Sjogren's Syndrome

[SueC]

I was just wondering if anyone has been tested for and/or diagnosed with sjogren's syndrome. My antibodies came back indicating that I may have this but I don't have symptoms...(dry eyes and mouth).

I've read some articles that say it is related to celiac disease but I don't see much mentioned of it here.

Anyone know???

Sue

[Lesliean]

I haven't been diagnosed but noticed severe eye dryness and vaginal dryness (as well as yeast infections) went away as if by magic when I went gluten-free. I hope you get relief soon.

[pamelaD]

Hi,

Yes, one of my autoimmune issues is Sjogrens.... I have very mild mouth and eye dryness. Vaginal dryness was mostly solved by going on Synthoid for hypothyroidism several years ago.

One my worst symptoms of Celiac is mouth sores and I cannot help but think that my mild Sjogrens contributes to that.

I just heard about a thoothpaste/mouthwash called Biotene (got it at Target, of all places). I contains enzymes that promote mouth health...and states specifically that it helps dry mouth. So I am giving that a try (just started yesterday, so no results, yet).

I would definately recommend getting some eye drops to keep on hand. You have to keep your eyes moist or you might eventually develope damage of the cornea, I hear. I usually need a drop first thing in the morning.

Good Luck,

Pam

[flagbabyds]

I was tested and everything came back positive but the blood test so they said I didn't have it.

[Bonnie]

Hi Sue,

I am convinced I have it but haven't bothered to get tested. I developed very dry eyes about 3 years ago - so much so that I can't wear contact lenses anymore.

I also have a lump in my salivary gland which I can feel - developed around the same time as the dry eyes.

My nutritionist also thinks I have it, and this may be a factor in my chronic constipation - dry linings etc.

And yes, it definitely is connected to Celiac Disease.

Yvonne

[Guest PatMinn]

I was just wondering if anyone has been tested for and/or diagnosed with sjogren's syndrome. My antibodies came back indicating that I may have this but I don't have symptoms...(dry eyes and mouth).

I've read some articles that say it is related to celiac disease but I don't see much mentioned of it here.

Anyone know???

Sue

<{POST_SNAPBACK}>

I have Sjogren's and there is more to it than just dry eyes, mouth, etc. It is also a form of arthritus. Go to a optomoligist and get tested to see if you have Sjogren's for sure. They will probably put you on Restasis for the eyes (it works great). Talk to the Arthritus Foundation about Sjogren's. I have had both of my thumb joints replaced and need both of my knees done. This is definately related to Celiac Disease.

[Jnkmnky]

I believe lysine suppliments help mouth sores heal faster. I've seen it advertised for herpes mouth sores, but I have friends who swear they are fantastic for canker sores.

[nurse diesel]

Greetings,

Add me to the list of celiacs who have all the symptoms but have never been tested. I have been unable to wear contacts for over 10 years due to dryness, and can't chew or swallow meat without water in my mouth. The bone pain is a big factor, too. I plan on getting tested (sometime), but honestly, I just don't want another diagnosis right now. I'll get there.

Nurse Diesel

[AndreaB]

This was accidentaly posted by Graham I using the report button.

We live in Brisbane ,Australia.My wife,Penny has been diagnosed with Sjrogrens Syndrome and we have done everything to try to ease her pain (dry eyes...dry mouth). We have even traveled to the USA,made an appointment with an optomologist,who gave her a prescription for Restasis.She has been using it for about 7 months now,and although she "thinks" her eyes are a little bit better,they are still almost unbearable.

She cant tolerate glare or wind in her eyes and her mouth gets so dry that it is actually painful.

could this "glutin free" diet help her problem ? I've read in the forum here somewhere that the two are related,in some way.Any advice or suggestions from other sufferers would be greatly appreciated.We are at a loss to know what to do about her eyes.She says it feel like they are full of sand...all the time.

[AndreaB]

And another post by Graham I using the report button.

Hi Graham I, from Australia (re wife Penny with Sjrogrens Syndrome)

In an earlier post, I mentioned that she is on Restasis, which was prescribed by a specialist in America.

Our problem is that nobody over here seems to have even heard of it,let alone know anything about it.As it is only a relatively new drug,the possibility of long term effects is a bit of a concern.Has any reader in this forum heard of any negative feed back about this drug ?

