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Lboo25
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Lboo25 Newbie
Lboo25
Posted

Hi 

I am hoping to get some advice if anyone has been in a similar scenario. I have had issues with GI symptoms since my teens and tested for coeliac at the time which was negative and told it was IBS and no help how to manage it. As I am anxious about the doctors, I have tried to manage for the last 15 years, however have severe anxiety about going out for food in case of any GI flare up. Last year following the diagnosis of my mum being coeliac, I decided enough is enough and spoke to my doctors again. I was tested and IGA level was high 3.3 (0.8-2.8) and IGA TTG was <1.9 (0-19.9) so the doctor disregarded the results as the IGA TTG was normal and again just a case of writing a food diary which I have started. The last two months have been especially hard with my symptoms and I decided to buy a York Test food intolerance test kit which tests IGG. There are mixed reviews on their benefit and accurate but I need to do something. My results are a high reactivity to wheat, egg white, cows milk, egg yolk and gluten and should eliminate these from my diet immediately. 
 

I really hope someone has some advice on my situation or been in a similar situation and what happened / any further testing that may be indicative. 
 

thanks again Laura 

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trents Grand Master
trents
Posted

Since you use the term "mum" I would assume you are in the UK. It is unfortunate that only the total IGA and the tTG-IGA were run as there are other celiac disease tests that can be run. About 20% of people with white European descent who do have celiac disease will test negative on the tTG-IGA as will 80% of those with black African descent. A full celiac panel will be more likely to catch those missed by the tTG-IGA. Here is a primer covering the tests that can be run: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

You also may have NCGS (Non Celiac Gluten Sensitivity) for which there currently is not test. Celiac disease must first be ruled out. They share many symptoms but NCGS does not damage the small bowel villi.

Food sensitivity testing can be helpful but it can also be misleading as their are usually false positives. The trick is sorting out those things that you actually are reacting to in real life which calls for an elimination diet.

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