Tuesday, February 17, 2009

Gastrointestinal Effects of Sjogren's Syndrome

Image found here

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. 


    Lisa Wheeler Milton said...

    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.)

    Wendy said...

    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.

    Julia said...

    Wendy, thank you for your very kind comment!

    Leslie said...

    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.

    jen said...

    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!

    Anonymous said...

    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!

    Anonymous said...

    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?

    Anonymous said...

    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!!!!!!!!!!

    Anonymous said...

    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...

    Anonymous said...

    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!!


    Anonymous said...

    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!

    Wilhelmina said...

    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.

    tofuttiklyne said...

    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!

    Anonymous said...

    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.

    Anonymous said...

    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..

    Anonymous said...

    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!

    Kathy said...

    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?

    Anonymous said...

    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!

    Anonymous said...

    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!

    Jayne said...

    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.

    Anonymous said...

    Try this coffee. Yup, instant. Use milk to cut any acid.

    KAVA acid neutralized

    NEW BOOK!!!!!
    Expensive but empowering.

    Sjogren's Syndrome: Diagnosis and Therapeutics

    Vicky said...

    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.

    Anonymous said...

    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.

    Anonymous said...

    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.

    Anonymous said...

    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.

    Anonymous said...

    "Sjogies"....not "Sjoggies" ...Sjogren's. Has the "long O" sound....double G suggests "short O" sound....

    Anonymous said...

    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).

    Anonymous said...

    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.

    Melina Miller said...
    This comment has been removed by the author.
    Anonymous said...


    Heda said...

    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!

    Ann Boehmer said...

    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

    Anonymous said...

    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.

    Anonymous said...

    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!

    Anonymous said...

    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!

    Anonymous said...

    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!

    Anonymous said...

    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.

    Anonymous said...

    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.

    Bubble Girl:Living with Multiple Food Allergies said...

    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.


    Anonymous said...

    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

    kate said...

    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.

    Pradeep Jain said...
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    Mahesh MSA said...
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    Faith F said...

    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

    Anonymous said...

    Thank you for that very uplifting outlook. You made my day.

    Anonymous said...

    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!!

    Anonymous said...

    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

    Anonymous said...

    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.

    Anonymous said...

    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.

    Jan Veling said...

    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.

    Anonymous said...

    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.

    Caroline B said...

    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!!

    Anonymous said...

    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.

    Anonymous said...

    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!

    Anonymous said...

    Have you tried Aloe Vera juice for the constipation? I also had to avoid red meat

    Anonymous said...

    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.

    Anonymous said...

    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.

    Anonymous said...

    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

    Valerie said...

    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???

    Anonymous said...

    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.

    wetcat said...

    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

    Anonymous said...

    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!