might be of interest :

healthunlocked.com/thyroidu...