[darlindeb25]

Nurse Diesel, this is the first time I have heard anyone else connect swallowing meat with Sjogren's. I never connected the 2. I have a terrible time sometimes with this. Not just meat though, used to be worse with bread, which I never have now--I just never heard it had anything to do with Sjogren's. Very interesting! I have been diagnosed with dry eye, but my doctor, who is also my boss, refuses to connect my dry eye to my autoimmune disease, he feels the dry eye is hormonal because of my age--WHATEVER!

[Gemini]

Nurse Diesel, this is the first time I have heard anyone else connect swallowing meat with Sjogren's. I never connected the 2. I have a terrible time sometimes with this. Not just meat though, used to be worse with bread, which I never have now--I just never heard it had anything to do with Sjogren's. Very interesting! I have been diagnosed with dry eye, but my doctor, who is also my boss, refuses to connect my dry eye to my autoimmune disease, he feels the dry eye is hormonal because of my age--WHATEVER!

I have Sjogren's and was diagnosed via blood work and symptoms. I actually figured it out and asked my PCP for testing. A few facts about Sjogren's.....I have done a lot of research on it so my information is current.

One of the biggest symptoms of it, which is recognized by the medical profession and is generally included in the questioning, is whether or not you can swallow bread or meat without liquids. If not, you probably have Sjogren's.

I will choke if I try to do that so cannot eat a meal without liquids.

It is connected to Celiac and also to Lupus. That does not mean you have Lupus either.

Restasis eyedrops work really well to help control the symptoms. Biotene mouthwash does the same for the dry mouth. However, it is an autoimmune disease and , although you will notice improvement after going gluten-free, you cannot cure the problem simply by going gluten-free. I have stated this before and some have trouble believing that but, once triggered, you'll have it for life. Drinking alcohol, coffee or anything that dehydrates will make symptoms worse. Doesn't mean you cant have them, I do, but make sure to drink plenty of water throughout the day. Chewing gum and using mints helps to keep your mouth moist. Wearing contacts should be avoided because your eye is dry and could be scratched by the contacts.

I have never heard anything about it being a type of arthritis but having Sjogren's will also mess with your blood work

if you are ever tested for Rheumatoid arthritis. That has been my experience. I do not have RH either. So some peope get both of these together.....kind of an overlap syndrome.

I have managed mine well and it has improved but I also need to have liquids with me at all time. It could be worse!

[Morrisun]

One of the biggest symptoms of it, which is recognized by the medical profession and is generally included in the questioning, is whether or not you can swallow bread or meat without liquids. If not, you probably have Sjogren's.

I will choke if I try to do that so cannot eat a meal without liquids.

That's really interesting. I can't swallow a lot of things without liquids. I was tested a few years ago and all my blood work came back negative. My eye Dr. suggested taking Omega 3 Fish Oil Supplements to help with the chronic dry eyes. I can't say for sure if it helped too much. My eyes haven't been bothering me lately. I use Restayne (sp?) eye drops or the gel when they get super bad.

[darlindeb25]

One of the biggest symptoms of it, which is recognized by the medical profession and is generally included in the questioning, is whether or not you can swallow bread or meat without liquids. If not, you probably have Sjogren's.

I will choke if I try to do that so cannot eat a meal without liquids.

Gemini--honest, I do not know where I have been, I have never read this before, if you posted it, I must have missed it, I am sorry. For years and years I have had trouble swollowing bread and meats, sometimes to the point of not being able to breathe. Like I said, the doc I work for, who also is my eye doctor, will not even admit to my dry eye being autoimmune. He has not let me try Restatis, only Refresh or Systane. Maybe I will take my insurance and go elsewhere, wouldn't that frost him???? I have never been tested for Sjogrens, even though I have suspected it. I do have Raynauds, which I think is often assoiciated with Sjogrens. Raynauds is a form of arthiritis.

I just found this:

Symptoms Associated With Sjogren's Syndrome:

According to the Sjogren's Syndrome Foundation (SSF), symptoms may include:

Dry eyes which may also feel gritty or burning

Difficulty chewing, swallowing and talking

Cracked or sore tongue

Dry, burning throat

Difference in taste or smell

Dental decay

Oral yeast infections

Joint pain

Digestive difficulties

Dry nose and skin

Swelling of glands around face

Fatigue

Open Original Shared Link

I can relate to many of these, of course, so can a celiac. Which, I understand, many times, celiac disease and sjogrens can go hand in hand too. So many of the autoimmune diseases do. I may just ask my PCP to be tested for this, just to be sure. Thank you!

[Morrisun]

If you're still having problems I would see another doc, it couldn't hurt. I don't know if it's because my labs come back normal or what, but according to my eye doc I have chronic dry eye but I couldn't get him nor my Rheumy to let me try Restasis. Good luck!

