Sticky Blood-Hughes Syndrome Support
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hELLO, WELL, I WAS DIAGNOSED WITH IBS MANY MANY YEARS AGO AND THEN FOR THE LAST YEAR IT SEEMS TO HAVE GOT WORSE ON EATING. I HAD AN ENDOSCOPY (4th one this year) and they found that I have ulcers once again. The Heptologist thought that it may be an ulcer that was causing the tummy pains etc as before, but he happened to mention that APS patients have a problem with clotting of gut - I did not press him further as I had been waiting for so long and you could feel that he did not want to go further with this, so I thought I would bring up with ST next month. Has anyone had / have problems with their tummy after eating?

13 Replies

Hello there, it is a very good idea that you are bringing this up at St Thomas' where they will have a clear understanding of this. I have read widely that some patients with APS do have this.

On Professor Hughes blog, if you scroll down, there is a case involving this.

and an article here for you.


I am sure others on here, will have some knowledge of this.

Mary F x


Yes I gets me sometimes so I only have one very small meal once or twice a week!! because I darn't eat anything!!

For example: in the morning: a bowl of cereal, Afternoon: a biscuit or soup, At night: another bowl of cereal or a piece of toastl.

If I'm lucky I can get away with the odd snack or saucer full of a meal.

Sometimes when I eat I'm fine......but it's when it affects me I get put of eating a meal again:(

I can go months where I can eat...then it all starts again!!

I'm surprised I'm not a size 8 or less!!!

This sounds really bad & I dont mean it too.....but I am soooo relieved to hear someone else with this!! I think people around me have started to think I have an eating disorder!!

Hope you are ok & I too shall take a look at your links Mary, ta, Sue. xx


Thank goodness I have heard from someone with this, as my hubby says why don't I have a proper meal as sometimes in the week I do like a plain meal ie. cereals - porridge, muesli etc and then he thinks I am being funny about not cooking, but unfortunately like you I prefer to have cereal. I do like to cook for my daughter, but if she has anything at college then she will have a snack at tea time, but hubby likes his dinner etc. Today I brought some Aloe Vera drink to see if this helps as read it is good for IBS symptoms, but quite truthfully I do not think it is IBS now.

Good to hear from you


I know what you mean!! I am so relieved ( sorry!) to hear someone else with this problem.

I try to have my bio yoghurt too that I make myself ( you can buy the kit from some health shops. sometimes it helps, also I find ice cream ok & I'll make smoothies with various fruit, that too is usually ok plus I'm getting the vitamins.

I made my hubby & 2 lads ( 18 & 23 ) meals almost every day & even now they will ask me why I'm not eating with them!! I's because I've put laxatives in it!!! :)

Sometimes I will have small portions & risk it...sometimes I'm ok others not :(

Sometimes I can even eat a 'full' meal....but then feel so bloated as I'm not used to it.

They were wondering if its IBS but I am not sure either as I'm fine with what I've mentioned.

All the best to you & if you want to chat further just PM me & I'll give you phone no. if you like.

Sue x


This is one of my main symptoms I had a blood clot to my bowel and have since discovered I clotted off one blood supply to the bowel. Apparently we have three and I only have two. I also have gastroparesis and I am under a dietician following a FODMAP diet however this is more for IB and IBS but im trying anyhow.



Sorry to hear this, but what is the medication for this? Also what is FODMAP

As soon as I drink or eat my tummy goes all crampy - I keep telling myself I have to conquer this and so will probably add this to my new year plans. Presently having to go to the Haem Ward every other day for INR test even weekends and its driving me mad!!!! Also being weekends, find the nursing staff tend to only do limited things i.e. blood tests - whereas in week there are the same nurses that work on the ward that also work on the day case unit that take blood, so at weekends having to hang around.

Take care


My young son had this, at the same time as his 15 month migraine, after every meal he was in agony, curled up in a ball, and nearly fainting as he tried to digest his food... the GP sent us to the hospital, and a particularly overbearing medic who had previously written a false report, when we had complained about being struck off for scarlet fever, then proceeded to frighten my 10 year old son, by saying that his mother was really wrong to bring him to hospital, (only acting on surgery's advice, half and hour earlier), and stood at the foot of his bed shouting at us. We were very careful to explain to our son, that most people were not like this. This has passed now and calmed down with the headache. Mary F x


This is a documented symptom of Hughes.

I had a lot of problems before I went on Clexane. It is not 100% now but is very much improved.

Are you on any medication for your Hughes?

I think you should definately mention at your next ST appointment.

Probiotics can really help this condition. You can buy capsules (Healthspan is good) or eat Probiotic Yoghurt, both together is good.






Sue, I think my med (US equivalent to celaxane) is causing some of my symptoms. Had them before but now much worse. I posted a question a little bit ago wondering about the meds....

They said a year ago ulcerative colitis but unsure what's causing it. Whatever, its been so much worse lately I don't dare eat as everything goes through me so fast with no warnings!


Funny this thread should pop up now. Only this morning I was reading about Celiac Disease. As you all probably know it is linked with Hughes, Sjogrens, Lupus, Fibro, Hashimotos etc etc.

Like you all I get IBS and was one of the first symptoms that I started getting years ago. I know now not to eat certain foods especially white bread and things like that.

Friday we ran out of some stuff and I had some levin bread which normally does not affect me. Saturday I started getting headaches and pressure in my head, worse yesterday, today I have icey blood, fatigued with stomach problems. I may not have a full blown gluten problem but it certainly seems to me that it has sparked a flare and it makes me wonder if those of us with more than one of these autoimmune conditions have a sensitivity to things like gluten or even a weak autoimmunity to it that allows us to have it in moderation.

If you look at the symptoms of Celiac Disease you could be almost describing any of the other autoimmune conditions we have bar one or two specific issues, so I may ask next hospital appt to get a blood test for it. In the mean time perhaps you could do your own little diet tests by cutting out gluten and see if you feel better or symptoms subside. Just a thought.


My stomach gets so extended that if I try to eat a good meal I have to get in bed, take alka seltzer and use a heating pad to bring down. But sometimes a good meal like Thanksgiving or Christmas is worth it.


Hello everyone

I have to agree with all of you and ask are any of you affected by eggs? I have noticed over the past 18 months first if I ate an egg I was instantly full, then about 6 months ago it was just the white and I was full so I just ate the yolk but 2 months ago after 1 or 2 mouthfulls I feel nauseous and then in 10 mins the stomach pains are unreal.

Also along with the IBS symptoms and cramps which I have had on and off for 25 years I have developed the most atrocious acid reflux every night for past month even though I never lie down (spinal problems in neck and shoulder probs) and I take omeprazole. was wondering whether this was some food intolerance or allergy or have I completely destroyed my gastric tract with medication. Anyone else having these probs?


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