I have various auto-immune conditions such as Sjogren's, Lupus, Antiphospholipid syndrome ( sticky blood ) and thyroid and parathyroid issues. I have a very swollen painful abdomen - I look a good nine months pregnant.
I have non-erosive gastritis, diverticular disease and a sliding hiatus hernia. I am wondering if many of my intestinal problems are due to Sjogrens and my immune system. I take Clopidogrel and Aspirin for my sticky blood.
Recently I ended up in hospital with breathing difficulties and to my surprise fluid on my lungs. if anyone else is suffering gastric or bowel issues I would like to know if you have found anything that helps. So far I have tried milled Flax Seed, Slippery Elm, Aloe Vera and now trying Bone Broth any other suggestions to relieve the bloating and inflammation would be appreciated as now getting desperate.
I am off to see a liver and gasto consultant today but if he is anything like last time I saw him I felt as if I were just treading water and got know where.
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Jillymo
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I had similar issues until I made major changes to my diet ie. organic where possible as close as possible to how nature provides it, gluten free, sugar free (as sugar is a major inflammatory) and started a good daily probiotic. I believe a healthy gut is critical to health. The following articles are excellent.
I actually took myself off to a health farm for a week where all was organic and natural spring water. I learnt about candida and leaky gut and at a later date were seen at the London Royal Homeopathic hospital who put me on an elimination diet of potatoes, lamb and carrots for breakfast, dinner and tea with nothing other than bottled natural spring water to drink. Apparently they were safe foods.
I was told I had allergies gluten being one of them. I take good Bio - Cultures daily and just about tried everything on the market but I am not a prepackaged burger and crisp girl and do try to eat healthy. Sadly I havn't access to a farm shop and now rely on my food delivered from a super market. I wondered if my problem was auto-immune related as I have sjogrens, lupus and Aps but consultants seem reluctant to even consider this possibility. In fact I were see in gastro yesterday where I took along papers very similar to your links - he dismissed them. I had to pressure him because after doing nothing he was saying see you in 3mnths.
I am very uncomfortable and insisted I wonted something done even if he just got me tested for Sibo it was something - after being insistent he agreed. It seem's they are reluctant to help yet they can see there is a problem and I have a long list of autoimmune diseases that should be taken into consideration. I wasn't even given any tests to see if I were absorbing or to check enzymes ect. Thanks for the links I have read similar before but the problem I have is getting a consultant to take me seriously.
Until then I walk around as if nine months pregnant which is putting added pressure on my back. More and more we are reading about the importance of a healthy gut and the link to autoimmune diseases so why are they not listening.
I am taking slippery elm to line the gut, bone broth, sauerkraut. kiefer, ect to try and help my self so hardly Mc Donalds double cheese burger and banana milk shake. What sort of things are you eating and is it helping ? At present my stomach is still very sore and I still look like a barrage balloon.
So sorry to hear of your issues, especially with doctors! Have you had any exploratory investigations done ie. gastroscopy, colonoscopy, even an abdominal X-ray or CT scan? I have just had an endoscopy plus what I call “bumcam” 😜 where you swallow a camera and your whole digestive tract is photographed and analysed. In medical terms it is called a capsule endoscopy. I was found to have 8 polyps which were removed - all fortunately benign. I also have SS, Hashimotos and seem to be slowly developing RA and osteoporosis. I have been diagnosed as a poor absorber ie. I have been found (after demanding blood tests from my doctor) to be severely deficient in vitamin d, b12 (pernicious anemia) and iron. I now get monthly b12 injections and iron infusions on as as needs basis. I take calcium and magnesium (electrolytic mix for SS dehydration) and probiotics. I grow my own veg whenever I can to avoid any contamination by pesticides and herbicides. I am determined to slow the progression of any autoimmune disease! But I prefer to try to first find root causes through nutritional means rather than to roll over and suffer the ill effects of medication. If changing my living habits and acting as my own advocate doesn’t work, at least I will have had the satisfaction of saying at least I tried before succumbing to horrible drugs. I have found it frustratingly difficult for so called “specialists” to even consider the relationship of our overly processed diets to resultant illnesses. I can only give you a heap more links to digest (pun intended) and confirm that I am so much improved since taking a disciplined approach to eating ‘natural’ food the way our grandparents did. I’ve included a link to the anti inflammatory diet recommended by the arthritis organisation, it is very close to the Auto Immune Protocol (AIP) diet. Keep up your research, be your own advocate and crash test dummy! Try to find a doctor who will listen to you ! Don’t settle for anything less than what you know will help you! Take care x
Like yourself I have various autoimmune issues together with thyroid and parathyroid - plus hiatus hernia, IBS, diverticklyitis excuse the pun. I also have chronic fatigue, osteo arthritis and fibromyalgia - yawn. Geez have I really got all of that ? It is common sense our digestive systems are sluggish and not working properly hence us lacking in nutrients. The only bowel investigations were done some years ago where they put that cement up your rear and you poop a brick after which showed my divertickly issues. Never had my poop looked at - cant say as I blame them or had the capsule you mentioned. How do they expect to get to the root of the issue unless they investigate ?
