Does anyone experience stomach bloati... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Does anyone experience stomach bloating/distension. I look 5 months pregnant! What can I take for this

Linmur1957 profile image
18 Replies

Am waiting for 2nd blood test at end of this month to confirm diagnosis.

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Linmur1957 profile image
Linmur1957
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18 Replies
MaryF profile image
MaryFAdministrator

Hi you do not have to be fully diagnosed as a Coeliac to have a problem with gluten. I had this until I totally gave up gluten: bmj.com/content/345/bmj.e7982 It is very common with autoimmune disease and Hughes Syndrome to have irritation with this. MaryF x

Linmur1957 profile image
Linmur1957 in reply toMaryF

Thank you for your reply. Will go to web site you recommend.

MaryF profile image
MaryFAdministrator in reply toLinmur1957

It is a bit of a faff and results are not instant but worth a few weeks to try it out. I find it easy, once I worked out where the hidden gluten was, as well as the more obvious. Many of us already are doing this. Professor Hughes is very clued up on this with his patients. It has certainly with myself taken a layer of irritation out of the equation, I shall never go back on it! MaryF x

tassie profile image
tassie

I agree that investigating gluten intolerance is a sensible path, but as said if you want an official diagnosis get tested first before excluding it. I gave it up and had a marked improvement and will never go back on it not even to get an official diagnosis. Unfortunately the coeliac society (at least here) won't offer any support unless you have been officially diagnosed.

I have also found IBS support helpful ...its a probiotic especially for those with IBS

Linmur1957 profile image
Linmur1957 in reply totassie

Waiting on celiac results. Take probiotics twice daily. Stomach is so bloated and tender to touch.

MaryF profile image
MaryFAdministrator in reply totassie

At least these sort of sensible papers are now floating about in medical journals! bmj.com/content/345/bmj.e79...

MaryF x

joyB profile image
joyB

Started with Sjorgens, then. Hashimotos then Hughes and now gluten intolerance ( but not diagnosed as celiac disease). Cutting out the gluten has made a huge difference. Lots more energy . Feeling "normal" and getting the most out of everyday. Only down side is that shop bought gluten-free foods are high in sugar.

Manofmendip profile image
Manofmendip

Hi Linmur.

I have this on occasions and my enterologist says that it is IBS aggravated by APS.

Best wishes.

Dave

Stella profile image
Stella in reply toManofmendip

I have not gone gluten-free, but by being very careful as to what I eat (i.e. hardly ever eating bread, pastry, etc) I can control it. I also take omeprazole and double up on the dosage if I am eating out and choosing an appropriate menu. If it is really bad. I find by cutting out all gluten type foods for a day or two gets me back on track and then I can eat what I want, within reason. Also, Gaviscon can be very helpful to settle things, but mostly control by diet seems most effective.I have been offered an endoscopy, but declined as I think it would result in a flare up of my APS symptoms. Stella

Linmur1957 profile image
Linmur1957 in reply toStella

Hi Stella, thinking of going on gluten free diet or seriously cutting out all bread pastries etc. thanks for your reply

MaryF profile image
MaryFAdministrator in reply toLinmur1957

Most people with autoimmune do better off the gluten... watch out for it hiding in stock cubes, soy sauce etc etc, even in chocolate powder.. anything that says barley extract etc. I have really go the hang of it now, and do not miss it at all and the mild IBS I had with it! MaryF x

Linmur1957 profile image
Linmur1957 in reply toManofmendip

Thanks for your reply Dave. Doc gave me colofac for my IBS but has now changed them to omazaporole. Stomach really bloated. I honestly look pregnant and at 56 years old dread someone asking if that is the case. Waiting on celiac results, but am seriously considering gluten free diet.

Manofmendip profile image
Manofmendip in reply toLinmur1957

Hi

I was on Omeprazole and I decided to stop taking it. I had a rebound for a few days, where my stomach was burning as the acid production returned to normal but now I actually feel much better and have less bloating than when I was on it.

I also take Gaviscon Advance, which is only available from a pharmacy, I get it on prescription, as I have acid reflux at night, which is not good for my singing voice.

Good luck.

Dave

GinaD profile image
GinaD

I went on a gluten free diet by accident. (A friend nagged me into trying the Atkins Diet.) The effect on my gut and energy levels was immediate and dramatic. Subsequent (3months later) blood tests showed all my rheumatoid factors fell but, I still tested negative for Celiac. So, I too have not earned the official diagnosis. But every doctor who has seen those blood tests tells me to continue to avoid gluten!

Linmur1957 profile image
Linmur1957 in reply toGinaD

I was on the Atkins diet a year ago for a few months, lost 2 stone and felt great. But slipped back into bread buns pastries and am now in agony with my stomach. It is so bloated and sore. Should get the results for celiac at end of week but even if negative going to go back on Atkins as from today. No more bread, sausage rolls, sandwiches. I did it before and can do again. Thanks for replying. Linda

GinaD profile image
GinaD in reply toLinmur1957

I have noted myself, and seen it posted online, that once someone who is Celiac or gluten sensitive goes GF --- if they then intentionally or inadvertently consume gluten the reaction is immediate and intense. So if you were GF in the past, while on the Atkins Diet, that might explain why you are so sore now. For me, its as if my small intestine were jumping up and down, eyes closed, fists clenched, yelling" I put up with this crap for years! And I'm not going to take it anymore! Got it brain? NOT ONE MORE BITE!"

Linmur1957 profile image
Linmur1957

Had blood tests done, thyroid is borderline. Waiting on results for celiac. Get 2nd test done end of month for APS. Stomach is so bloated and sore to touch. Thought constipation was to blame. Doctor has given me omazaporole and told me to stop the colofac for my IBS.

Linmur1957 profile image
Linmur1957

Thank you will tune in. Linda

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