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About Purplemummy

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  1. Hi , I am in the UK & my son tested positive for coeliac by blood tests - My children have Diabetes & coeliac disease is linked with that - so is part of my childrens yearly blood testing ..... The professor ( who also works at Gt Ormond Street London as well as our Hospital a mile away ) said that we did not need to have endoscopic samples. That the blood test were enough ( we tested twice to confirm ) . My son grew 5 cm in 3 months ... He was 7 at the time .... Yes it was very sad as he had few symptoms so it was difficult for him to understand ..... But he sure loved being taller .. Regards
  2. Thank you . I have requested copies of all tests & results re coeliac for Son L . They do yearly tests as part of Diabetes profile but I certainly don't think they include all the ones you mentioned . We are back in hospital on Tuesday for 36 hours re Addisons disease So I can beg & stamp my foot for any not done .Well basically ask for complete list that you mentioned . What are your thoughts on HLA DQ2 / DQ8 genotype ? I have found that I could get that done privately but it is nearly £ 200 . Although I am pretty anxious about a positive result ... Regards
  3. Dear Everyone , Thank you for your helpful comments. I how need some advice re my Son L ( see below ) younger son already has coeliac disease plus Type 1 Diabetes Pernicious anaemia , low - iron , vitamin D , iron , ferritin , folic acid . So Son L - I wonder if he has sub clinical coeliac disease . He eats full gluten containing diet ...... & would go completely crazy if he is diagnosed , so it is important for the tests to be as correct as possible . First Son - Child L ( male 16yrs ) Type 1 Diabetes , Addisons Disease , Pernicious anaemia , low - iron , vitamin D , iron , ferritin , folic acid . Latest result October 2012 Tissue Transglutaminase 0.7 ( range 0 -6.99 ) Interpretation Negative . Please could you explain what the above result means ...... does the result have to go over 6.99 to be coeliac ? I don't quite understand how it works . I also found this snippet of information on University of Chicago Celiac Disease Center Which I wondered whether applied to me & my boys ? "Does this apply to you? It is important to note that some people with Type 1 Diabetes, Hashimoto’s thyroiditis and autoimmune liver conditions can have a falsely positive tissue transglutaminase test. For this reason, it is important that tTG test results in people with these conditions be checked with the EMA test. The physician may nevertheless want to obtain an intestinal biopsy if clinically indicated, even if EMA are negative. One More Thing… People with IgA deficiency require a different version of the antibody tests listed above. The tTG and EMA tests have IgG versions and these tests will then be accurate for someone with IgA deficiency. +++++++++++++++ IgA deficiency is diagnosed when someone has a total serum IgA test and the results are very close to zero. +++++++++++++++++++++++++++++ This is not a test for celiac disease, but a means to make a more accurate diagnosis." So would that mean my son ? & possibly me on my test from ( 2007 ) I have have been doing soo much medical research this last 6 months re Addisons Disease & Pernicious Anaemia & Vitamin D blah blah blah I have slightly lost the plot on some avenues .... Coeliac being one of them Note for people based in the UK Deamidated Gliadin Peptide IgA and IgG is being considered by Great Ormond Street Childrens Hospital But is not currently available . Regards
  4. Hello from the UK . In 2007 my youngest son was diagnosed with coeliac disease this was via a yearly blood test ( both he and his older brother have type one Diabetes ) . So as coeliac disease is linked it is checked along with thyroid function etc every year . In more recent years children now diagnosed with pernicious Anaemia & Addisons disease ...... I expect additional autoimmune conditions to crop up soon . My son did not have a biopsy was just re tested for Coeliac Disease - positive again. He grew 4 cm in 3 months once diet started . I took myself to GP and requested Coeliac testing as well for myself .... I have Vitiligo & lichen sclerous ( both Auto immune conditions ) . I was told results were clear . However I recently requested copies of the Coeliac test from 2007 when I collected some other recent tests results . This is what is written which seems very unsatisfactory & from a lay mans point of view looks like test is incomplete . ==================================== " Ser tiss transglutaminase lev" , 1 U /ml ( 0 - 15) A negative tissue transglutiminase screening test does not exclude coeliac disease in IgA deficient patients . Serum IgA levels ( Clinical chemistry ) should be measured to detect IgA deficiency . " Anti - gliadin IgA " Test no longer available " Anti- gliadin IgG level " Test no longer available . ====================================== So it looks like only one test was carried out , in which case I am really angry ....... This Gp surgery have made numerous errors over the years & I barely go to see them anyway & reduce prescriptions all the time .... they seem to think Diabetes goes away ...... ============================================== Please could you tell me exactly which tests should have been carried out ? =============================================== I am unsure what to do at this point because I have been on a gluten free diet since my son was diagnosed to give moral support to him . Some gluten will have slipped into my diet here & there as I have been slightly less vigilant for myself over the last year . But only in terms of restaurant food trace amounts ( soya sauce etc) or toasting gluten free bread in normal toaster . ( I am however super strict for my son though ) . I would never eat bread , cakes , pasta etc . So I am sure if I was tested now all tests would come back negative . I am presently impressively anaemic , plus low ferritin , Vitamin D barely registing , Low B12 ( awaiting Active B12 results ) . I am a single parent to my boys with their complex & increasing health needs ..... So my stress levels are extreme .... any vitamins go in & straight out just to keep me standing up .