New here, can anyone offer any guidance please?

A bit of background: I suffer from pernicious anaemia and hypothyroidism (and suspected CFS).

Since I was young, I’ve suffered from stomach problems (stomach aches, constipation, trapped wind etc - basically a number of the symptoms of coeliac disease). I used to visit the doctors regularly but they could never get to the bottom of it so I put up with it for years. Back in ’09 I decided it was time to do something about it. I was screened for coeliac disease back then, but as I was going through stuff and barely eating I’m almost certain gluten was not a component in my diet. The "Tissue transglutaminase IgA level” was 0.2 U/ml.

I saw a gastroentrologist who tested for helecobactor pylori (apologies, I can’t remember the spelling) and also had an ultrasound. Nothing showed up. They also wanted a stool sample but, as I was young and confused, I didn’t understand how to do the sample or where to ‘deliver’ it, so I sat it out. Since then I’ve had it tested for parasites... all negative! They put it down to IBS and left it at that and I had the pleasure of having to put up with it.

In 2016, I was (finally) diagnosed with hypothyroidism, and from reading about stuff I went completely gluten free - and I haven’t really had stomach problems since! Upon drinking something containing barley my stomach problems started up again.

So, I would like to know, is it worth re-introducing gluten into my diet to get a diagnosis (and have to put up with the symptoms until then) or just continue gluten free and hope there’s no long-term damage IF I turn out to have coeliac disease.

I did mention the whole gluten-free thing to my doctor briefly at a follow-up for my thyroid but nothing more came of it as I’ve got plenty of other health things to deal with right now. I hate feeling like a hypochondriac...

TL;DR:

Is it worth the pain for a solid diagnosis of coeliac disease or should I continue to manage it without one?

14 Replies

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  • Many people can suffer with gluten sensitivity without being a full blown coeliac. So testing will not show anything positive if that is the case. If you are feeling well I would stick with what makes you feel good. Others of course may disagree. It is a personal choice.

    I have Hashimotos and a B12 issue and am gluten free to reduce my thyroid anti-bodies. Do you have any recent thyroid blood tests you can share ? The possible CFS could just be an under treated thyroid or the B12/PA. How often are you having your injections ? It is often suggested that Hashimotos sufferers give up gluten. Have you had the thyroid anti-bodies tested ?

  • Just read your previous post on Thyroid UK - lots of good advice. Apologies - should have read it before. Have you increased your T4 ? Also you need the FT3 testing and the anti-bodies ....

  • I am receiving injections every 3 months. My latest result was 335ng/L. I know it should be higher and I have mentioned this to the GP but because it is in ‘normal range’ he can’t really do much. Silly really.

    As for the thyroid, T4 is 12.5pmol/L and TSH is 1.3mu/L. Again, I have asked for FT3 but nothing came of it. He just did the standard thyroid function test.

    At this point I’m just accepting everything and taking it day by day, waiting to see the specialist in 4 months- and I’m hoping that he can offer better guidance and ongoing support. If not, back to the GP to fight for help. Sadly at the moment I have zero energy to keep trying for answers.

  • It's not surprising you have so little energy. Even without you posting the ranges for your thyroid - I can see the the T4 is VERY low in the range and needs to be near the top. This will mean that once converted into the ACTIVE hormone T3 - that too will be very low. T3 gives every single cell in your body the energy to function - and there are trillions and trillions of them. So when the FT3 is low then there is not enough to go around - hence your fatigue. How much Levo are you taking ? You need an increase methinks ....

    Likewise with the B12 - you need a result near the top of the range when Hypo - and once having injections the results are of little consequence and are skewed. The test shows what is in the blood and not the amount reaching the cells where it is needed.

    Folate - B9 - works with the B12 in the body - so it is good to take a GOOD B complex to keep all the B's in balance and to hold onto the B12 a little longer. You could of course supplement in between injections with under the tongue B12 lozenges like Jarrow Methyl 5000mcg.

    Private Testing for the full Thyroid Profile is available - and also includes Ferritin - Folate - VitD. Also includes the thyroid anti-bodies. Go to the main website of Thyroid UK and click onto Private Testing and then Blue Horizon - where you will find information for Home Testing Kits. Sorry not able to access the link at present.

