at first I noticed there were foods I can not eat like most of us here due to dryness or spices first it was bread and cookies and as time went on there was more and more foods I was finding I can't eat or don't enjoy because of sjs for about two or so weeks it was something new everyday steaks most red meats now chicken breast the list goes on and on.
Now I can feel hungry and my partner is a wonderful cook and has been trying harder to cook things with my sjs in mind. but I sit down at the table with the yummy food I start to eat and a mouth full or two my tummy says hey girl your full :o Ive seen baby's or small children eat more then I can. so I try and take a rest but I still just as full or over full feeling for the rest of the night. I just don't understand it. anybody else finding this. I know there was another post about similar to this but I don't have the pit feeling or the burbing no more then normal for me. but the small amount of food my tummy just says no more ???
Hi Gerty
This sounds really miserable - I'm so sorry you're having such a hard time. It's probably a classic reaction to having less saliva, and every part of your digestive tract being drier than normal. That makes food taste different/odd and makes swallowing more difficult; the work of digestion is more complicated and therefore slower. All in all it makes eating a slow and tiring business.
You say that it's hard to eat supper and that you end up feeling full or over full for the rest of the night. Is it the same whatever time you eat? Maybe you could try eating more earlier in the day? I find I can eat around 4 p.m. better than any time earlier or later. It's just a pity that there isn't an 'official' mealtime around then, apart from an old fashioned English afternoon tea!
Meat is known to be difficult to digest so maybe you could try fish or dairy for a while? It's important to get enough protein but you can get it through soups if fibrous meat is tough on your digestion. There are also some good (flavour free) protein powders to sprinkle on food to keep your levels up.
Have you tried alternatiing sips of water/juice with mouthfuls of food? I find that eating soup with some bread or cheese works well if I alternate the mouthfuls. It also slows me down too which is a good thing: you have time to make a little more saliva, and also to chew your food well so that your stomach has an easier job processing the food.
Hope things get easier for you soon.
Take care - Chickpea
Hmmmm Gerty, it kind of sounds to me this may be the start of gastroparesis. I have severe gastroparesis along with other complications with my severe primary Sjs. I hardly eat but also feel full most of the time. It does keep me very slender though. If this continues, pls see your doctor and get it checked out. If that's what it is, a medication like Domperidone will help push the food thru the upper GI tract.
Hugs,
Daisy
Gerty, Take this to your doctor.
It needs to be Dx'd.
@ chickpea what your saying makes a whole lot of sense to me. I also always have little sips of drink at the table It don't seem to matter what time I eat here we believe your hungry eat is the right meal time. But yes it happens with lunch as well lunch use to be my fav time to eat but now I can only have a little bit it just don't seem to matter at all. I can afford to lose weight but I don't want to lose weight due to sickness or illness I just seem to stay very full or feeling over full for way to long I don't eat snacks in the day and by meal times I am very hungry and looking forward to a wonderful meal that my wonderful partner has taken so long to perpare for me.
@ Daisy thank you so much for this suggestion of gastroparesis I had never heard of it so I asked Mr Google LoL he told me about it I'm sorry you have this but the only symptom I have is only eatting small amount of food.
@ Joe Yes I will have to see the Dr if it don't stop soon its not normal. I am hoping its just a now thing maybe change of season we have just started our spring here but its never happend before I am also making excuses for myself as well I guess just trying to figure it out I don't want another DX this year or any other year for that matter but it maybe something simple as well.
Glad you mentioned it. Same thing happens to me. Now I know there is a name for it. Gotta' look into this more. Thanks.
Sorry that you're dealing with this. I have a similar problem: not appetite at all, I never feel hungry, I have to almost force myself to eat even small amounts, the foods I used to love (chocolate, sweets, bread & butter) don't tempt me anymore. I've lost 40 pounds since March (I was fat, so it looks good. But unintentional weight loss is scary). I've tried to think it thru without any clear answers. They could be right that it's a reaction to the dryness. I've even wondered if it could be caused by depression or even a type of eating disorder (a phobia of choking). I hope you come up with an answer and feel better soon.*hug*
Deb
@ DEB
Wow, 40 pounds since March! without trying? Your doctor is aware of this right? I know you said you had the weight to lose but that sure is alot.
How are all your other meds going? Not too many side effects I hope.
I've always wondered if I have mild gastroparesis, can someone tell me what the test is to diagnose it?
I eat small meals anyways but when I go out with my DH and I used to eat a "regular" size meal I would lay in extrememe discomfort all night long just basically feeling full and bloated in a really uncomfortable way. Since my husband and I went relatively low carb and very low sugar last January its not as bad but maybe thats because generally when I go out for dinner I'm just eating the fish or the steak, a little soup or salad and no bread or potatoes so I'm not as full. I don't know what the "diet" is but somehow removing the combination of those items in larger meals seems to help.
Gerty,
I have the same problem. Things I used to love taste like ashes sometimes. I have lost 50 pounds but it has taken me over a year so my doctor isn't concerned. I was fat too so it is nice being able to wear things that were too small for me.
I have noticed that I eat more vegetables, fruit, yogurt, cottage cheese, rice etc. But I also have a smaller appetite. There are days that I don't even want to eat.