I had a gastroscopy last week which showed my sliding hiatus hernia and non erosive gastritis. I dont suffer reflux because I am careful with my diet.
I have the added bonus of sticky clotting blood which isn't helping one little bit. If we on here can see logic why oh why cant our consultants ? I am unable to grow my own veg - i'm too old and not well enough for that but try as I might to eat healthy and eat all that is supposed to help - and I have tried some weird and wonderful stuff - I still look pregnant. 😕 Bum cam will catch on soon and be on the telly - it will be called spot that bum. 😂
Oh Jillymo...it's a drag isn't it? I have Sjogrens, diverticuli and irritable bowel syndrome (as well as other autoimmine) and it's hard to decide which causes what! I'm suffering at present with some gut pain, urgent calls to the bathroom and nausea. I also feel extreme weariness. Have you heard of or tried FODMAPS? Some people have success with the diet adjustments.
On my journey to a sjogrens diagnosis I had terrible stomach problems, pain and bloating after eating, like you said I literally looked pregnant, no exaggeration. It was one of the first symptoms that I noticed that my body wasn’t behaving as normal. That and the fatigue came on at a similar time. Over the years I’ve changed my diet and took probiotics and they’ve really helped this problem. I rarely bloat now. Giving up sugar helped a load and going low carb. I’ve stepped my diet up a gear now and have literally just started the AIP diet this week in hopes that can help further. Would def recommend the probiotics I take bio kult brand and have 2 in the morning and 2 in the evening. I had to slowly build up to that dose as they are quite powerful. I also started taking coconut oil, just a tsp a day and built up. I take magnesium citrate now as well, Solgar brand, twice a day. There’s more being linked with this illness and gut health now isn’t there it’s def very interesting x
Sjogren's can be vicious and is very underestimated - the lethary is second to none. I am also taking TND Bio-Cultures plus big pot of 120 but was only taking one a day so I shall increase them. I also take the coconut but as well as that I have just started taking Bone Broth which is packed with good bacteria which I stir into my soup - mind you it is expensive. If you have a butchers near buy and can obtain some bones better to make your own. Iv'e tried sauerkraut but wasn't over keen on it but I can tolerate Kefir from Lidl which I quite enjoy. I had swapped sugar for coconut sugar but now try and give sugar a miss altogether - except my banana which I am informed is good if green.
Breakfast consists of a banana with live yogurt and milled flax seed - it's not just our gut doing this it is also our bowel. When you get the balance right it is like watching a balloon go down it was that bad I was wondering if I had Sibo. I still have soreness in my stomach but not as bad and treating it with Aloe Vera. If my bowel is in trouble I take Slippery Elm - not the best to drink but it seem's anything that tastes like 💩 is the way forward. Gut health is very important with autoimmune conditions.
Soon we will ditch the maternity dresses which really in my case do not look good on a 68 year old. Xx
I agree with most of the reply posts including FODMAP (works for some); Just a few more ideas. I am gluten-free but find I also get bloating with gluten-free bread, crackers, etc. So I have to eat them only occasionally and not for many hours before appointments, meetings, etc.
I also have problems digesting corn. And I am generally dairy-free, limit sugar and don't drink alcohol. Avoid carbs before bed.
A good probiotic that probably requires refrigeration is crucial.
I think homeopathic treatments for digestion and toxicity can also help.
