Frequently Asked Questions Find everything you need to know about coeliac disease, the gluten free diet and the work we do.
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I’ve been on a gluten free diet for over 5 years but at my annual review my GP said my antibody blood test was positive. Is there anything other than having gluten in my diet that could cause a positive blood test?
Well, it depends a bit on which antibody test you refer to. The most frequently used is IgA against transglutaminase 2 (TG2). If that has been negative and now is positive, it indicates you are exposed to gluten. Are you well clinically? Have you had a repeat biopsy?
Does anyone in the research team have coeliac disease themselves?
Not at the moment, but we are several individuals with the DQ2 or DQ8 HLA types and several of us have close relatives with coeliac disease.
My 6 year old son has been diagnosed for 3 years and despite being on a strict gluten free diet and our home is completely gluten free his ttg levels remain high at 128. His paediatrician and dietician aren’t concerned as he is thriving and non symptomatic compared to pre diagnosis, where he was vomiting daily, dramatic loss of weight, fatigue etc. Should I be concerned as to why it isn’t coming down quickly?
This is a hard one to reply to as an adult gastroenterologist.
It is very good your son is doing better. I (Knut Lundin) have had that question several times and actually it seems that some people have persistent antibody levels. Why that happens and what to do about it is uncertain. In some cases it does turn out to be ongoing exposure to gluten. A test for gluten peptides in urine and faeces has been developed, but is not yet widely used, mainly in research.
We are exploring these tests in our Coeliac clinic and we do have some people with a positive test indicating exposure to gluten, although they consider themselves to be adhering to a strict gluten free diet.
Do people with coeliac disease need to self isolate?
Self isolation is for when you have symptoms of coronavirus eg persistent dry cough and or high temperature or if you are age 70 and over. For further information on self isolation please see the Government website.
Do people with coeliac disease need to practice social distancing?
Social distancing is recommended for everyone to limit contact with others so you reduce your chances of contracting or transmitting the disease. The Government guidance currently is that social distancing should be in place for everyone. For the latest information on social distancing, please see the Government website.
I have coeliac disease and have been offered the flu jab in the past. Do I need to self isolate?
Unless you’re having symptoms eg persistent dry cough and or high temperature or you’re over 70 then you don’t need to isolate, but like everyone you need to apply social distancing. This means staying at home as much as possible and avoiding other people and busy places. See the Government advice on this.
I can’t find any gluten free products in my local supermarket, including essentials like gluten free pasta and flour. What can I do?
If you're struggling to find gluten free products at your supermarket, we advise you to:
- ask your store manager what time they receive their gluten free deliveries and go to the store then
- try local convenience stores
- try mail order companies to see if you can get food delivered
- try local suppliers who might be better stocked in their produce
If you're venturing out, please make sure you follow Government guidance to avoid risk.
If there is no gluten free food available at the supermarket, will it become available on prescription?
Gluten free staple foods are available on prescription in Wales, Scotland and Northern Ireland. Gluten free bread and flour mixes are available in some areas in England so check availability here. In areas of England where access to gluten free food on prescription has been restricted, it is unlikely that local policies will be reviewed at this present time.
What is Coeliac UK doing to help people manage their gluten free diet during the coronavirus pandemic?
We continue to work with our Health Advisory Council to make sure we’re giving you the best advice in line with Government guidance. Please keep an eye on our website and social media for the latest updates. We also continue to work with food manufacturers and retailers to ensure availability of gluten free food for people with coeliac disease throughout the pandemic.
Alongside this, we've created resources to help our gluten free community keep living well gluten free. We've also developed new digital support tools for those recently diagnosed, and information on how to keep busy and cope with loneliness.
We’re doing what we can but if you can think of anything that would help you, please let us know by clicking here.