Sticky Blood-Hughes Syndrome Support
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Professor Khamashta and Gluten


I have APS (actually most of my paternal family has APS). I'm curious about the posts mentioning Professor Khamashta advocating a gluten free diet. I'm not doubting it, only he was my doctor for a number of years, and I never heard him once mention it. I was also a private patient of his, and we had more time to talk, and again he didn't mention it. In his many articles I can't find mention of gluten

I am, however, intrigued, especially as I have raised levels of IgG antigliadin antibodies (indicating gluten sensitivity).

Therefore, could anyone who has heard Professor Khamashta firsthand talk about gluten tell me exactly what he said.

Just to end on two positive points:

1. APS with CVA, multiple cerebral infarcts, DVT, memory loss, migraines etc. Strong family history of early death (30s) from catastrophic APS, hospital visits all the time to St Thomas's, plus regular in-patient stays in my home town.


Warfarin plus hometesting machine plus five day a week vigorous exercise and diet has changed my life. I see a consultant for a once a year routine check now. No hospital stays / visits for over four years.

2. Anyone considering Professor Caroline Gordon and her team at the Lupus Centre of Excellence, City Road Hospital, Birmingham, would be wise to do so. Just excellent, sympathetic care, and she really goes after non-specialists who mess with her patients.

3 Replies

Hi and welcome, I think it is usually Professor G Hughes who mentions this in passing, I am gluten free also, made a huge difference to me. Good to hear you have such good care, thanks for sharing. MaryF


Hi and so glad that you have had such a positive result with warfarin therapy.

With your positive blood test you are correct in assuming that you should be looking at stopping Gluten however I urge you to think about getting tested first for Celiac Disease. With that positive test there could be a chance that you have CD and you should be tested BEFORE you give up gluten. If you have undiagnosed CD and you continue to consume Gluten you will cause damage to your gut and will not absorb nutrients properly leading to anemia. You can also risk getting osteoporosis.

Mary is correct it was not Muntha but Prof Hughes who advocated Gluten was stopped. However I also saw Muntha and he agreed with this when I asked him and would always say "good good!!"

CD is also linked to Thyroid Disease so you should get your Thyroid closely delved into not just the unreliable TSH. Thyroid, APS and Sjogrens come as a trio quite often with CD as an off shoot. Prof Hughes once drew me a chart of the linked autoimmune conditions. I have them all unfortunately! They have all come on slowly one by one. If you can get tested for CD but no matter the result do try to give up Gluten, its toxic!


Thank you for the reply. I've had a celiac screen, which was negative. But my gluten sensitivity screen came back mildly positive. Thyroid is fine. That's tested often.

Also, I have extremely high IgE antibodies from casein (milk protein), although I'm lactose tolerant. Casein is triggering an autoimmune response, more so than the gluten, and in fact seems to be a trigger for memory problems. I feel more patients with APS should be checked for casein response, as it's a known autoimmune trigger. Too often people find that they are fine with lactose and assume dairy products are fine for them.


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