Sticky Blood-Hughes Syndrome Support
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Celiac Disease causing Neurologic Symptoms

I found this link over on the very useful Gluten Gorilla's Forum and immediately thought "hang on there are a few similarities here". I wonder how many of you will think the same after reading this!

I have to say my first thought was...... I wonder if the neurologist bothered to test any of the patients in the study to see if they had Hughes? Either that or it makes me pleased I decided to go GF this year!!

6 Replies

I'm a coeliac sufferer, and sufferer is the right word. I was told a long time ago by my haematologist that APS goes hand in hand with coeliac disease. It is because we do not absorb food properly until I was diagnosed as being gluten intolerant but I still have problems because of vitamins d and k and calcium. All of my problems are caused by APS but coeliac is at the root. Unfortunately


I was never formally diagnosed with Celiac. Went gluten free, as a consequence of trying the Atkins Diet. I had been suffering from chronic fatigue and brain fog and a friend suggested I might be eating too many carbs. To my surprise, my GP urged me to give the Atkins Diet a shot. " it can't hurt and it might help, and we'll run extra blood work since the diet change might effect the INR.". To my slack jawed amazement my energy levels exploded on day 1of the diet ( as in--I hiked miles over steep terrain, cleaned the house and stayed up until 11.). After a week of these unbounded energy levels I checked back in with my doc and we concluded this had to be a gluten issue. Subsequent CBCs showed normal hemoglobin and hematocrit levels for the first time since I was age 4! blood work also showed that while I still had APS, a lot of those rheumatoid factors had also dropped to normal. So . . No colonoscopy, I had been gluten free for 6 weeks before the GTT was run, ( negative,) but every doc I have agrees I have Celiac, or gluten intolerance, or something based on those blood work changes.

I do not know if the Celiac " caused' the APS, but it sure sounds plausable.


Prof Khamashta and Hughes both advocate GF diets as they see many patients with APS that although dont test positive to Celiac but are Gluten Intolerant (like myself). I now find that if I have even the smallest bit of Gluten or something that is based on wheat like dextrose or glucose syrup, I get very ill and it takes me ages to get over it.

Its difficult to know what starts what but I read something once thats says that if don't test positive for Celiac but have Celiac tendencies and you continue to consume wheat and Gluten, the damage it does will mean that you are more likely to go on to have autoimmune conditions in later life. I wish I had saved that article now and if I ever find it again I will post it on here.


Interesting I think I ill try it, must eat the biscuits I have in the cupboard first. I was begining to think I might be sensitive to yeast, but it may be Gluten as I have noticed I am much more tired when I have eaten a lot of bread

Thank you


You made me giggle Daisy - thats exactly what I would have done in your place - gobble up all the biscuits first!! :-) Dont get too disillusioned though there are some really nice GF things out there now and some lush stuff about to come on soon.

I went to the celiac UK AGM because they were having a food fare with lots of tasters and freebies from new companies of GF goodies. Ive kept the names of some really gorgeous stuff and have ordered some online already. You really can eat almost normally. Im not saying that when I go into Waitrose and see all the freshly baked bread I dont miss it, but if it went in my mouth the result would put me off for life and remind me that I have to hate it now more than ever. :-( I have to just enjoy the smell for now......


Prof K has never suggested a gluten free diet to me but I will mention it to him when I see him in November.

Interestingly I feel better when not eating much gluten. I also feel better when I follow a vegan diet.

Very good idea to eat up the goodies first.


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