Jules
We just finished dinner and every bite felt like it was going to be my last,, hard to go down,, and just lays there,, ya its IBS,,, and i;m a millionare
sounds like it really could just have something to do with sjs and saliva not having enough I guess if you think about if one bit is not doing its job then the other parts of the works decide they wont do there job either. I Lost over 30 kilos and more then half of that was in about 4 mths but I did not have this prob at that time. My middle tummy as I call it was very large before the weight loss I seen Dr about it quiet some years ago now because I was worried about it he felt my tummy and said it was built up fat in that area lose weight and it will go as well.
Well guess what I did lose weight over 30 kilos it all just seemed to fall of me my face my arms my everything but not my middle tummy :'( I was Aussie size 26 now Aussie size 14 ;D I also made a post about my yo yo weight as well and even tho I can't eat much food it still is yo yo. Ill try and explain early Autumn I gained weight over 10 kilos in a couple of weeks but could not figure out where that weight was as my cloths still fit then I noticed all the weight I had gained well at least most of it was in my middle tummy its so swollen and big now I look preg in my middle tummy If I look at myself in the mirror I see this very large swollen middle tummy it bulges over my jeans and even my trackie dacks and they are loose unlike my jeans. I just can't understand why I could lose so much weight from all over except for my middle tummy no matter what I do and when I gained weight it was only in my middle tummy that got bigger now its so big I just don't know what more I can do to lose my over size middle tummy :'(
I eat a lot of small meals, chew it well, drink something with the food - seems to work for me. I f I eat a lot, I get a stomach ache- then I chew on 2 Tum tablets and drink some more water.
High protein foods are harder to digest- even if I chew it thoroughly. Eat small portions seems to be the answer for me.
Hope this helps!
Pegasus
I don't know if this is related to the Sjogren's or not but I have been nauseated every day for the last year....not to the point of throwing up but think it is related to the Ro antibody causing inflamation in the membranes in my abdomen and epigastric areas. The ro antibody can cause inflammation in the membranes around the organs. Maybe we have inflammation in the GI track. 40 lbs. without trying means that you need to be evaluated by a gastro-intestinal or GI doctor. Lesley
Just a thought - could appetite loss and weight loss be a side effect of your medication? I have been on Leflunomide since July and have noticed a big difference in terms of feeling like eating. I have lost abou 12 pounds, but no worries - there is plenty more where that came from!
Gerty - just keep an eye on the weight loss and abdominal swelling as it can be a symptom of other problems. Please get it checked with your Dr. Let us know how you get on XX Ailsa
I wonder if the full feeling is to do with constipation? I agree with other posters that you should see you G.P. I 've experienced that from time to time and have upped my water and fibre intake and tried harder with exercise. What also helped was to have breakfast as your largest meal and evening meals lighter.
Let us know how you get on. Take care.
A few years ago I'd go to a buffet and eat three full plates or more. Nowadays I often go to a restaurant, drink some of my drink, have a few bites, and be full, packing the rest in a box to take home. It isn't always like that but frequently is. An ER doc thought it might be gastroparesis related and gave me an appropriate medication but I haven't taken it because one of the side effects is depression and I'm full up on that already and don't need a box to take home.
Not sure if he's right or not. Similar issues can happen if the liver or spleen are inflamed. Spleen issues aren't all that unusual in some of the AI diseases as the spleen is a stockpile of immune cells.
I have now lost over 50 pounds since mid april - not trying. It's the change in diet. The anti-inflammatory diet that Sjogrens people should be on has caused a significant weight drop. Nothing I can do about it ... it's just the way it is.
Gastroparesis can be part and parcel of Sjs when it becomes extraglandular. It doesn't affect everyone, but I have it and very severely. It is diagnosed by your Gastroenterologist. Usually an endoscopy is ordered to start. A Gastric Emptying Scan (Xray to see how your digestive system is functioning) and a Manometry is ordered.
The symptoms of Gastroparesis can range from mild to severe and include a couple or more to all of the following:
Nausea
Vomiting
An early feeling of fullness when eating
Weight loss
Abdominal bloating
Abdominal discomfort
I also have no appetite when I am not on my gastro meds. I am on a slew of medications including Domperidone to treat gastroparesis as well I get Botox injections into my esophagus and stomach every 6 months. I hope this encourages some of you to either rule this in or rule this out, because from what you are posting, it sure sounds like some ppl may have it.
@ harrigan I'm not really on any meds except for folate for my deficiency the first time I took it I was running to the loo and still seems to send me to the loo but not so much as the first day but will look into it and I'm on permanent antihistamines that Ive taken for years Ill go find that out you might be on to something there but I will see a Dr about my swollen tummy as well as its something that Ive had for many years but has just not ago early Autumn got bigger.
@ Cactus no constipation if anything the opposite not the runs all the time but I do get the runs from time to time and that is odd for me cause if I ever in the past had this type of prob its always been the constipation rather then the runs
thanks to ever body with your advice and ideas on this matter will see Dr for sure soon.
I mentioned constipation as I was having the trots and bloated and went to my G.P. She said the stools are impacted and a waterfall of looser stuff is symptom of constipation. I guess we can be dry anywhere! Good luck.
thank you so much Cactus