Too often, uninformed health care providers assume that Sjogren's Syndrome is simply a disease that affects tears and saliva production, period. When reading the message boards for Sjogren's Syndrome or other autoimmune diseases, time and time again I read comments similar to this:"I was told that Sjogren's will make my eyes dry, and my mouth dry. If that's all it is, why do I feel so tired? And achey and sore? Why can't I think straight on some days, and why does sunshine make me feel so awful? Why can't I eat some of the foods that I used to, and why do I get so much heartburn these days? What's happening to my body?"
There is no question that Sjogren's Syndrome can be a systemic condition, which means that this disease can affect the entire body, not simply the eyes and saliva glands. You can read more about the systemic effects of Sjogren's here and here and here.
This post focuses on the effects that Sjogren's can have on the digestive system. Most Sjoggies can attest to the changes that occur in our intestinal tract after the onset of Sjogren's. When researching the link between Sjogren's and digestive tract effects, I found very little literature out there to explain this apparent relationship.
When discussing this with my rheumatologist, Dr. S. acknowledged that often her patients have complaints regarding their digestive tract. They may have symptoms similar to irritable bowl syndrome and intolerance to various foods. Some experience frequent heartburn, and others constipation. If the symptoms are significant, a referral is made to a gastroenterologist to rule out other conditions.
In my case, I developed an intolerance to wheat products. So, to rule out another autoimmune disease; celiac disease, and other GI conditions, I dutifully reported to my GI appointment. I won't go into detail, but every part of my intestine was scoped and examined and viewed and probed. This was not an exceptionally pleasant examination, but the information gained from it was valuable.
I left the GI doctor's office with a clean digestive bill of health and a diagnosis of irritable bowl syndrome, which basically means that my innards are cranky but otherwise normal. I was relieved that I didn't have celiac disease , this definition from the National Institutes of Health: When people with celiac disease eat foods or use products containing gluten, their immune system responds by damaging or destroying villi—the tiny, fingerlike protrusions lining the small intestine. Villi normally allow nutrients from food to be absorbed through the walls of the small intestine into the bloodstream. Without healthy villi, a person becomes malnourished, no matter how much food one eats.
The question seemed to remain unanswered - so why can't I eat bread and cereal and pasta anymore without some really embarrassing results? I was perfectly capable of ingesting pastries and breads before Sjogren's. It seemed suspicious to me that the irritable bowel syndrome made it's appearance at about the same time that Sjogren's showed up.
Last week, I came across an interesting source of useful information regarding the link between the digestive tract and Sjogren's Syndrome. Written by Dr. Joop D van de Merwe, this online book titled Sjogren's Syndrome: Information for Patients and Professionals, is a very thorough discussion of all things Sjogren's. The book is twenty one lengthy chapters and is a very large file if downloaded. The terminology and explanations are geared toward health care providers, but for those with a reasonable understanding of the immune system and anatomy, it is a very informative read.
Chapter Nine - Gastrointestinal Disorders provided some useful potential explanations of the Sjogren's link to these problems. Dr. van de Merwe outlined several possible reasons for GI problems. Among them are these common problems:
Swallowing difficulties can be caused by decreased saliva production.
Constipation may also be a result of the decreased fluid in the intestinal tract when less saliva is produced. A potential link between the effect of Sjogren's and the smooth muscle that propels food waste products along the intestines is also discussed in this chapter.
Food intolerances and Irritable Bowel Syndrome: Dr. van de Merwe hypothesizes that these problems may be due to decreased mucous production in the intestinal lining. Since the mucosal lining is a protective barrier for the intestine against irritation, a decrease in mucous production, which is evident elsewhere in Sjogren's, could potentially allow this protective lining in the intestines to be less effective resulting in an irritated bowel. The National Institutes of Health offer these additional explanations and suggestions for IBS patients: IBS means your bowel doesn’t work the right way.IBS can cause cramping, bloating, gas, diarrhea, and constipation.IBS doesn’t damage the bowel or lead to other health problems.The doctor will diagnose IBS based on your symptoms. You may need to have medical tests to rule out other health problems.Stress doesn’t cause IBS, but it can make your symptoms worse.Fatty foods, milk products, chocolate, alcohol, and caffeinated and carbonated drinks can trigger symptoms.Eating foods with fiber and eating small meals throughout the day may reduce symptoms.Treatment for IBS may include medicine, stress relief, and changes in eating habits.
Frequent Heartburn and stomach upset may be caused by inflammation of the stomach lining related to the inflammatory action of Sjogren's. Another, more common cause of the problems may be related to the side effects that many of our medications produce. NSAIDS - or non steroidal anti inflammatory drugs such as Motrin, are often very irritating to the stomach and intestines. Other medications frequently used in treating Sjogren's Syndrome such as Plaquenil and Methotrexate may cause stomach upset.
Like most other Sjoggies, I have learned by trial and error which foods are problematic for me. I have grudgingly come to accept the fact that my days of turning out loaves of golden, fragrant, yummy, home made bread are a thing of the past. Sigh. Cookies, cakes and pies need to be an infrequent treat consumed in close proximity to a bathroom. Drinking a Starbucks latte requires a follow-up antacid.
It helps a great deal to have an explanation of sorts.
108 comments:
I think Sjogren's definitely wreaks havoc on the digestive system. I've had problems with swallowing food and heartburn for years; my pregnancies were misery as a vomited most all nine months, to the point of being dehydrated.
So, I went to a GI and after they stretched my esophagus out, they did a biopsy and sure enough, I had EE (eosinophilic esophagitis). My rheumy thinks it's related to SS.
(I recently started using a slippery elm powder in applesauce in the mornings. It's soothing and adds a slippery surface to the GI tract. I've been impressed.)
Julia, another tremendous post from you including your trademark wonderfully helpful synopses. Thank you!!!
The "here" links are terrific. The second one (Medifocus) is really excellent for being both very well-organized and exhaustive.
Speaking of GI effects--long before my Sjogren's diagnosis, I'd found Heather Von Vorous's IBS website, so had already figured out a couple of tricks, namely dairy-avoidance and limiting bread to French or sourdough (have you tried this?). Instead of milk I live on Rice Dream and yogurt. What a difference this made. But it wasn't until going through GI work-ups as you did to rule other conditions, and trying and abandoning several gut-upsetting anti-inflammatories, that things have finally settled down. At least for that end of the digestive tract. I've just learned all about angular cheilitis. No fun. But a shot of B-12 seems to have helped.
Thank goodness for your blog. I hope you have a "visits" counter because I'm sure your audience is huge. Continuing to enjoy all your posts whether highly informative or utterly silly. Thanks so much, keep 'em coming.
Wendy, thank you for your very kind comment!
Thank you for putting a spotlight on this. I went through the same thing. The gastro doc, the okay from the doc, and labeled ibs. It is a relief to get an all clear result. SS can do so much more than just affect the eyes and mouth.
Hi Julia,
firstly i want to tell you how grateful i am to all your hard work on this blog. i have had ss for a year and only just diagnosed and your info is excellent. i developed food intolerances and am on tablets for my acid and oesophagus that also act as anti-histamines. when i eat the wrong things i actually get hives, urticaria. unfortunately i still have failed to isolate these foods!!!! thanks soooo much!
Thank God for the internet. I knew my SS had something to do with my indigestion. I see my rheumy on Monday and I will bring this up to him. My primary had me believing it was just age and ibs.
I have more of a systemic SS (began with Pancreatitis). I've yet to meet another male with SS on a SS blog. Thank you for your insight! Does anyone have skin crawling itches when they get out of the shower??? The worst!
I wish I'd found your blog sooner!
Excellent information, and a relief to know that others are experiencing the same thing - and it's not just 'stress' as some friends & relatives keep telling me.
I learned some things by ordering a presentation from last year's Sjogren's National Patient's Conference, where there had been a speaker on "Gastro Manifestations of SS".
One is decreased gastric acid production. I started taking 'Gastracid' which I get from a Holistic MD - it made a HUGE difference.
I also take Digestive Enzymes and Bile when I eat.
I've become allergic to almost everything, and when I get a really bad reaction, I have to take Prednisone.
