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

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

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  • 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.

  • 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

  • Hi Lonewarrior, Im sorry you are feeling so rough and I m not surprised. Unfortunately your conditions are all connected. I have APS - Antiphospholipid Syndrome (Hughes Syndrome, Hashimotos, Sjogrens and NCGS. I too was originally diagnosed with Fibro but this was changed when I was told I had Hughes and Sjogrens after a stroke. Prof Hughes says that Fibro symptoms are often confused with Thyroid or Sjogrens symptoms and Plaquenil is prescribed and often helps with that side of things.

    Recently there was a Gluten Summit where the leading Gastroenterologists, Neurologists, Cardiologists, Paediatricians, Nutritionists etc came together to talk about the latest research in Gluten and Celiac Disease, NCGS and how it affects us. What they say is that they now know they you don't have to have a positive biopsy if you have the antibodies to be diagnosed with CD. This is because the biopsy could have been flawed or they didn't take it from the right place etc. They should have put you on a Gluten free diet and advised you to stay off Gluten for life.

    I don't know how long ago you had the biopsy but If you are eating it now before you stop I would go back to your Doctor and ask for an immediate referral to a gastro so they can do a proper diagnosis as they know so much more about this disease and the connection to other autoimmune diseases.

    You can also go over to the GlutenFreeGuerillas site here on HU were you will get more advice and also to my community Hughes Syndrome Foundation where, if you post a question you will get some others who have Factor V Leiden. Getting a specialist who understands your autoimmune condition and the connection to all the others is very important. We may be able to point you in that direction with our list of specialists.

    Good Luck whatever you decide to do.

  • 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

  • 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.

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

  • 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

  • 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

  • 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.

  • 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

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