You can also try ginger, licorice, potassium rich foods, watermelon, coffee, papaya, avocado, cucumbers, tummy massage (around in a circle), lying on back, bring knees up over stomach, move them around and then side-to-side gently to relax stomach muscles, lemon water to get your digestion started off in the morning, sip water all day, don't use straws, or yoga. Try a few long enough to know if they are helping. Good Luck!
hello. incase it helps anyone else or you are still looking for answers, i have had a similar experience. One doctor just told me I was fat, that really upset me. Long story short, I have never been a overweight except when I had my children. Lost the pregnancy weight for a few years and life situations of high stress began looking pregnant like you described. At one point in December last year I thought this is it I am going to die, said a few bad words into the air and desperately looked at sites with similar issues. Mostly came across elderly, which I am not. skipping to helpful stuff... After all the search trial and error. I stopped probiotics, because I was having an overgrowth issue. Cut back any yeast foods to practically zero. I loved bread but limited to very very little - and homemade gluten free seems to not puff my tummy. The biggest thing that seemed to help was SOFTfood diet, commonly used after mouth surgery or for the elderly. I only found that out after having to be on it while have four of my teeth crowned from crumbling. FODMAP diet is elimination diet of things that irritate you personally. Once you figure that out, I found a mix of Mediterranean diet mixed with soft food diet has my stomach looking 3month or less pregnant. When I say mixed diet, I take foods from Mediterranean diet and cook them in slow cooker or other methods to be softened or even juicer, then re-add the pulp with juice to incorporate in meal or drink it. Then theres jello with fruit, puddings, chia seed soaked and added to drinks. Alternative sweeteners hurt my insides so I don't do sugar free melts or anything with sorbitol or xylitol (except my tooth paste). Coconut oil put in mini ice trays chilled, popped out, put in jar in refrigerator and use one to melt and swish in mouth helps with dryness, just besure to spit in trash to not clog pipes. off topic i started having balance issues a year ago and now my legs fall asleep and falling was an issue. I got smartcrutches and those have prevented me from kissing the ground. well anyway summed up huge help was diet. softer food seemed to digest and be eliminated better, more fluid intake - but sometimes when your stomach just feels full and you can eat or drink, sip water or if i feel like im starving i sip an ensure. those problems seem to have subsided after being on soft foods for a month and a half (since july this year) now i am starting to have more energy to do more 'chores' and spend time with family more and more. there is hope. listen to your body and what its asking for and says yuck to. and may we all live a long happy life. hugs.
Thanks for all the info but at present something else has come to light.
Yes like you say I get the 9mth pregnant look and I do believe it to be down to certain foods. But recently I have been diagnosed with heart failure and this could be contributing to the swelling. I cant say I have tried chia seeds but shall give them a try. Ensure is a safe bet and seemed to suit me.
It is a case of trial and error.
I am waiting to be tested for sibo to see if that is part of my problem. It is so annoying when your judged by size, they never notice the skinny arms or legs attached to the big belly. Sorry for the short reply I am unwell at present. 😘 💐
No worries Jillymo, completely understandable. My Aunt went through this earlier this year and 'died' four times. Now she has been walking getting out more and going places like she did a few years ago. In her case I think there was a few things she needed to hear so she could let go of the heartbreak of happenings and misunderstanding of the past. Not saying this is you, but any release of hidden should of , could of, would of, this person hurt me things can reduce stress on ones heart. when you're inlove and your heart flutters isnt just a thing our stomach and heart send signals just like our brain does, i suspect theres more to the whole chi energy and soul than we give credit on a science level. Anyway, i will pray for you as I walk the garden and try to send healing love and light your way. (Sorry if offends you, I dont mean it to.) warm thoughts xoxo
My issues turned out to be congestive heart failure - unknown to me at the time of posting due to an error which occurred in hospital. Its a long story which I am battling out with Pals.
I went in to A&E with heart failure and a suspected clot which I feel caused the congestion. I mentioned I had a gastroscopy due so the Dr put it on my records in case it needed to be canceled. Somebody when they transferred me to the ward miss-read the notes and thought I had been admitted with acute gastritis ! I called my records and it was written in the diagnosis.
No you dont offend me, prayers and warmth - sent your way. 😘🙏 The torch is to light the way. 🔦 Xx
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Sjogrens treatment 
Does this sound like Sjorgens? I do NOT have dry eyes nor a dry mouth. Is that common? 
Should I fight to have this taken seriously?