I've found I'm more likely to get a digestive flare-up when I'm tired (from traveling, or more exercise than usual, etc.). Has anyone else found the same thing?
Hi, i am a 30 yr old aboriginal mother of 4 when i was 26 yrs old i was told i had sjogrens for yrs i kept goin to the doctors about different stuff but never linked things together until i went to my dentist, in the past 6 yrs i have had 40 cavities 6 root canals and 4 teeth pulled out, all because of this i thought it was because my kids are too close together 8,7,4,2 with 3 miscarriges. so one day i go to the dentist because a tooth had just crumbled to bit, he comes in all calm and i and sitting there he asks what is goin on and i say ok and start to cry, he looks at me like i am crazy and asks if everything is ok at home i say yes but i wanna know what the hell is going on i have 3 brothers and one sister whom all have beautiful teeth (striaght and white) and here i am with cavited and teeth hanging on to save their life u know and he says brb... so he comes back with a paper and says ok head to toe what is wrong....so i start listing all my things and he looks at me and says i think u might have what is called sjogerns syndrom hands me the paper fixes my problems( with my tooth) and tells me to make an appt with my doc right away to get tested so i did and i do and have been tryin to deal with it ever since!!!!!!!!!!
Hi- I'm new to this site so blog (actually all blogs) and want to make sure I'm doing it right first before I post my question/comment...
OK..looks like it's working.
Hi there- I'm 39 and have had Sjorgrens for 2 years. I was also getting my throat dilated a year or so ago and they found EE. Immediately following my dilation my throat was very painful for about 3 months. I finally went on flovant for a few weeks and pain stopped. I've been fine until now. I'm 33 weeks pregnant and came down with a cold and then my throat got very painful again. It' s going on 3 weeks now, I've been on flovant again for about a week with no real improvement yet. I was thinking it was associated w/ EE so went back to GI and EE is not supposed to "hurt"..so thinking it might have to do with Sjorgrens....lack of mucus, can't heal, fragile throat lining etc. All I know is it really hurts and no one seems to know why. Need to probably go see Reumy, but reaching out to see if anyone experiences a very very very sore thoroat with SJorgrens? Can't find much on-line..
Thank you for any help you can provide!!
Julie
This really help me understand how my Sjogrens affecting my GI tract. I also have an inflammatory arthritis so I have learned that the Remicade, Imuran, and Prednisone that I take makes me have yeast overgrowth. So, I have been avoiding yeast products and sugar. I also put Green Kefir in a daily smoothie. I feel better when I can drink a really healthy smoothie, and I will be sure I add plenty of fiber to them. Thanks for your help!
Wish I had found your blog sooner. I´m from Finland and I haven´t found information about Sjogrens and gastrointestinal disorders in finnish. My mother (55 yrs) was diagnosed with Sjogrens last fall. Around christmas she started to get sick. Couldn´t eat, feeling sick, tired, etc. She has lost weight over 10 kg´s (app. 20 lbs)since then. Her intestines have been scoped and probed from all directions and she has been to diffrent x-ray and mri scans. Nothing´s wrong. It has gotten worse and now she has been in and out of hospital. Of course cause she cannot eat and she doesn´t even have an appetite. There she gets Ringer iv and medicine and get better in a day. The problem is our public healthcare system, even if it is very affordable and available for everyone. Once you get in the system they will just take tests and make the patient run around in diffrent scans. No one listens to the patient. And every doctor has a very narrow area of specialty. So there is no one who sees the whole picture. Though her rheumatologist just contacted her and said that all of this could be about the Sjogrens and he has some new info from a conference he attended recently. I started to get so frustrated with this situation that I decided to search information about this in english and that is how I ended up in your blog. My mothers english skills arent as good as mine so I will read what you have linked on your blog. She is a nurse thoug, so she will understand very well what this all is about. All of this is getting in her head and she is a bit depressed. Thank you again. This gives me a lot of hope for getting her better and happy.
I just stumbled upon this blog looking for information on heartburn and Sjogrens. I just finished my DD coffee and got the most horrendous heartburn. I popped two tums and drank tons of water trying to flush it down in the opposite direction. that solution was temporary. This has prompted me to start becoming more aware of what is triggering this. I've been having it happen for over a week now. I guess it's time to call my rheumatologist to make her aware of this new symptom, wondering if it is indeed related to SS, a side effect of meds or something else. I will continue to make lemonade out of lemons!
Hm reading all of your posts makes me realize how many things I got that is because of Sjögrens and not seperate things. Been avoiding lactose and gluten for 2 years now, before then it used to be fine but nowadays it causes extreme bloating or needing to leg it to closest restroom. ^_^; I also have to avoid stuff like apples because of allergies (anyone else here with various allergies that get's soooo much worse because of the nose not being properly lubed? dust/pollen etc can't remember when I last slept without waking up and not being able to breathe)Anyway and in last half year or so my stomach suddenly started being completely unable to process anything fizzy. Can't even be fooled by de-fizzing the beverage. Ended up waking up in the morning unable to move or straighten out because of the extreme acid attacks going on. Had no idea what was causing it until yesterday when I stumbled onto this blog, thought it was just "normal" acid reflux. >_< So my diet nowadays is mainly soups, wholegrain bread with low fat cheese squares on (since those seem to work)and once a week me and my BF have take-away day with chinese food and a cheesecake when I simply don't give a #¤%& about the consequences. (Will probably have to give that up eventually but right now it's still doable) Oh and of course I take mineral and vitamin supplements, still not got the omega acids into the mix so really need to sort that out, and need to give up the coffee completely too (only drink 1-2 cups at the most a day though), drink more decaff than regular but even that seems to cause hand pains occationally now.
I was doing some research on SS and constipation. My dad has Sjogrens and Has had all his teeth replaced. If you live in the US and have PPO or even HMO you better fight your butt off to get all your new teeth paid for under your plan. It is due to a medical condition and not cosmetic. It took my mother 4 years of battling until one day she happened to get the right person on a call with Insurance company and she says '" sure its covered." Can you imagine the that?! Be your own advocate please and YES your medical claim for teeth will get paid. Best of luck to everyone. I just had to post this since it was such an issue and would hate it for anyone to not have teeth, espcecially paying for health insur..
Just discovered this Sjog. blog today (1/30/12) and am so glad I did. I'm so sorry many 'posters' have SS problems, but at same time, feel relieved that others have same problems I do. Some years ago, I used to wonder why I had GI, urinary, respiratory problems, all at same time and continuously, and thought, 'It might be some systemic disorder', but didn't know about SS yet, was undiagnosed. Then I began suffering overwhelming fatigue, like I just wanted to drop to the ground wherever I was and block out the world. Told my GP & he sent me to cardiologist, nothing wrong there. Then GP did blood work and found + RF and ANA, referred me to rheum. who did more blood work and diagnosed SS. I was relieved that the puzzle finally had a solution. Best of luck and health (as good as can be!) to all!
I have sjogrens and very bad gastritis and GERD. My errosive esophagitis is better butI lost 30 pounds and can barley eat from the gastritis. I'm on Dexilant twice daily, it's a proton pump inhibitor and Reglan as needed. I take asidophilis and digestive enzymes too. I don't get enough calories because I have abdominal pain and nausea all the time. The doctors say its from the sjogrens and stress makes the gastritis worse too. Any ideas?
I a glad I found your blog - it is the first ray of light I have found since I started with this whole thing.
I have Sjogren's as well. It was actually just before I had lap band surgery that I was diagnosed 4 years ago. Until this past year I have lived fairly symptom free. Now I have food issues and not being able to keep some foods down. Protein is a major factor - some of it I can eat some I cant. I eat small pieces, chew well. I have noticed if I am stressed my chances of keeping anything down are slim.
Does anyone else have an issue with proteins?
Thank you so much for listening and this blog!
Thanks so much for posting about this Julia. I am happy to come across your blog. I am in the process of determining if I have Sjogren's (I have already had some positive test results) and I also have battled with GI issues for years.
Thanks for sharing and I look forward to reading more!
MD
I've been struggling with 'IBS' for years and no doctor had an answer. It was only when I started trying to get my sinus problems sorted out that I noticed the same things that bugged my sinuses bugged my gut and vice versa.
