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Purplemummy added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsAssuming Possible MisdiagnosisHello 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 .
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