Most people only know that DQ2 and, occasionally, DQ8 genes are predictive of coeliac disease – celiac for our followers across the pond. But there are actually two more also linked to gluten illness. Someone asked me about this yesterday and I thought it might be worth a general reminder for all of you. Here’s a snippet from the Gluten Plan where I write about this and a heap load more on gluten testing (properly!) and treatment (and it is not just about a traditional gluten free diet for many).
Limited genes …looking for coeliac-only ones!
The Gluten Plan
It is well known that over 90% of coeliacs have at least one positive HLA DQ2 gene present and this is taken as a marker for coeliac disease risk. About 5% will have a DQ8 instead or as well. In fact, it is estimated that about 30-40% of the world’s population has a DQ2 or DQ8. Up to 50% of non-coeliac gluten sensitives have them too so, if you find them, it is diagnostic of a risk of developing some form of gluten illness, not necessarily coeliac disease.
Finding a gene is not enough for a diagnosis as the gene would have to be expressed or ‘triggered’ in some way for you to develop a GRD. [Gluten Related Disorder]. The presence of the genes simply tells you are genetically predisposed to it, but you might not ever trigger the gene expression. For a positive coeliac diagnosis in mainstream medicine, you would need to also have the antibodies present.
That’s all well and good until you consider that experts are now suggesting that other HLA genes DQ1 and DQ3 are also linked to gluten related disorders. Prof Marios Hadjvassiliou even believes that NCGSs:
‘may have their own HLA types that we haven’t identified yet.”
That means that a person with no DQ2s but two DQ1s would be told it was OK to continue eating gluten willy-nilly. Not true. That is, in fact, what happened to me. I have a DQ8 and 2 DQ1s.
DQ1s have been shown positive in non-coeliac gluten sensitivity which can be every bit as serious as coeliac disease. Dr Hadjvassiliou says he has found 20% of his ataxia patients are DQ1 positive and he postulates that:
“DQ1 may turn out to be the gene related to gluten neurological disorders, but we just don’t know yet. They improve on a gluten free diet.”
Prof Vojdani quotes in one of his papers that:
“Recent research…has identified at least eight new genomic regions with robust levels of disease association to Gluten-Reactivity”.
Remember, too, that Dr Marsh said he advises a GF diet for people with the coeliac genes who have symptoms even when all tests are negative. He also recommends long-term monitoring of people with the genes with no current symptoms because:
“we don’t know who will express the genes or not”.
Wise words.
Over the past few years, I have taken the view that all gluten HLA genes should be tested and I brought the test to the UK to do that for patients.
….if you have a DQ1 and skin is your main issue, in my opinion, you can safely assume gluten is a problem for you and the gene has been triggered. And, in case you were wondering… My two DQ1s resulted in myriad skin and neurological conditions – this stacks up! [Mine were migraine, anxiety, dysautonomia-based mostly]
Coeliacs mostly have HLA DQ2 genes present, with a few having the lesser DQ8. However, some experts (me included) are seeing DQ1 and DQ3 turn up very often in non-coeliac gluten sensitivity and coeliacs.
DQ1 tends to be related to gluten-related neurological, brain, nervous system, mood and skin disorders. DQ1 and DQ3 are both associated with greater risk of allergy and sensitivity syndromes.
Look at your gluten genes to see if that confirms you have the right pattern to have developed the type of symptoms you have. If you have DQ2, DQ8, DQ1 or DQ3 appear and you have neurological, skin, gut and/or allergy problems, there’s your answer. As I said, just because you have the genes doesn’t mean you’ll get it but most experts I have spoken with believe that one gene is all it takes and it probably will trigger at some point.
I hope that helps. And don’t start me off on the different transglutaminases, either! Why do they only test for one? Drives me batty. Maybe I’ll do another post on those soon, too – or see more on this in the Gluten Plan. You can also read more in the TrulyGlutenFree section of the A-Z here (there are several pages in this section so do check the menu), and join us on the TGF Facebook page where I’ve just restarted wittering about all things gluten, especially since I noticed we are now over 5000 followers there, eek – took my eye off the ball, lol!