Got a Sjogrens diagnosis and now I take split doses of guaifenisin with every meal to keep mucus membranes lubricated.
Even so I have to avoid all grains and dairy, eat lots of squishy foods and soups. Meat in servings of 1-2 ounces per time.
Does everybody benefit from Prednisone? I've had it before for other conditions and always felt better instantly, but my doctor doens't want to give it to me again because my liver enzymes are abnormal. But I'm almost ready to try it if I can repair some of the damage to my intestines and sinuses from years of mis-diagnosis.
Try this coffee. Yup, instant. Use milk to cut any acid.
KAVA acid neutralized
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Sjogren's Syndrome: Diagnosis and Therapeutics
Ahhhhh.....I can relate to Sjogrens being a stinker! I now get to add chronic acute pancreatitis to my list. Thankful it goes away for weeks at a time....sometimes months before it bothers me again.
I was very interested in your comments, I can confirm, dry mouth, dry eyes that become quite painful and now apply eyedrops during the night without even waking up, I am also allergic to drops that have preservatives in them. I have also been prodded and tested for all sorts of disorders including a positive celiacs, except it wasn't - the latest was an abnormal pap smear, which I refused to accept as anything other than what I call another red-herring thrown up by old sjorgren. Internal ultrasounds confirmed I was right. I have lumps and bumps growing here and there which they send me for biopsys, but they never amount to anything, just old sjorgren. I could become very sceptical and refuse to check out different things I get wrong with me, but that would be foolish, so like all you other saints out there, I indulge the doctors, have the tests, and then we both say...it must be sjorgrens. I have found Jesus Christ is my only Saviour, and I mean that literally, sometimes the pain is so bad I would not get out of bed, but He helps me and I just keep keeping on, and by the end of the day, with a few sleeps in between, I find myself amazed at what He has enabled me to do. At the moment there is not a spot on me or a bone that you can touch without it hurting, pain relief keeps me going as well, but so far I have been able to refuse the heavy stuff. Just think what heaven is going to be like and make sure that you have the necessary requirements to get there.
Does it occur to anyone that the issue may be the other way around? There is some newer research indicating that digestive issues may actually produce the autoimmune symptoms. I can tell you that I actually have tear film since I have gone gluten free, and no, I did not test positive for celiac.
I have SS and RA, and often have to decide which is wreaking the current havoc. I agree that SS causes so much more than just dry eyes and mouth. In fact, those issues aren't so bad for me. However, when diagnosed in 2007, and since, I have had increasing problems with heartburn (why I'm here today), hives, joint pain, allergies, poor sleep, itchy skin (before, during and after showers), fatigue, broken blood vessels, crumbling teeth...I'll just stop here. Thank you, Julia, for giving us a place to confirm that we are not losing our minds.
"Sjogies"....not "Sjoggies" ...Sjogren's. Has the "long O" sound....double G suggests "short O" sound....
What about autonomic dysfunction as a reason for GI problems with Sjogren's.
AD is often found in SS sufferers - peripheral neuropathy and Postural Orthostatic Tachycardia Syndrome (POTS).
I'm a 45 yr old male who originally got diagnosed with SS because I developed Collagenous Colitis (or microscopic colitis). Both are rare for males, but there is definitely a correlation between SS and GI issues.
Pat
Thank YOU FOR THE INFO, ON YOUR BLOG,i ALSO HAVE SJOGRENS SYNDROME.
Putting my fingers in my ears (figuratively) because I have primary Sjögren's syndrome and have also been diagnosed as having coeliac disease. Have to admit that gluten is not the only food that sets my gut dancing. Food for thought that at least won't irritate my gut!
My name is Ann Boehmer, amboehmer@aol.com. I do not have Sjorgen's, but my salivary glands were fried by radiation treatment for recurring cancer in my neck. I now find myself with gas, bloating, embarrassing flatulence, fluttery innards, etc. I never had this before radiation treatment. On reading about saliva, I find that it contains digestive enzymes for protein, fats and particularly carbohydrates. Salivary amylase normally accomplishes about 30% of carbohydrate digestion. So those of us without saliva, like me and like you folks, are not going to hand over our food, particularly carbohydrates, to our stomachs in the condition it was meant to be. I intend to start a carbohydrate-free diet tomorrow and for the next few days and see what happens. I have found no doctor who can give me more than a nod and a blank look about this amylase idea of mine. But if this our mutual problem, all you Sjorgenites, we may be able to deal with it, knowing its cause, or partial cause. I'll be looking to see if any of you have any ideas on this. Please email me if you like.
Ann Boehmer
I have had some success with low carb diets helping my GI problems. I have also had reasonble help with Aloe Vera for constipation. But really and I haven't seen anyone else post about this but has anyone else tried Lugols 2% Iodine? At first it burned my stomach a little but after a few days my stomach felt a little better. After a few weeks I knew it was working and now I feel like the majority of my acid relux is gone. I only take one or two drops twice a day. I was taking five drops twice a day but got flu-like symptoms. "Detox" is what some call it. IT's only been about six weeks but it's the easiest, cheapest and BEST relief I've had in decades for my acid reflux. I'll come back if this doesn't continue to work for me.
My Dry Mouth does NOT allow me to Sleep---HELP! I am so exhausted. I wake continuously thru the nite---due to dry mouth. I wake and feel my mouth and throat so dry it hurts. I desperately sip water and spurt Oral Balance in my mouth. I struggle to fall asleep again. Then the cycle repeats itself. Eventually I wake in the morning with a dry sore throat. And I am thoroughly EXHAUSTED...I have a humidifier going full blast. PLEASE tell me what I can do to keep my mouth and throat moist enough to sleep thru the nite??? A Sleep Doctor said I have developed Sleep Apnea and suggested a CPAP Machine. Are you kidding??? That CPAP Machine drys out NORMAL people's mouths and throats. There is NO WAY I can use a CPAP Machine. But that is not really the problem for my lack of sleeping well--as we all know on this site--it is MY Sjogren's Dry Mouth---that does not allow me to sleep well. So PLEASE tell me YOUR SECRECTS to SLEEPING well with Sjogrens?? The Sleep Doctor has NO ideas other than the humidifier which I already have. This is a SERIOUS issue as I NEVER have a good sleep. I always wake EXHAUSTED. How can I do to prevent waking with dry mouth and sore throat in the middle of the nite? Hope to hear from you SOON. I just lost my job because my Sjogrens is getting worse and is not letting me sleep. Also, I am having bad GERD. I see that that is common in Sjogrens too. Sheesh, this illness is actually causing me more problems than my RA. I forget I have RA since taking Enbrel. But my Rheumatologist will NOT even discuss my Sjogrens as he says that there is nothing he can do about it. He says to be thankful that the Enbrel is working so well for the RA and Sjogrens is not that serious a disease. But now I am not so sure I believe that since it is the Sjogrens that is not letting me sleep and giving me bad GERD. Waiting for your kind advice!
Have you tried Xylimelts? They are little "discs" that you put in your mouth (can be used while you sleep) and they stick to your gums and help produce more saliva. Amazon sells them, as well as some drug stores. Also, try eating foods that reduce inflammation. Just search the web for anti-inflammatory foods. Fish oil and anything with omega-3s helps. I notice a difference in the level of saliva I have when I have more omega-3. If I eat fish, my mouth feels better the next day.
If your Rheumatologist will not discuss Sjogren's, I would see a new Rheumatologist! Good luck!
Just found this. I have Sjogren's. I was diagnosed 2 years ago after having about 5 years of bizarre symptoms, I saw an ENT doctor for a chronic sore throat, who then referred me to another doctor, who scoped me and told me it was GERD. I also developed Raynauds, had a problem with constant 'sighing' & yawning, and had weird pain on & off and was exhausted all the time. It finally took my dentist to realize I have Sjogrens when he noticed I had no saliva. I am on Salagen, which helps me get to sleep. When I wake up in the middle of the night with my dry mouth, I take another one. Not how it was prescribed, but this way helps. I also put Vaseline on my eyelids at bedtime. I have been using Ecrinal nail strengthener for my split and ridged nails. These are my tricks! My Rheumatoogist wasn't much help. But what I have noticed lately is that my symptoms don't seem as bad when I avoid dairy. Has anyone else found his. So happy I found this site. I don't know anyone else with Sjogrens, so it's nice to know I'm not alone!
