Hi, I was tested for ceiolac years ago and was found to carry the antibodies but show no signs of the desease

[lonewarrior]

I had the biopsy on the duodenum, said I was clear

im all washed out at the moment, I have leiden v , had 3 clots one in calf , one in groin one in lung.

on warfarin for life, thyroxine just been increased , and I carry antibodies for ceilioac.

Diagnosed with fybromyalgia too.

Are all these connected, do ineed to see an endio?

Feel crap at the moment , every part of my body hurts, mood swings, ect , feel like a xteam roller has run over me.

any help would be appreciated

[Clutter]

My understanding is that coeliac is a life long autoimmune condition. Being gluten free for so long will have allowed your villii to repair ( most cells are completely renewed every 7-ish years). As you will still have the dormant antibodies reintroducing gluten will give them a target and your gut problems will begin all over again.

I'm convinced there is a connection with fibro and levothyroxine. There most definitely was in my case. You may benefit from a referral to an endo. In my case being under the endos inhibits my GP and prevents me building a thyroid treatment relationship with GP.

If the endo is a thyroid specialist and not just a diabetes specialist that would be a different thing altogether.

[Faquestions]

Hello Lonewarrior, I'm sorry to hear you are feeling rough :-(. I'm new to this site, and I'm also a relatively new Coeliac diagnosed as well (July this year)

As I understand it, any TTG antibodies mean your body is reacting to Gluten, which is coeliacs disease. The biopsy can give various results, I'm guessing yours didn't show damage to Villi but that does not mean you do not have the disease. Please ask to be tested again, but keep eating Gluten products for now otherwise you will likely get a false negative result, your specialist should be following this up. H x

[MaryF]

Hi there, and in agreement to APsnotFAB above, Hughes Syndrome Sjogrens and Thryoid Issues often get missed, as the underlying and often not picked up ailment is Antiphopholipid Syndrom/Hughes Syndrome. Please join Hughes Syndrome Foundation forum on this platform, and also stay on this one for your Thyroid issues. Many of us with Hughes are on TUK and vice versa. Also our charity website lists under self help specialists across the UK who understand the condition, this is crucial by the way. NHS and private practitioners listed. hughes-syndrome.org/

The HU forum can be accessed thorugh there or on HU itself. I am gluten free also, although I do not have Coeliac Disease, you can still have pretty serious symptoms with gluten: bmj.com/content/345/bmj.e7982

MaryF x

[lonewarrior]

Thanks for all the info .Wow I have a lot to digest here, excuse the pun.

Seems as though my immune system is shot to bits

Docs have been telling me for months that it was my fybro playing up .

Then a primary preventoon blood test showed my thyroid was playing up and levo needs upping.

Was years ago when I had the biopsy.

At the moment they pumping me full of gabbapentin tramadol dosulpin levo warfarin atorvastatin omepresol

They just keep adding the pills.

[MaryF in reply to lonewarrior]

Hughes Syndrome, Sjogrens and Thyroid problems, the well recognized trio! MaryF x

[MaryF in reply to MaryF]

Professor Hughes was head of Rheumatology at St Thomas's and discovered Hughes Syndrome decades ago, on retirement from the NHS he went of to head the London Lupus Centre at London Bridge. He regularly blogs on Hughes Syndrome Foundation forum, here is a blog that you will find interesting: healthunlocked.com/hughes-s...

Mary F x

[Jackie]

Hi Y es, I would definitely see an Endo,but research one yourself and find a really good one. Then ask for a referral. For the Caeliac disease it does not always show,in any test. If you think it may be this, the only good way to find out is to follow the diet ,exactly for 6 weeks, and then see how you feel/are. .Several consultant have published this, my own Endo, from her research had an article in the BMJ last year in November.It ids an autoimmune disease, so you may well have others too.

For the thyroid, basic tests must include TSH, T4 and Free T3 with ranges ( all differ), for a proper diagnosis.

Best wishes,

Jackie

[Marylyn]

I would be getting Vitamin D checked I thought my bone pain was severe my levels were low started taking Vit D pain left.I would be also checking B12 mutation factor,homocysteine if positive can be cause of clotting,heart disease related.Good luck keep on striving to get answers.

[lonewarrior in reply to Marylyn]

Never . give in, never surrender.

Now I have some idea where to start and what to ask for.

Thanks to you all for the replies

Bill