APS and coeliac disease

[debatwistow]

Is there any correlation between APS and coeliac disease? I have some symptoms that seem to be coeliac related (according to the UK website). It says that this disease is also autoimmune. Currently waiting to see specialist.

[MaryF Administrator]

Hi, Yes there is a relationship between Hughes Syndrome/APS and Coeliac Disease and some of us are just gluten intolerant, I completely avoid it and lost quite a few disabling symptoms. MaryF

[debatwistow in reply to MaryF]

Thank you MaryF and everyone else who replied. It's very much early days for me with regard to the digestive issues. I have had APS for about 10 years after sagittal sinus clots and am on warfarin (INR3.5 ish) and hydroxychloroqine. I've had a rotten winter so far with what feels like a constant flare up of aches, pains and headaches but now am having a lot of digestive issues which the GP thinks might be diverticulitis. I have diarrhea on and off and a funny sensation in my lower bowel, no blood or constipation. Have just done a home coeliac test which was negative. I have always had goats milk and cheese but might try gluten free to see if it makes a difference. Have got a referral to colorectal clinic at the end of Feb and my next appointment at St Toms in May so hopefully I might have some answers then.

[veganworld]

I have had loads of digestive issues. I now eat not only gluten free but have changed all dairy to goats i.e. goats milk, goats cheese, butter etc. If I eat Gluten for an odd day I am okay but its when I eat it for three days or more I have very noticeable symptoms. Avoiding it completely makes me feel much better. I convinced myself that if I could eat it for a day or two then it was impossible for me to have an intolerance but I guess its not that cut and dry. Once you find alternatives you don't miss out, but you need to avoid it completely to improve your symptoms. I have been tested and I have not got coeliac disease but none the less it helps me so much I don't touch it.

Kaz

[GinaD]

I was diagnosed with APS in 2001 after months of mingranes, and "panic attacks" which MRIs revealed to have actually been full blown mini strokes. I was put on warfarin and those migraines and panic attacks disappeared. But the intermittant fatigue, aches and brain fog continued. Then a friend nagged me into trying the Adkins Diet (which is actually gluten free.) I felt better within days! At a follow up with a gastroenterologist, a gluten tolerance test was negative -- indicating I did NOT have Celiac. But my brilliant neurologist ordered follow up blood work with rheumatological assays. And all those "Ig" numbers, which had been sky high, fell to "boring" levels. AND, for the first time since age 4, I was no longer anemic! I could, at age 50 zoom up hiking trails which had once compelled me, at age 20, to take frequent "breath" stops. So -- as for me: Yes there is a correlation! I remain on warfarin, but back in 2001 I needed an INR or 3 to be clot symptom free. Then, in 2004 after going gluten free I had no symptoms down to 2.5. Then, after consulting with Cleveland Clinic's Functional Medicine department and reducing my carb intake (and discovering an allergy to cashews!) I am symptom now free with an INR as low as 1.7! And all those "Ig" numbers continue to stay at the "boring" level! (I like boring numbers!)