Thankful to have found this website. I was diagnosed with Primary SS about 7 years ago. My stomach wreaks havoc on me, as well. Thank you all for your tips and ideas.
I have sjogrens and ra for 10 yrs. When I went into menopause that's when ss& ra went out of control attacking my heart, now have pacemaker. Rheum and cardiologist would like to see me on tons of drugs. This is what I do I take plaquinel 1 x a day 200mg,drink chlorophyll,vit b12,food enzymes,vitc,krill,cq10,vitc-3,magnesium,calcium,selenium,apple cider vinaigrette,chia seeds,protein powder. I stay away from wheat,flour,sugar&dairy. I do eat sheep & goat cheese.i drink almond milk shake every am with greens,banana, blueberry, cherry I throw some of my vit in and it really taste good. I learned over the yrs u need to watch what u eat , have.a positive attitude, be ur own avocate because the dr don't really know the extent of damage the drugs r doing to ur body. They need to combine holistic nutrietion and medical know how We should work together as a team and evert pt should be an individual with their sysmtoms and diet.Drs bunch u into the same big group of very aggressive treatment u need to supplement,watch ur diet and take meds this all works together not drug band aid effect.
I have Sjogrens and 12+life threatening food allergies. I say there needs to be more research on Sjogrens and causing food allergies. I started having food allergy problems years ago. I was diagnosed with Sjogrens this past Feburary after I lost my upper teeth ,started losing hair( still happening), & lost 25 lbs. Not to mention the dizziness, pain and extreme fatigue.Also I continue to add more and more foods I'm allergic to. I don't eat grains( anaphylactic to them), I actually eat very healthy.
I me p t saying to my husband it has to be Sjogrens causing the food allergies but the Doctors won't say it can cause food allergies.
I just keep on and live as well as I possibly can.
Christina
What a brilliant site! I have been telling the doctors for years that I thought my sjogrens (diagnosed at menopause 10 years ago) was connected with my miserable out of control gut. They don't believe me. So I have changed my diet myself - cow dairy and gluten free - and spend ages trying to produce enough saliva to help everything go down properly - all with good effects. I am also taking cider vinegar in water first thing in the morning. It is so encouraging to hear that others have the same bathroom urgency embarrassments and that they attribute it to Sjogrens - it confirms what I thought, but I was beginning to think I was all alone out here. Thankyou, everyone! Liz, UK
Firstly, I want to thank you for this blog! I've had SJ for 12 years (diagnosed via lab tests), but for years, most people knew nothing about this autoimmune disorder. I was not able to find a rheumy doctor in my surburban town, who knew much about it. Thankfully, I live near a large metropolitan area, and have finally, decided to go there for treatment. I have delayed due to other extreme health problems, breast cancer (bilateral mastectomy three years ago. Second bout with it). Fibro, Chronic Myelogenous Leukemia (taking Gleevac - pill form of chemo, at night), asthma problems, thyroid failure (synthroid is helping a lot now). All of these, with the exception of asthma, were diagnosed in a period of 10 years. It's been very rough dealing with it all. But I am now ready to address the SJ. The profuse sweating is out of control, and has been for years, but with all of the pain, and health issues, I stayed home and nobody noticed it. Now that I am on synthroid for the thyroid failure, I feel 'almost' normal, so I go out more. However, the sweating is not normal. It does not matter what temp it is outside, it can be freezing, and I sweat. It's not related to activity either. It's sticky, and smells awful, and only happens on my head and neck. I don't wear makeup, because it melts, and I carry towels in my purse when I leave the house. I cut my hair very short, but nothing helps. People stare, and I am very embarrassed. The stomach problems just began recently. I had an upper and lower GI a year ago, and got a clean bill of health. Over the past month, I noticed my stomach actually hurts when I eat. I have bouts of constipation, then the runs. It's very painful. I noticed that the pain has very little to do with what I eat. I can drink water, and it hurts. I also noticed a lot more gas. With these two problems, I don't go out much, and it's difficult for me, because I am a very social person. After finding this blog, and another discussing the profuse sweating from head and neck areas, I decided to seek a rheumatologist in the city. I am thankful that there is more know about SJ, but it's a shame that the numbers of those afflicted with this horrible condition, has increased over the past decade. When I was first diagnosed, I knew only a very few who had it, and that was because of the internet. Back then if you mentioned SJ, people never heard of it. Today, that has changed, sadly. I do think it's the glands under my (our) ears that are causing these problems. The autoimmune disorder, I believe, has disrupted or negatively, affected them. Mine swell in the winter, and I look like a chipmunk! They hurt when they swell too!!! Heat relieves some of the swelling, but not all. I've also seen an optometrist for dry eye, and had plugs put in my tear ducts every winter. Usually though, one, or both plugs fall out shortly after inserted. I pray that the medical community is researching, diligently, into better ways to treat this condition. It's limiting us not only from dealing with these issues, and more, but from having relatively normal lives. I cannot live on immodium, and o-t-c bulk additives to feel better. The stomach pain has become so bad, that it doubles me over, at times. I use a heating pad to alleviate the pain, and it helps, but I deal with it on a daily basis now. Coupled with the profuse, unexplained, and inappropriate sweating from my head and down my neck,...I am sure that I appear very odd to others. I am 61, and menopause is no longer an issue. Thanks again for your blog! I have bookmarked it, together with the one addressing the sweating issue, and will discuss them with my new rheumatologist. Sjoggies need more research, and treatment options! Hopefully, if we complain enough, doctors will begin to push for better options for us.
THANK YOU FOR YOUR WEBSITE Information is power! Has anyone tried LDN or low dose naltrexone ? I am on a very low dose 2mg and find it is good at suppressing some of the autoimmunine symptoms Look up u tube and website information. LDB has been helpful for me You will need a prescription and find a compound pharmacy It pretty affordable I hope to keep finding good information on controlling some of the symptoms
Thank you for that very uplifting outlook. You made my day.
Glad u mentionef the itchy skin after shower. I had noticed itching when I had wiped off arms with damp wash cloth. I don't recall specifically a shower at this time. I had wondered if I was allergic to water!!
I can't ever see givin up coffee.its the reason to get up and make me feel better with all these symptoms foggy head sleepiness
I have suffered from IBS since 1974 and was told by my doctor that it is a "functional disorder" and learn to live with it. In 1992 I was diagnosed with SS and other than having dry eyes and very raised ANA 1:5120, nothing else was affected until now; the IBS has returned with a vengeance. I know when the flare-up subsides, so will the IBS. I'm starting with Slippery Elm tea today. let's see what happens.
I use a cpap. It doesn't really cause me any extra dry mouth. It has a water reservoir that might actually help a bit. My symptoms of acid reflux may be part of sleep apnea or SS. Sleeping better helps.
Thanks for this blog! I have had SS since 1993 (21 years!) and for the most part have managed it well with diet and exercise. My most salient symptoms are dry and burning eyes (some days are worse than others), and days when fatigue has me in bed at 6:00pm (other days I am a bundle of enery!). I have never lost work or changed my life dramatically due to SS, but I have had myriad of symptoms over the years -early menopause, osteoporosis at a young age, recurring UTI's, lipodermatosceloris, pruitis ani, and dermatitis in my ears, to name a few. Now, of course I have no clue if any or all of this is related to SS, but I seem to get more obscure, difficult to diagnose, and nearly impossible to treat symptoms, than any of my peers. While it sounds miserable I have managed well, live and work without much interruption, and feel blessed that I don't have worse health issues. I refuse to have anyone tell me I am somatically focused or have psychological problems! I work hard on self-discovery, and self-improvement on every level! I have recently been having IBS symptoms and googled SS and IBS and found this blog. I get tired of running to doctors and specialists because for the most part they aren't helpful, they want to treat things and chronic conditions require management NOT necessarily treatment. I have found that my nutritionist and the gym are my most trusted allies! And blogs like this help me to normalize things a bit, and get ideas of how to manage my symptoms, so thank you very much. And, best wishes to everyone making there way with challenging health issues.
