In denial

[goodtochat]

Hi there, I'm new on here and have joined the group to hopefully help me along with my Celiac. I was diagnosed approx. 2 years ago and to be honest it was a total shock. I do have other health issues and niggles and slowly I am thinking if I actually stuck to the GF diet I could be a different person. At the moment I am tired, down, my brain is foggy, my skin is dry....the list goes on! I have an Underactive thyroid, which is controlled by meds, suffer from Lychenplanus which is very painful, have RLS and have just been diagnosed with Osteoporosis for which I am now on meds. I get determined to do the GF diet but just don't stick to it and go back to a normal diet. On the outside the normal diet doesn't affect me really and I sometimes wonder if I've been incorrectly diagnosed!

[Hidden]

hi there - I'm almost (though not really) jealous of your ability to misbehave with gluten I'm so terrified of it (and the results are so very unpleasant) that I can't begin to imagine it. Tho I do dream longingly about a pint of real ale often.... And a fresh doughnut on Brighton pier and... etc etc

You don't really need me to tell you you absolutely MUST stop being tempted do you? It really will make a difference to your health (it just might be a slower, less dramatic than those of us who get obvious gut or other problems). Your osteoporosis if not caused by the coeliac will really not be helped by your eating gluten, ditto the RLS (that's one of the things that drives me mad if i get glutened). The brain fog is almost certainly a result of the gluten, also the tired and down feeling (which was what drove me to the docs in the end).

And I'd never heard of Lychenplanus before but after a swift google, I assume you've had a definitive diagnosis have you? There's no chance it could be DH?

And I'm going to be stern and say there is no way you've been misdiagnosed with bloods and a biopsy

Anyway, just saying hello really. You will get there - there's lots of good advice on here (and its also ok to have a moan sometimes).

[goodtochat in reply to Hidden]

Thank you for your reply and yes I know you are completely correct. I came on the site for advice and hoping for a telling off to make me come to my senses and today has been the start of my GF diet! Yes I was diagnosed with Lychenplanus after a biopsy. All in all in need to behave and I think staying on this site will help. I've had some wonderful support. Thank you all.

[Lisahelen]

Im a silent coeliac so like you dont have any outward signs of damage- or so i thought! Having been gf for a year and a half my gums/ teeth are so much improved no wobblers now and no more having to be removed. A fungal thing going on on my toes has gone without any treatment. I would never have associated them with gluten.

The things you have listed as health problems could more than likely be helped if you did concentrate on going gf. Many people on the thyroid forum will confirm that going gf has helped.

If you seriously think it was a misdiagnosis and you are still having gluten containing foods why dont you ask to see if they will retest you.

[Sweatyfaced]

Pretty much everything you've listed sounds like it would be exacerbated by gluten in your diet, especially the tiredness.

Two years and a bit into a completely GF diet and my life has changed, stuff I never associated with coeliac disease is better and I can do things I never thought I would do. Plus actually, after a while you get used to the diet and there is very little you really miss. Most things have substitutions available and you'll discover new things you love!

I am totally loving Vietnamese food right now (cuisine which seems to be completely GF!) plus have just come back from a week in Italy where I was able to eat what I wanted in every restaurant with some small alterations just be saying "senza glutine" everywhere we went. You really do get used to it once you have seized the bull by the horns, it really is ok, I promise!

[goodtochat in reply to Sweatyfaced]

Thank you and I have today started to try to remain GF. In the past I have felt a little lost and haven't received much help but this site has hopefully encouraged me to become a sensible and responsible person. Thank you and good luck yourself

[Sweatyfaced in reply to goodtochat]

Check in and let us know how you're doing and if we can help more. None of us are health care professionals but we have (virtual) ears so can listen and let you know what worked for us. I would say best of luck, but you really don't need it, it's trial and error and you'll get there! Xxx

[Marz]

Am wondering about your Under Active Thyroid ? You say it is being controlled with medication. I am sure it is but is it optimally treated ? Do you have any recent results you could share with ranges ? - it is possible you have Hashimotos which is auto-immune. This causes many issues including gut problems. What dose are you taking of Levo ?

I have been a member of Thyroid UK here on HU for six years having been diagnosed with Hashimotos back in 2005. It was not until I was gluten free and all vitamins and minerals were optimal that my thyroid results improved. Gut issues prevent the uptake of the vitamins and minerals needed for the T4 you are taking to convert into the ACTIVE thyroid hormone T3.

These are the tests you need - TSH - FT4 - FT3 and Thyroid Anti-bodies TPO and Tg. The T4 you are taking is a storage hormone and must convert into T3. So you will need to test B12 - Folate - Ferritin - VitD - if any of these are low in range then you will not benefit from the thyroid hormone you are taking.

thyroiduk.org

The above link will help to understand the thyroid - the tests required - Private Testing - understanding results and so on. You are legally entitled to all your test results from your GP - so you can check what has been missed and monitor your own progress.

Which meds are you taking for the osteoporosis ? Calcium is not always the answer as it is involved in the breaking down of old bone and not the building of new. Have you researched the side effects of the meds you are taking ? Dr Sarah Myhill covers Osteoporosis well on her website with the suggested supplements needed ....

drmyhill.co.uk/wiki/Osteopo...

b12deficiency.info/signs-an...

Scroll down in the above link to read of the neurological signs of B12 deficiency.

Iron/Ferritin/folate - if low are often involved in RLS. You could also try magnesium at night.

Sorry for the long reply - happy to help

[goodtochat in reply to Marz]

Thank you for your advice although very confusing. I think my main problem with my health is my diet and not sticking to my GF. I have had some fantastic help and support from this site and intend to stick to it and hopefully see some results. I am due a thyroid function test on Thurs funnily enough!

[Marz in reply to goodtochat]

Being gluten free is a huge help in our quest for health. Hope you get the correct testing for your thyroid - rarely done on the NHS.

You could take a peep at the Thyroid UK Forum here on HU where there are over 67,000 members battling to get the correct testing and treatment - resulting in other conditions.

Hope you obtain your test results and ranges for the thyroid - happy to help. The TSH needs to be 1 or under - the FT4 & FT3 in the upper part of the range. Do you have thyroid anti-bodies - Hashimotos ?

Hope all goes well.