[Gemini]

Gemini--honest, I do not know where I have been, I have never read this before, if you posted it, I must have missed it, I am sorry. For years and years I have had trouble swollowing bread and meats, sometimes to the point of not being able to breathe. Like I said, the doc I work for, who also is my eye doctor, will not even admit to my dry eye being autoimmune. He has not let me try Restatis, only Refresh or Systane. Maybe I will take my insurance and go elsewhere, wouldn't that frost him???? I have never been tested for Sjogrens, even though I have suspected it. I do have Raynauds, which I think is often assoiciated with Sjogrens. Raynauds is a form of arthiritis.

Absolutely no need to apologize for anything....I just wanted to help as I know how aggravating the problem can be. I have attacked my problems head on and, since going gluten-free and using Restasis and Biotene, the symptoms are better than they were before diagnosis. I also get dental cleanings every 3 months to keep ahead of any dental problems. My teeth are in decent shape, considering the health problems I have so I would suggest that also.

The eye doctor I was going to said my eyes still look really dry but I don't care....they feel 100% better using the Restasis. I also was getting horrible eye infections when exposed to mold and humidity and I haven't had one since using the Restasis. If you can tame down the inflammation, that's half the battle.

I also have Reynaud's but that has improved a bit since going gluten-free. Funny that they are related to arthritis because the one thing I do not have at all is joint pain. My PCP wanted me to see a Rheumatologist but I am declining for now as I know what my problems are and have them all under control.

Some of the other symptoms related to Sjogren's you listed I also have. Not sure why some people test negative for Sjogren's if they also have celiac disease and symptoms of Sjogren's......maybe testing can be hit or miss due to the nature of it being autoimmune. All I can advise is that it won't hurt to try Restasis, if dry eye is really becoming a problem. Doctor's can be such control freaks!

Find someone who will listen and test you for it. In fact, celiac disease and Sjogren's are very common to develop as a pair so find a doctor who is current with their medical knowledge. Good luck and if you have any more questions, feel free to ask.

[darlindeb25]

You are very lucky to not have joint pain, I'm happy for you. My hips were very bad before going gluten free, sometimes they are ok now, sometimes they aren't. I also am dealing with neuropathy though. I have very dry skin too--you certainly have me thinking now.

My Raynauds did calm down considerably for a long time, but this winter it has come back with a vengence. It used to effect just my index fingers, now it is effecting all 10 fingers. We have had a very mild winter here on Long Island, I don't know what I would do if I were still in Michigan right now!!! My parents told me as of yesterday, they have had 60 inches of snow so far and it was 4 degrees yesterday--too cold for me. It's 21 here now, was 12 this morning, that was cold enough for me!

Thank you for the info, gives me more to think about.

[moldlady]

My mother had this really bad with the eyes. She wore very dark sunglasses becaue the sun bothered her so much. She put drops in the eyes 3 times a day and it only helped the symptoms but did not cure. She could not cry either..... no tears.

The underlying causes of this can be many things. It can be heavy metals from lots of shots and foods that contain them not to mention mercury from fillings, paint, or broken light bulbs, etc. The heavey metals can depress the immune system to the point of not being able to fight off diseases such as caused by bad bacteria and fungus. Antibiotics will kill off the bad bacteria but then the fungus goes unchecked and takes over the whole body. I believe that many that do not have a genetic propensity to celiac can acquire it by having heavy metals and /or fungus in the intestines. Either way, one has trouble keeping the intestines healthy for best absorption of nutrients for the body to be well.

I would suggest a lifestyle of no gluten, no sugars or white rice or potato starch, limited high sugar fruits (grapes, apples, bananas, etc.), and this will not only starve the fungus/yeast but it will also help heal the intestines. Pump your body with good probiotics to replace the ones that were killed off by antibiotics. Natren.com has a wide assortment of human strains to choose from. I recommend HT for the intestinal problems. For the heavy metals? I suggest making your own green drinks for detoxing. Detox. baths or saunas... I've posted the formulas on this forum elsewhere. AC also helps for Herz. reactions and die off. You will actually get a bit worse before you get better because when the yeast dies off it releases mycotoxins into the system. Also for the heavy metals... go slow.... used coriander in recipes ( a taste kinda like cinn. but not exactly), a sprinkle of dried cilantro on salads and things or in your salsas.

If you get to detoxing too fast: activated charcoal absorbs mycotoxins and detox baths help pull them out and also the heavy metals too. Exercise and sweating helps tremendously if you can do this.