I think I have Sjogren's. About a year ago developed hemorrhoids. The Gastro told me to eat more fiber which I did. But constipation became worse. Went to another Gastro who did a hemorrhoid procedure which did not help at all. Then he said I had IBS. I think it's Sjogren's because I have dry eyes, nose, throat, skin, vaginal dryness and the worst is the constipation. Can't get rid of the hemorrhoids because of the constipation. I drink a lot of water, eat a lot of fiber. I've tried everything. Going to see a Rheumatologist but I wonder if she knows anything about Sjogren's. I don't have much of a life anymore because of the pain and discomfort of the hems. I've tried everything known to man to get rid of them and nothing helps. OTC meds and prescription meds - nothing helps.
I had no idea that I had sjogrens until my chronic stomach aches of 30 years were investigated by numerous specialsists and I ended up in London Bridge Autoimmune centre seeing Dr Hughes, a sjogrens specialist. His diagnosis of Sjorens with attendant coeliac disease has been life-changing. He commented that several people test negative but are in fact coeliac and certainly in my case, having tested negative for 25 years it is the case. I cannot eat any gluten at all without a full crisis which includes stomach ache, pathalogical exhaustion and swelling of all my joints. Lactose is tricky as well. You cannot just have a little gluten and soy sauce is the one that catches me out more than anything else!! This syndrome is so bizarre and blog is fantastic - thank you Julia. It's very useful to be able to cross reference symptoms!!
Have you tried a humidifier? Cool not hot mist. Also, whenever you drink anything except water, I was told to use a straw so my saliva production isn't affected. I also take Pilocarpine for dry mouth which helps, but it has side effects like sweating, more urinating trips, etc.
I also use spray and honey, which is really helpful. Honey candy by the bed for first thing in the am before I speak at all!
Have you tried Aloe Vera juice for the constipation? I also had to avoid red meat
Oh my gosh I hope someone is out there I love and am so greatful that I found this blog. I was diagnosed with Sle lupus sjorens lactose intolerance ect... Etc... The list goes on now I have osteopena and degenerating disk disease in my neck and back. I had open heart surgery in 2010 for a benign tumor the size of a large grape fruit that was attached to my heart. It was very rare so they cut under my breast thinking they could get it that way but noticed it had 100s of feelers coming off it like veins attaching itself to all over me so they had to sow me back up and crack my chest and bring in more doctors. Yes I'm special. :) well then sept 2nd 2014 I had to have a hysterectomy took everything but 1 ovary I'm 39. I live now in south Carolina. Doctors here in Easley and Greenville for anything but a cold are not very good except my gyno and doc who did my hysterectomy. Only good ones. I was originally from Illinois. Good doctors had all as and things under control. But they took me off my plaquinel I got bad real bad so I now have to drive to MUSC on coast in Charleston SC. They immediately put me back on meds and gave steroid shot. Due to how bad. I have scars from sores from the skin out breaks and I slept so much my life was just not worth living. I truly wanted to die. But I have one question after this terrible Long post of my life. Is any out there like me with there stomach and cannot eat raw fruits raw vegetables. Is lactose intolerant. And if I try to eat just a grape my stomach will swell up like I'm 6 months pregnant. I have pics to prove it. Doctors here say oh its stress all in my head. NO it is horribly painful and its just like a lactose attack. Thank you if you made it through my long post.
Hello all.
This is a wonderful blog site. Doctors look at SS from a clinical point of view and from my experience do not seem to relate all the offshoot health disturbances that SS causes, to their logical cause ie SS.It was my dentist who picked up that I might have SS.
I don't have any constipation problems as long as I eat natural yoghurt with some oats and albran in it. I am about to take the next step to m=change the yoghurt to sheep or goats yoghurt. I have found any sugar at all will cause almost instant gut reaction (wind, pain etc). I have even cut out most fructose which means very little fruit (can't do without bananas as they are easy and soothing to eat.)
Has anyone noticed a connection with sinus infection. I have found that those days preceding a sinus inflammation or infection are those days where I experience that debilitating and inexplicable fatigue. I now put two and two together and stay inside out of pollen and dust and use nasal wash and flixonase (beconase) to counteract the allergen influence. This seems to stave off a full-on sinus infection and more to the point of this conversation the red and infected eyes that seem to be a direct result of sinus infection.
Wow! I am so sorry for what you have to endure :( I have a feeling though that menopause is NEVER over - my head and neck sweat profusely and I am 62 ...been doing this for 8 years but I don't have SS ...Im wishing for a cure for this for all what Ive read here I work with a young disabled man and I see many similarities here with his ailments but no doc has mentioned SS This is so terribly debilitating and truly interferes with our needs...to eat ...and sleep..and be healthy...and social
Hi
I am very relieved to read these comments! Both my auto-immune specialist and doctor have been saying that my symptoms, though so much worse than 7 years ago, are SS, I have been uncertain.
8.5 years ago I had breast cancer, followed by a miraculous short and painless emergence of lymphoma. Hence I have been thing CANCER!( or am I depressed?)
I have pain on and off in my small intestine area-nausea and discomfort for most of the day. My weight has plummeted and I get periods of dizziness, weakness, exhaustion and burning eyes, as well as days with multiple aches and pains.
I have always had problems with medication-I seem to get every side effect of all meds, therefore am reluctant to take too much.
My auto immune specialist said my blood results are not alarming in any way so that worried me more, making me think it was not SS.
As my doctors are saying it is SS, I am trying diet, the website says the anti-inflammatory diet is good and I am trying it, milk products are a problem at present so I am taking non-diary inner health-motilium in desperate times!
Has anyone else more natural ideas-oh I sip dry ginger ale and simply try and survive on panadol osteo, also genteal eye drops, nose drops, mouth gel, skin oils and eye drops that have hydro-cortisone in them.
I think it can be a huge effort to keep going at times-I had to go to a school fete yesterday, meet my grandchildren there and do my job, because I teach at that school. I really thought that I would pass out from a feeling of huge weakness. However, I managed to sit down with a cup of tea and then after a rest and the realisation that I had got past, hopefully the worst for that day, I got through the rest! Mind over matter, in my case, has to be one of my treatments as I am finding it all increasingly hard!
Any suggestions???
I have to keep coming back to this blog to reassure myself. The gastric problems are so tiresome, and it's hard to keep in mind that they aren't something new and fearful, but the same old SS. My first indication that something was wrong occurred many years ago with dry eyes. Then I had multiple small stomach ulcers, extremely dry mouth, along with the dry eyes. Gastric problems were never far away, but were worse sometimes than others. The nausea that doesn't feel like you will throw up is there much of the time. Food intolerance persists. It's just something you have to learn to live with. Enjoy the better days, look forward to them during the not so good days, and learn what foods can figure the attacks. Having a diagnosis can be very helpful in keeping the anxiety down.
This article is how I learned that my IBS, gluten intolerance, and other autoimmune symptoms were all connected to the same syndrome, Sjogren's. Everyone who is diagnosed with Sjogren's should try eliminating gluten to see if their symptoms improve. I do not have celiac, but I have a sensitivity to gluten that resembles celiac disease. My hands and feet start to go numb about 3-6 hours after I eat foods with gluten and some other grains. Sometimes I also become dizzy, tired, or my vision blurs. I also can't eat brown rice or rice flour that contains brown rice, or oats. I have to take digestive enzymes when I eat other gluten-free grains. Read this: http://www.ifsmed.com/media/image/JournalofGlutenSensitivity_Sjogrens.pdf
This is a wonderful blog, thank you! And thank you everyone who has shared their vast experiences.
I'm going to be 66 in three months and have been dealing with autoimmune stuff since 1990, no definitive diagnosis, just MCTD (mixed connective tissue disease). I've had constipation since I was born, practically w/ same stuff you've all experienced: more water more bulk, blah blah blah, which made me worse. Headaches, got those mostly taken care of via Botox. Joint pain, muscle pain (it's always somewhere) fatigue. I've been taking a probiotic via rheumatologist which works well, so well I forgot to avoid wheat....& yesterday I got the digestive attack at work - horrible cramps, nausea. Came home and dug out the hycosamine, which worked after a while.