    Maybe you need the B12 injection more often than every 3 months. Are you a member of the PAS Forum here on HU ? Lots of good advice with excellent information about the Guidelines your GP should follow for treatment. For many the 3-monthly treatment is NOT enough.

    I would not accept a CFS diagnosis until your Thyroid results are better - along with your B12 and VitD. I was once diagnosed with Fibromyalgia back in 2000 and then Hashimotos in 2005. You can click onto my name at the top of this post and read of my journey - it has not been easy. So I write - not from a medically qualified point of view - but from lots of experience. I have followed the advice given over the years on the Thyroid UK forum and from others that know more than me. Rarely a Doc :-)

    Am also wondering if you are taking any other meds that could be negating the Levo you are taking - many do - which may result in your very Low T4 ....

    b12deficiency.info/signs-an...

    bcshguidelines.com/document...

    Wishing you well .... and happy to help :-)

  • Thank you so much for the info. I feel so confused about everything. One evening I will sit down and re read everything and figure out exactly what I need to ask for at my drs appt in a few weeks.

    I have recently started taking vit D and b-complex supplements. I'm also on 50mg levo and 150mg sertraline. I wish drs knew more argh

  • kellybroganmd.com/saying-no...

    Were you really depressed or could it be due to the very low B12 and very low thyroid hormones ? No wonder you are finding it so difficult to make a plan. Perhaps the Setraline is affecting you in a negative way and causing the confusion. Docs are far too quick to pull out the prescription pad for AD's as they are awarded funding points too. They cannot make money out of B12 and Thyroid hormones - both are very cheap at source. Training at Medical School for Thyroid is very brief and B12/PA - zilch. Do read the PIL - Patient Information Leaflet of your Straline - is it contra-indicated with your Levo ?

    Low B12 is a neurological condition and NOT a vitamin deficiency. The link I posted above details all the neurological symptoms first ....

    How long have you been on 50mcg of Levo - that is only a starter dose and should have been increased six weeks after further testing. Please pop over to the Thyroid UK Forum where there are almost 50,000 of us - you will learn so much about the thyroid and the sad lack of knowledge amidst the medical profession.

    Until the 60's depression was treated with thyroid hormone T3 and still is today in some enlightened places. The brain has more receptors for T3 than any other part of the body - so if low .......

    Do so hope you soon feel strong enough to find a way to wellness ... not sure if you read my Profile but if so then you will see it can be done :-) The terrible treatment of Thyroid and PA patients today is a national scandal - and thank goodness I moved to Crete in 2004 where I was diagnosed with Hashimotos at 59 - at last !!

    :-) :-)

  • I don't believe it interacts but I was diagnosed with depression in 2012, but only got my PA diagnosis in 2014/15 and hashimotos last year. I can't remember how long I've been on 50, but I did start on 25mg. I see an endocrinologist in April which I'm hoping will have more knowledge and can help...

  • Is this Endo a Thyroid expert - or just knows about diabetes ? Private or NHS ? Louise Roberts - an Admin on Thyroid UK has a list of Private Endos who are Thyroid friendly - maybe worth checking .... April is a long time to feel rotten - but also time to have a good read and make a list :-)

  • They specialise in CFS but it's a step in the right direction. All NHS as I can't afford private

  • Once you have a CFS diagnosis on your medical notes you will have little or no chance of better treatment for your Thyroid and PA. Everything will be blamed on your CFS sadly. It is after all a Syndrome - meaning lots of things are contributing to your fatigue ..... and it is clear that you are under treated for both.

  • I will highlight this. I won't accept the diagnosis until the thyroid and PA are treated properly

  • Great news 😊

  • Sorry to hear you've been having a tough time.

    Having a coeliac test is usually recommended to eliminate other possible diagnoses and to ensure that you are monitored for things like vitamin deficiencies or osteoporosis. As you already have multiple health problems, going back to eating gluten might not be in your best interests, but discussing it with your doctor would probably be a good idea. Have a look at Coeliar UK website for advice.

    If gluten is a problem for you, it can take time for your insides to recover after going gluten free. Perhaps have a look at pre and probiotics, foods and supplements.

  • Thank you. I finally have an appointment with an endocrinologist specialising in CFS. But I'll mention the gluten and see if it's worth getting that checked, particularly because my body feels so weak.

    Just wish I could quit going to the doctors all the time! Going to remain gluten free for the time being though!

    Thank you

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