Whew... that's enough for now... if you have specific questions JLMK.

Moldlady

[Gemini]

My mother had this really bad with the eyes. She wore very dark sunglasses becaue the sun bothered her so much. She put drops in the eyes 3 times a day and it only helped the symptoms but did not cure. She could not cry either..... no tears.

The underlying causes of this can be many things. It can be heavy metals from lots of shots and foods that contain them not to mention mercury from fillings, paint, or broken light bulbs, etc. The heavey metals can depress the immune system to the point of not being able to fight off diseases such as caused by bad bacteria and fungus. Antibiotics will kill off the bad bacteria but then the fungus goes unchecked and takes over the whole body. I believe that many that do not have a genetic propensity to celiac can acquire it by having heavy metals and /or fungus in the intestines. Either way, one has trouble keeping the intestines healthy for best absorption of nutrients for the body to be well.

I would suggest a lifestyle of no gluten, no sugars or white rice or potato starch, limited high sugar fruits (grapes, apples, bananas, etc.), and this will not only starve the fungus/yeast but it will also help heal the intestines. Pump your body with good probiotics to replace the ones that were killed off by antibiotics. Natren.com has a wide assortment of human strains to choose from. I recommend HT for the intestinal problems. For the heavy metals? I suggest making your own green drinks for detoxing. Detox. baths or saunas... I've posted the formulas on this forum elsewhere. AC also helps for Herz. reactions and die off. You will actually get a bit worse before you get better because when the yeast dies off it releases mycotoxins into the system. Also for the heavy metals... go slow.... used coriander in recipes ( a taste kinda like cinn. but not exactly), a sprinkle of dried cilantro on salads and things or in your salsas.

If you get to detoxing too fast: activated charcoal absorbs mycotoxins and detox baths help pull them out and also the heavy metals too. Exercise and sweating helps tremendously if you can do this.

Whew... that's enough for now... if you have specific questions JLMK.

Moldlady

Moldlady....I wanted to respond to some of your advice given here....not that your advice isn't good because some of it is very insightful and worth reading. However, as far as acquiring Celiac, you either have the predisposition for it or you don't and you have to trigger. I don't believe anyone can trigger for Celiac just by ingesting heavy metals. Having said that, I do agree that by eating a bad diet and using too many antibiotics, one can mess up their digestive tract to the point where many food sensitivities can develop.

I followed the anti-Candida diet very strictly twice in my life, along with taking Nystatin for awhile, and had tremendous results. The problem with that was it's a diet that a Celiac would do well on and I wasn't diagnosed then. So I am not certain now whether I truly had an over growth of Candida, had already triggered for celiac disease and didn't know it, or I had both. Probably both

but I'll never know for certain. Not that it matters anyhow because since going gluten-free, I have enjoyed a 100% recovery and my tummy has never been better. I do eat sugar, in measured amounts, with no problems. I personally think that many people who think they have Candida overgrowth may have celiac disease/GS also. It's hard enough getting the medical profession to look for celiac disease, never mind the other! That's when a person's intuition has to come into play and they need to listen to what their body is telling them. I did and I think that's why my recovery went so well.

Many people have a horrible time giving up sugar and, personally, I found that harder than gluten. But, when you factor in the effect on blood sugar levels, I can see why.

I think having diabetes is 100 times harder than having celiac disease.

Like your mother, I also had to wear dark glasses all the time because I was blinded by regular sunlight. This is a common side effect of Sjogren's, I later learned. Was your Mom a Celiac? Sounds like she definitely had Sjogren's. That has gotten better for me but I still do not go outside without sunglasses on.

Darlindeb25.....forget about the ANA or Rheumatoid Factor test and have the SSA and SSB done. The ANA/RH factor are VERY general tests and can mean one of many things regarding autoimmune problems. People with lupus, rheumatoid arthritis, celiac and other diseases can test positive on this....I did on both and have neither lupus or RA. It's my Sjogren's or my celiac

or possibly the reynaud's, even my hypothyroid that is triggering the high numbers. There is something called Overlap Syndrome, where people with multiple autoimmune disorders test positive on a number of these tests but it doesn't mean you have them all. In my opinion, I believe that many people with Overlap are actually suffering from celiac disease as the root cause and the doctor's are missing this totally. They just tell people that they have a "propensity towards autoimmune disorders and we don't know why." How many people on this forum want to speculate that we, as a group, know the answer to this?