What made me search Sjogren's was something I came across while attempting to see if the digestive stuff was connected to the MCTD. As I read a Brit forum I saw where one person lost their teeth because of it and that triggered a memory.
I'm an adult adoptee. My younger brother and sister and I met in the Fall of 2008 - I am So Lucky!
In our first conversation Sis mentioned how our mother's teeth started to disintegrate. I'd never heard of such a thing - but it came back to me. So I emailed both of them- did she have dry mouth, or anything else? Yes - she kept water or ice tea by her side all the time. And she had a benign tumor remove which was by her salivary gland - which was also in the Brit forum.
OMG! I said! ;-). She had Sjogren's! I had tracked birth Mom down in 1993 (before the internet, lots of time, and foot work and sheer luck) to get a medical history, but her dry mouth didn't come up. The tumor was later and she was never diagnosed.
It's sort of weird to backtrack in time and pinpoint where problems came from. I never got to meet her, but it gave me a since of connectedness to her, for I think she rarely complained, and kept to herself. One tends to keep to one's self when in pain and incredibly fatigued.
I shared with my regular doc two weeks ago at my annual, did blood tests, ANA positive, ran a panel, but the Sjogren's wasn't positive but there were other things he didn't quite understand and said to come by for a copy before my May Rheumy appointment.
I'm pretty used to hearing the sed rate not high (so I shouldn't be hurting) and the whole celiac thing from my Gastro doc, but my regular doc said I'm probably either wheat sensitive or gluten sensitive. Slowly, slowly they are realizing there's quite an existing range between simple positive and negative results.
Right now I'm still somewhat swollen, so I'll put on my "big pants" and head out for slippery elm and other things on the list I made from this blog.
Oh, yes, my mouth is dry, and seems more so as I age - 3 crowns, lots of cavities, but it doesn't seem as bad as many I've read....except for the stomach right now.
I suspect all of you have felt the way I feel each time a flare up of some kind occurs: oh gosh, I must be dying, I must have stomach cancer, bowel cancer, just something really bad. Especially with the fatigue. I told someone it was like someone put a hole in your vein and life was slowly seeping out of you.
I took plaquenil for about 20 years, but we saw change in my left macula so quit that (and I long ago decided to half dose myself). So now it's prednisone - my friend!
Thank you to everyone who has shared!
i like your blog
My GI doc and a rheumatologist told me, in 1978, that they suspected I had SS - eyes were extremely dry. I had a lip biopsy and blood work done, but everything came out negative. Now, in 2015, I have caught up on all of the miserable symptoms (dry mouth, intestinal issues, periodic pancreatitis, etc., constipation requiring Linzess). Still, a lip biopsy done last year, along with the blood work, returned normal. According to the rheumatologist I saw a month ago, I have "sicca syndrome," which is all of the constitutional symptoms that make SS patients so sick, but without the diagnosis of Sjogren's. I produce no tears whatsoever and can't eat more than twice a day due to the pancreatitis. But the constipation is the worst of my GI problems. I'm SO grateful to have found this blog. Thanks, so very much!!
I too was dx with Primary SS/RA/Lupus... managed with plaquenil many years...until November 2014: GASTRITIS. All Gastro test:Negative/hida/ endo and blood all negative. SJOGRENS was elevated. Here it is April 2015...Still w/gastritis /comes and goes throughout day...This has caused havoc in my days...I am a positive upbeat person, however, this is wearing on me...Will see gastro w/n 2 weeks and rheumy later.
Most folks around say get the gallbladder out! HIDA TEST: 93% function. All blood test are normal.....
I had a bland diet before this hit me now I am even more bland...I do not eat out/I am now resorting to puree foods and smoothies(all home cooked as in the past)
I am glad to see this sight..
this conditions sucks
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My mother is diagnosed with Sjögrens a few months ago and recently she has serious stomach problems. This may be related to Sjögrens syndronme or the Plaquenil she has been using for two months. We will test it by removing the wheat products from her diet and hopefully this will help her pain, at least a little. Thank you very much for this resourceful site.
I think it is important to remember that the symptoms for high acid in the stomach are just the same as the symptoms for low acid. Most SS sufferers probably suffer from Low Acid from taking Plaquenil. So if you are taking Tums and not having relief that is the issue..
Eating probiotic foods, like home fermented sauerkraut, homemade soy yogurt (dairy makes IBS worse) that is full of probiotics, home fermented vegetables will help a lot with stomach pain, as will a Tablespoon of Apple Cider Vinegar in a 1/4 cup of water before a meal. Buy ACV in a glass bottle.. look for RAW ACV, it may also say on the jar "Contains the Mother" That means it is live and probiotic. Some ACV is cooked and is not probiotic.. Keep it in the fridge once you open it.. Yes it is more expensive.. worth it though.
We SS sufferers also need to eat a lot of fiber. I eat a ton of cruciferous veggies everyday plus I take a "triple magnesium" every night. It helps with sleep. It helps with muscle pain, (magnesium is a muscle relaxer) plus it helps you "go". You must buy Triple magnesium though. It has 3 kinds of magnesium in it that is the special cocktail. Magnesium also helps with the stomach. So it is all good. I order mine 400mg from Swanson's Vitamins.
Careful with Xylimelts! It is a sugar alcohol. Each tablet contains 500 mg. The directions say to place one tablet on each dide of the mouth for a total of 1000 mg. This type of sugar alcohol can cause diarrhea. I suffered during a whole month with running diarrhea. I couldn't control it and even had to wear diapers until I found out that Xylimelts were the cause. The diarrhea stopped after I stopped taking Xylimets.
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Great thread...I'm 46yr old male with bloodwork SSB 3.5 high positive SS diag 5 months ago. Been dealing with extreme gas, bloating, stomach/chest cramps and temporary blockages causes havoc lately. Heart is fine endoscope is fine. Comments in here may have just saved me from a GI surgery for the mystery transient blockages that come and go. Lot's of great tips here on diet and the biology for how SS in my words "de-lubes" the GI tract/digestive process from mouth to exit. Was held up in a hospital for a couple days with the last blockage. Three GI MDs and none of them thought twice when I said I have SS and about how it may be the underlying issue. I have to lead them towards the chemistry and away from the knife. CRAZY stuff this SS is. If you are around my age in the Atlanta area with SS, would love to compare notes and just gripe about it, especially if you're a dude.. not many guys with this thing huh? e mai l davekahnusmc at yahoo dot com. Peace out.
I lived with IBS with constipation from age 19 that is about 33 years now. I had mostly constipation before that. About 5 years ago I noticed my bowels starting to really dry out. I started craving carbs and really put on the pounds. I had no appetite except for carbs. I had a bizarre bout of shingles with a primary eruption but a pink bilateral rash that didn't erupt through the skin following the usual shingle patterns but on every shingle nerve. I had miserable neuropathy and blamed it on the shingles. All along my dry mouth kept getting a little worse. Last fall I was diagnosed with fatty liver. My liver enzymes started climbing in December and in January I was told you have no choice you have to lose weight. I dropped 50 lbs out of control since. Liver enzymes have returned to normal. I now have dry eyes, dry nasal passages, dry mouth, and really really dry intestines. Last week my thyroid tested good. This week I started a new round of tests that include TB HIV and several different anti-bodies looking for Lupus/RA etc...
I called my parents today. My dad has dry mouth but blamed it on benign salivary tumors he had 10 to 15 years ago. He recently had surgery to help with achalasia. When he was young he smoked some but mostly chewed on cigars. He has never been diagnosed as Sjogren's though.
Can you believe I actually hope this is Sjogren's because the only other things I have ever seen do these things to people were advanced, malignant and ultimately fatal.
Does anyone also have any other autoimmune disease like hypothyroidism?
Can you take Xylimelts at night and then take your medication like Synthroid in the morning and would Xylimelts interfere with absorption?
I have similar symptoms to your experience recently with stomach upset had all the necessary tests done, everything was okay, even got told off by a doctor even when they don't know much that it is related to sjogrens!
