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Sticky Blood-Hughes Syndrome Support
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Do You Have A Food Allergy, Intolerance, or Food Related Illness?

I think this survey will be of interest to many on this Forum.

If you have a food allergy, intolerance or food-related illness, please complete this short survey:


Please also pass this onto anyone else that you know who suffers from food-related illnesses.

This survey is being done by a company called Think Free Ltd who will use the results to help them with their grant funding. So far they have had a really good response, the early results are showing patterns already - once they get a few more responses (to make it statistically significant, they will report on the outcomes). Early trends coming out are that milk is one of the biggest trigger foods, that respondents suffer from multiple immune/food problems and that there is a high level of dissatisfaction with caterers and food manufacturers.

5 Replies

Interesting!....I will have a read of that in a bit!

I have allergies to some fish......& for ages have problems with eating without parts of my stomach becoming very painful & cramping....already have had my gall bladder out, on & off food all the while & for the last 2 months struggling to eat anythin due to the pain I'm in with it!!!! still waiting for a scan for it!

Ok I'll take a look later.................


Suzy try cutting out Gluten.

Prof Khamashta told me that lots of Hughies are Gluten sensitive but dont have positive results for celiac although they think there is a link. I was recommended to go on a GF diet in February when I was having a lot of stomach pain and it all cleared up within a few weeks and I have had no problems since. Interestingly I have lost about a stone in weight since then too.

Last week I was accidentally glutened when my hubby bought something from waitrose that had it in it that Marks variety does not. within an hour I was ill with the same symptoms which proves that it is the gluten that affects me.

The other interesting thing is that I have been stubbornly seronegative for APS but since going GF I am now strongly positive. Somebody on one of the threads on here told me that there was a connection - very weird.

Im finding some really nice replacement foods and TBH it really has not been that big an effort to cut it out although I accept that if you have a young family or entertain a lot it may be difficult.


I have mentioned all this sort of things to my docs & they dont think it's an issue? they tested me for celiac disease & that came up fine too??

I shall mention all these again next Monday when I see one of my docs that I can talk to really well x


Perhaps do your own little trial by cutting out Gluten for a few weeks and see if you feel any better. Its not unusual apparently according to Prof K for us to have negative results for Celiac but then some people who do have it quite often have a false negative.

Hope you feel better soon :-)


I have a problem with wheat rather than gluten. Oats and rye are fine but anything with wheat in gives me terrible IBS symptoms.


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