positive blood test, negative biopsy, b12, ferratin and thyroid

Dear all,

I've just found old blood tests results to compare with my current picture. In december 2010 I had a positive IgA tissue transglutaminase antibody of 162 u/ml (reference range less than 15) and a negative IgA endomysial antibody. A biopsy showed no signs of coeliac disease and I also had no positive response to a gluten free diet (done after the biopsy).

Montelukast stabilised my asthma and I carried on eating a normal diet except for avoiding some colours and sulphites. Fast forward to 2014 when I had a huge reaction to something and ended up in high dependency in hospital. Since then I have been unable to eat any salicylates and have reacted badly to histamine containing foods. After a lot of experimentation I found that the FAILSAFE diet mostly worked for controlling the asthma if gluten and caesin free and very very low in Salicylates (ie no apples, no carrots etc.) . Recent blood tests have shown that my B12 is low (at 146, and 144 ) and my TSH is elevated going up from 2.93 in March (non fasting) through 5.43 (July again non fasting) to 7.89 (september fasting but with gluten for 10 days before the test) and finally 9.55 November (fasting no gluten since Sept.) I am supplementing the B12 with drops (30.000% of daily amount every day) and am finally on thyroid replacement and feeling a bit better though it is early days. Can anyone comment on whether I am likely to have coeliac / gluten problems as I am due to have one of my children tested (he still eats gluten). I seem to have severe reactions to gluten and to dairy at the moment but then I have severe reactions to lots and lots of things! It would be great to be able to expand the very restrictive diet sometime as it is not necessarily good for my long term health.

5 Replies

  • Hi there, well firstly you have a lot going on so poor you.

    Now you ask could you have CD when you've had a negative biopsy and the simple answer is no as long as you ate gluten for about 6 weeks prior to the biopsy.

    However you could well have NCGS there's a very recent post about this which's well worth checking out as it says about zonulin and how that causes gut inflammation in over 40% of non coeliac.


    You also mention histamines and this came up a few times earlier this year with some interesting links so here's a link to them:


    There is also a lot of previous posts on here about thyroid issues and B12 so I'd check them out using the ''Search Healthunlocked'' box top right.

    Now what I wonder is are you allergic to something external, as many people have issues with some chemicals even innocuous seeming ones like electronic home air fresheners as parents with children with ADHD find these air fresheners trigger a reaction. Some people have an allergy to formaldehyde usually after exposure to it and chemical allergies like this often cause a rash/gastric issues. And raises histamine levels. So I think you might benefit from looking at environmental factors/allergens and I'd ask your GP about this.

    The other thing that I find interesting is you have a reaction to diary, as many coeliac have issues with dairy and especially before their villi recovers as the enzyme that breaks down lactose (lactate) is produced at the tips of the villi.

    And lastly good luck with all this and the testing of one of your little ones and if they are positive then we have other members with coeliac children and they'll point you in the right direction

  • Jerry's advice is spot on. And on the subject of allergic reactions my mate's dog almost died because his wife was using "sprinkle" and vac (you get the pic - I don't want litigation!) in its bed and all its hair fell out! Formaldehyde is wicked stuff and could be in loads of your products.

  • Thanks for your replies. Yes I'm sensitive to lots of environmental chemicals and have very carefully made my house as fragrance free as possible (washing powder, washing up liquid, leaving any new fabrics and furniture in the porch with the window open for 6 months to off gas etc.) It does help but is rather a tightrope and some days anything will set me off! My nasal tissues are very swollen which means I have absolutely no sense of smell which makes avoiding fragrances very very hard!!

    I will look up the references as all the reading has helped and I am getting somewhere and generally feeling a bit better though it is two steps forward and one back quite frequently!

  • Hi bd79og

    When do you take your Levo, morning or other time!

    Do you take it on an empty stomach?

    Do you also take it with a LARGE glass of water, which washes it right down your digestive tract and not leave it halfway in your gullet to slowly dissolve!

    Do you also leave a minimum of 1 hour before you eat or drink anything else.

    I was diagnosed as Hypo in 2000 in UK and been on Levo ever since. Like you never had problems eating gluten, not that I ever ate much of anything, except my morning cereal! Small lunch and small dinner. Did start feeling bloated when eating French baguette every lunchtime.

    2 yrs ago I weighed 83 kg, I thinks that's about 13.5 stone todY I'm 58 kg. My Levo wasn't working properly, because I wasn't doing the things I asked you above. Also other reasons but at least having lost the weight, my metabolism is working properly now this year. My weight is stable despite I have a couple of small glasses of rose a day, I smoke and I eat a mars bar! But I do have my appetite back,I want to eat, my gastric juices have started working again, thanks to a natural remedy I take,mths the contains ginseng and, Royal jelly and a couple of other things. still only v small portions., but they are sufficient!

    I've only been on the natural remedy about 2 weeks, it's given my 'gut' a good clean out and just this week, I have a sandwich every day! After 20 days I must stop taking it for 10, then start the regime again, I will continue this system, which the pharmacist recommended, for a total 3 monh course. I buy in France but think it would be available in many countries Arkopharma is the manufacturer and their website can be read in several languages.

  • Your B12 levels were very low and this can be serious if not treated - what many GPs consider normal results are not, as "deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml." - 'Could it be B12?', a book by Sally Pacholok and Dr J.J. Stuart.

    It looks as though you are in at least two high risk groups for PA/B12 deficiency with thyroid disease, coeliac with allergies to dairy, etc.

    Here are links and an excellent film and more links you may not have seen:



    The above BMJ research document is supported by many research papers and has a useful summary if GP won't read the whole document. It also tells GP that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters....

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