Since with ss, I have frequent blood vessel inflammation a few times causing headaches as well as lymph nodes infection causing fatigue which are all down to sjogren's.
Being in my early 40s, I have been thought of going through the perimenopause with all the classic symptoms since it began in my early 30s.
My paternal grandmother was the only member of my family who had a premature menopause in her 30s but she never had an autoimmune disease whereas I have polycystic ovaries which can cause a early menopause.
I have also been diagnosed of osteoarthritis which is an indication that my oestrogen levels are getting lower and that I take regular calcium supplements now.
Even raynaud's disease was found recently when my hands became stiff, cold, itchy with peeling dry skin during the cold weather. Must have had this condition since I was a child, often get cold hands even when my whole body is warm! This condition can also be relate to ss.
In my adolescence years, I also had irritable bowel, was told to go on a high fibre diet, didn't work too well and took the risk of removing all my mercury fillings from my teeth. It seem that the poison came from the metals that I was allergic to that gave me problems in the first place.
Best to check with dentist as ss can cause dry mouth problems and opticians as they were the first ones to find out about this condition by having eye tests. I was advised to see a opthamologist and was diagnosed with sjogrens in early teens.
Having all these stuff happened in my youth has bring me empathy to anyone with similar experience. Thanks for sharing the information.
Preventing gastric acid to avoid diseases of stomach acid, or often called heartburn. penyakit gastritis
I have been having pain on my lower left side.. Maybe where my pancreas or colon is? Now I see that it is related to SS.
I am curious, anybody else notice a correlation between hormones and sjogren's syndrome?
Thank you for making me aware that people can be allergic to fruit. I suppose it's the sugar in fruit. Many people should eat raw vegetables. They help organs function properly.
I've been using goats milk soap exclusively for my dry itchy skin. Helps dramatically! Costs between $4-5 per bar but if you don't leave your soap in the water it will last.
I've been using goats milk soap exclusively for my dry itchy skin. Helps dramatically! Costs between $4-5 per bar but if you don't leave your soap in the water it will last.
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How do I get rid of acid reflux and heartburn without drugs?
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Thank you so much for your informative, easy to read and understand website and blog. I was diagnosed 6 years ago and have gone from an extremely healthy, active 50 year old to a middle age woman with days of inability to function. One of the hardest parts of this disease is the feeling of isolation. I do not personally know any other person who
has Sjogren's Syndrome. My husband is wonderfully supportive and kind but I know he has no idea what I'm telling him. Thank you for providing a place where I can read about others with Sjogren's. I pray for better health for all of us.
I am from rural Kentucky. I also rely on God to help me live with this disease. Without Him I could not bear up. Had to quit working June of 2015: which was probably one of the best decisions I have made. I have found if I only use Bausch & Lomb eye wash, I can control the irritation better. The ointments and drops made my eyes more problematic. I have the dental issues as mentioned in the other post, but never thought about the medical side of the loss of teeth. Forcing my tongue loose from the roof of my mouth is not fun at night, or pulling my lips loose from my gums during the day. I was raised to work and do a good job. It has been hard not being a tax payer. Had a hysterectomy at 23, years later gall bladder, then over 13 years ago, had to remove thyroid gland, and a parathyroid gland, from tumors that was hurtle cell and hashimoto's, 3 weeks later chronic pancreatitis and my autoimmune system has targeted my pancreas, ever since then. I will not go into detail about my pancreas, other than to say I do my best, because I am accountable to God, my family, and myself. If anyone who has this disease drinks alcohol, they are nuts. I control the diabetes with diet by God's amazing grace. My GI issues have been a problem for most of my life. Since Obomacare, I limit my trips to the doctor because our deductible is huge. When I leave this earth I want to be with God forever and I trust Him for my future. Be wary of home remedies because they can cause problems with prescription medicine. Best wishes to all who have posted.
Thank you! Your blog is full of great information (and photos/clip art). I'm going to write this in Reader's Digest form. Diagnosed with colon cancer 2009. Colorectal surgery 2010. Post surgery, bowels never returned to normal. 3 challenging years later, Enter colostomy. Chronic IBS-C IBS-D, non functioning bowels. Multiple hospitalizations. So many "cures". (No celiac, thankful). Speeding forward. 5 years + of Widespread chronic pain, dry eyes, had no clue about dry mouth until recently diagnosed with a bout of oral yeast (like trying to swallow a very large cotton ball and having it remain in your throat). Peripheral neuropathy in feet and hands. This was part of chemo, who knew it would never go away? The pain in my fingers is intensifying. Dry skin. Of course, I live in the desert. Who doesn't have dry skin, eyes, mouth? But pain? Flu like symptoms/fatigue/I went from being SO fast/multi-tasker to Soooooo slow. I experienced chemo brain during and post chemo. Normal. Why has it lasted for 5 years? What happened to my brain? Why am I so sad, sad, sad to see the return of spring and summer? Too much sun! I work in the shadows from lights burning in adjoining rooms. Small lamps with dark shades are ok. "Do not turn on the lights" - my evening plea. Then! the soapy, metallic, soapy/minty burning taste/lips. Everything except peanuts in the shell (not even my favorite food) tastes like soap/mint/metal. I discovered a blogger in Australia who wrote about this weird symptom. I heard about Sjorgren's Syndrome so many years ago. My oncologist ordered all of the appropriate tests and helped open the door to see a rheumatologist before next year. I have one autoimmune disorder but it is not connected to Sjogren's Syndrome. Thank you for this post. I'm waiting for lab work to return. I would like my lab work to confirm what I believe has been going on for sometime. If I am one of the 50% who's body doesn't confirm a diagnosis, I do hope my doctor's will treat these Sjogren's like symptoms. Finally, if this is a positive thing? and to me it is, all of my symptoms collided at one time. Yes, I feel bad, yet there is something that is beginning to make sense. Sjogren's. Thank you! Best to you. kathryn
Interesting that you put it that way... my daughter was diagnosed with Dysautonomia and "celiac"... had tried Gluten free. She has not yet been diagnosed worn Sjogrens but I'm thinking she could have it. She's only 12. :(
Please tell me, what is your reason for putting the vaseline on your eyelids? My daughter is 12 and I believe she may have undiagnosed Sjogrens. She has picked out her eye lashes and eye brows.
williams6650 is my old id... not sure how to change it. April Williams, williams7540@gmail.com
Looking for help for my daughter.
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Probiotics are beneficial bacteria that live in the digestive tract. These microorganisms are very important for our health. For a start, they kill pathogens and reduce the colonies of harmful bacteria. In addition, the probiotics play a role in digestion and the absorption of nutrients.
I have suffered dry mouth dry eyes since 2009 and in 2011 was put on plaquenil by a rheumatologist. It started with stomachache and feeling of sour taste, dry mouth then I was diagnosed with GERD. Never had that before and then suddenly all hell broke loose. Bad breath due to acid reflux, burning tongue. Saw different doctors, from ENT to Gastro, to Rheumatologist. They put me on proton inhibitors to stop the reflux and I was on and off it for 2 years. Had burning tongue pain in 2011...persisted for a year and then suddenly it went away. It was painful and I didnt want to talk. Imagine teaching with it. I tried DGL licourice, etc. Temporary solution. I started to exercise more often and persisted with the exercise regime did yoga, running, etc. I think the exercise helped me a lot. Later in 2014, Dr took me off plaquenil. A friend recommended milk thistle...for the first time, my tongue was a nice pink...before it was pale with white stuff. Been taking milk thistle quite regularly...sometimes I stop...but I wlll keep that as a must have, I also tried different brands of digestive enzymes...Enzymatic brand gave me a weird breath sometimes. Then I tried GNC digestive enzyme and it has helped me ever since up to now. I started taking it beginning of 2016. So milk thistle and GNC D.E.. However, I noticed 2 things, when I take milk thistle, my mouth doesn't feel dry then I take D.E., my mouth feels dry...but no breath odor from digestive issues. Weird!!
I dont have the dry eyes that I first felt when I was diagnosed as having suspected SS. Till today, the Drs couldn't ascertain that what I have is SS...
However, exercise,vitamin D, fish oil, lots of fruits and vegetables, Brown rice, milk thistle, occasional digestive enzymes have helped me. Take coffee, tea, anything sour in moderation. Sour cream, yoghurt is alright though. However, I noticed that chewing on certain meats have become tough for me...meats like frog legs, beef steak...but fish and chickens are ok. I have reduced my meat intake, processed food intake, cut down on glutinous rice, sweet stuff, too. But exercise helps tremendously
I'm not sure if anyone can still reply or receive replies? I would however love to know more about the elm powder. My stomach is always painful for me and in so many different ways. I choose not to eat quite a bit because if repercussions or I have no appetite at all. Any info would greatly be appreciated! Ty Lisa Wheeler Milton...
The pulling out of the eyelashes is probably and anxiety disorder called trichlomania. I have it too, except I pull out my hair. I am also young, got a sjogren's diagnosis at 17. I would suggest seeing a cornea specialist for her dry eyes. I am on Restasis which has helped a lot and use systane ultra tear drops. These work like magic! They stay in your eyes for longer because they are more gel like. I also sometimes use systane ointment at night. This helps, although is a bit uncomfortable at first. Most of all, please go see a opthomologist (cornea specialist if possible) and ask him/her to take a look.
consider corn rather than or in addition to gluten...would explain issues with beverages (corn syrup being issue not fizz)and Chinese takeout...
Nothing compares to the healing power of nature. Almost every health problem can be addressed in one natural way or another. Digestive issues rank among the ones that can be dealt with through the selection of herbal remedies.
I came across your blog while researching an article on Sjogren's and diet, a topic which is of personal interest to me--not only do I have Sjogren's but collagenous colitis and all it involves. A marvelous dietician took me off gluten products, even though I don't have celiac disease, and the results are remarkable. I certainly don't miss the foods I should avoid. Thank you for this information that will be of use long after I complete this article.
Amen!!!
34, recently diagnosed with sjogren's after 6+ years of debilitating stomach issues. Ibs, hiatal hernia and reflux are ever present. I also have tmj and fibromyalgia. I feel thirty years older than I am. And I wish I could find some relief. If my digestive issues aren't acting up, I'm so fatigued I don't know how I function. If my body isn't in extreme pain, my throat, nose and eyes are so dry I want to cry....but I can't. Very helpful blog and it's nice to know I'm not alone.
For those people who are lupus sufferer and maybe reading this, I find it hard that people are still ignorant when it comes to LUPUS and have no idea what the illness is all about and still flippant about it even in the medical world.
After my daughter collapsed at home she was seen by one of the Consultants in the Lupus Unit who performed more tests and confirmed that she was negative with the Anti-RO antibodies. when I was told this, as I was slowly thinking I was losing my marbles and this was all in my head.
The Doctor prescribed a course of treatment but said that it would take about 8-9 months for the drugs to start working. I felt relieved to think that there was light at the end of the tunnel but still quite daunted by her having to cope feeling the way. After 2months of taken the medication the symptoms seemed to get worse, She had fevers, cold sweats, chest pains, constantly nauseous and she was finding it difficult to breathe. Her Doctor thought that the difficulty breathing may have been caused by one of the anti-inflammatory drugs and stopped them straight away.
But Everything started to get easier from the point we came across Justin Herbal Medicine. When I first contacted Justin he told us that the drugs they'd used had aggravated the Lupus and caused it to flare more badly. The miraculous new treatment (Herbal Medicine) was for her to start the medicine sooner which was my thoughts, which of course was helpful.
His medicine is very effective, she experienced no symptoms for the past 1year. If you/your relative have same problem, do not expose yourself to more danger, use a herbal remedy that is safe and effective. Contact him directly for more info. with this address: lancejustin54@gmail.com
It is very important that you seek professional help before trying any technique and sleep pattern could have a great contribution to your overall health as well.
Hi, unfortunately I have Sjogren's. I am managing my dry mouth with vitamin B1 (300mg per day in the morning) and vitamin B6 (150mg per day spread over the day). I also take omeprazole 20mg per day for reflux.
I am trying to manage my dry eyes which are presently my worst problem with Ikervis (ciclosporin) and celluvisc eye drops.
The dry bowels I can only manage with laxatives. Every morning I lie with my knees on my chest for about 5 minutes which helps!
I try to remember to take a tablespoon of olive oil every day since a trial showed it improved heart function.
As far as my teeth are concerned, my dentist says considering my lack of saliva, by rights I should be losing my teeth but he congratulates me every 6 months on my exemplary dental hygiene! My secret is a plastic tooth pick!
I hope some of these tips help someone; I like most had to learn the hard way.
I have picked up a few tips from this site. Thank you!
I was diagnosed with secondary SS about 10 years ago. The worst for years was the fibro - constant pain everywhere. I was ready to give up on life. My youngest son suggested I try CBD oil. I had nothing to lose, so I did. My fibro pain stopped almost immediately. That was almost 2 years ago. I have come off of my SS meds - plaquenil, savella - all of it. The CBD oil gave me normal gastro for 10 months but those problems came back. I recently was diagnosed with diverticulitis and an infected colon. I took antibiotics for 3 weeks. The gastro problems continue and I have another gastro appointment in about 2 weeks. Some days I poop 8, 10 times a day and sometimes I cannot make it to a bathroom. Stress makes it worse but who wouldn't be stressed if they were always worried about not getting to the bathroom and making a terrible mess?! Despite my gastro problems, CBD oil has helped me tremendously. It has helped my osteoarthritis some as well. I just wish it had continued to alleviate my gastro issues. Best of luck everyone. I hope others will try CBD for SS issues.
I have been dealing with Sjogren's and the effects of dry eyes for about 6+ years. I did the plugs, cauterized the ducts and then finally found out about IPL-Intense Pulsed Light. My eye doctor was the one to diagnose me and then led me to a dry eye specialist that completed IPL in 4 appointments 2 weeks apart with the final one including a heated massage on my lids. I now have some oil gland secretion which is what you need for productive tears. Closing your ducts isn't helping you have productive tears---as I found out. I too use celluvisc eyedrops at night before wearing an eye mask. Prior to this I have a mask that is heated in the microwave and applied to my eyes for 6 minutes. I take Eye Promise vitamins for eye health as well as their Restore vitamins. I use Xiidra drops...Restasis didn't do anything for me. Hope this helps those of you with dry eye issues!
From a study published in 2021: "Most patients with primary Sjögren’s syndrome experience gastrointestinal problems but have no recommended treatments available due to lack of information about the underlying causes, a pilot study reports.
Future studies will be needed to identify these causes and to explore the possible relationship between these symptoms and other conditions, such as depression and fibromyalgia, researchers say.
The findings were reported in the study “Abdominal symptoms during Sjogren’s syndrome: a pilot study,” published in the journal Advances in Rheumatology."
https://sjogrenssyndromenews.com/2021/02/22/gastrointestinal-issues-common-primary-sjogrens-patients-pilot-study/
I have had SS for over 20 years with lung involvement. I just recently started having GI problems. I have been combing through the posts looking for natural remedies for upset stomach. Seems like even a simple salad makes me sick.
I cannot tolerate plant fibre anymore so basically had to give up vegetables and fruit. Even before developing Sjogren's I couldn't tolerate bread, legumes, (and any other fermentable carbohydrates). Now I definitely don't do well on dairy. If I have dairy I will take charcoal capsules with it so it doesn't affect my breathing during the night (I have a narrow airway and the dairy seems to make my airway "stickier" for the next couple of days unless I have the charcoal with it. I have stumbled across some stories of people going into remission from Sjogren's by doing an all-meat elimination diet and slowly reintroducing only a few well-tolerated plants that don't upset their gut or trigger an autoimmune flare. That has helped me feel okay about eating mainly meat. It's just the thing that sits best in my stomach. And it's fantastic for evening out blood sugar (I used to get hypoglycemia often, which can trigger anxiety in me). Another bonus about the mainly meat diet is that after a few years on it my bone density is actually increasing. I was diagnosed with osteoporosis in my early forties. The bone specialist was quite surprised at my improvement.
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