I had a great doctors visit with a hematologist who really listened to me and she was not aware that celiac can cause some of these positive test results...she does now! I told her that if she has patients with these types of problems, she needs to council them on getting tested for celiac disease.

I can only hope she remembers all I told her about it.

[moldlady]

Gemini,

Hey no problem. I was told that even if one does not have the genetic predisposition that heavy metals will really mess up the digestive system/tract making it appear that one is celiac. Once the heavy metals are gone and the gut healed then they can once again tolerate the gluten. Same way with the yeast/fungus messing up the lining of the digestive tract. I read many on forums that have been able to return to the glutens after they had the other two in check or at least diminished.

I read one person say that every one is gluten intolerant now because they have changed the protein in the wheat. I'm hopin that they can provide me with some information along those lines.

No, the docs never tested my mom for celiac or heavy metals or for fungus but she was loaded with all of them. When I was with her I would control everything and she would get better. When I left, she went back to her old ways and got worse. So, that in itself told me how bad she was. If I'd known about all of this stuff 30 years ago, maybe I could have been able to help her better.

I'm assuming (without tests) that I may have this genetic link just because my body seems so stubborn to get well on a deep level. On the surface I look like the healthiest person around now as I'm never sick for 8 years now since changing my lifestyle. But there are deep seated things that I have to work on. I'm in my 4th week of gluten free for the most part other than trying two store bought green drinks with wheat and barley grass. Temporary sickness there and cured with charcoal. I hope that doesn't set me back too much.

Many people have food sensitivities that are really die off reactions or feeding the fungus in their systems in a major way. I think there is some confusion along those lines and people must listen to their own bodies.

ML

[darlindeb25]

Thanks Gemini--I wrote those tests down and I will definitely keep those in mind for the next doctor appt. My dry eye has been driving me nuts as of late, I think the winter months are the hardest, especially with the heat on. I will not discuss this with the doc I work for, he doesn't even think my dry eye is autoimmune to begin with, so I think it's a dead issue with him. Besides the fact, he is being totally obnoxious at this time of year--Jan thru March is never a good time of year with him. He seems to think it's the slow season, sure doesn't seem slow to me!!!!

Thanks for all the great info, you have been very helpful, as has everyone.

Deb

[jewi0008]

Gemini--honest, I do not know where I have been, I have never read this before, if you posted it, I must have missed it, I am sorry. For years and years I have had trouble swollowing bread and meats, sometimes to the point of not being able to breathe. Like I said, the doc I work for, who also is my eye doctor, will not even admit to my dry eye being autoimmune. He has not let me try Restatis, only Refresh or Systane. Maybe I will take my insurance and go elsewhere, wouldn't that frost him???? I have never been tested for Sjogrens, even though I have suspected it. I do have Raynauds, which I think is often assoiciated with Sjogrens. Raynauds is a form of arthiritis.

I just found this:

Open Original Shared Link

I can relate to many of these, of course, so can a celiac. Which, I understand, many times, celiac disease and sjogrens can go hand in hand too. So many of the autoimmune diseases do. I may just ask my PCP to be tested for this, just to be sure. Thank you!

Can anyone tell me what blood tests you need for Sjogrens? My mouth drives me CRAZY! I don't know what's wrong with it. Been this way for 4 years. My oral tissues kill. My gums. My teeth. Under my jaw. Sides of tongue. I'm going crazy....

[Gemini]

Can anyone tell me what blood tests you need for Sjogrens? My mouth drives me CRAZY! I don't know what's wrong with it. Been this way for 4 years. My oral tissues kill. My gums. My teeth. Under my jaw. Sides of tongue. I'm going crazy....

The two blood tests for Sjogren's are called SS-A and SS-B....they are looking for specific antibodies, just like in the Celiac testing. You sound like you have it as a sore tongue is one of the symptoms. Mine was so sore, at times, I had trouble eating. Good luck!

[itchygirl]

Another good way to get a Sjogren's diagnosis is a simple lip biopsy (its a teeny biopsy, almost painless). If you live near NIH they have a study going on now and you can get a biopsy for free

Open Original Shared Link

I have Sjogren's and have had wildly variable bloodwork over the years so I was glad I had the lip biopsy and it went very well.

Deb...I'm not sure how a doctor would keep you from trying systane, its over the counter. Just go get some and don't tell him.

Hi to all the other Sjogren's people!

[joyhart]

I've been reading with interest the previous posts on "Sjogren's Syndrome." (I didn't realize it affected other areas beside the eyes.)

I have Celiac Disease, and I'm sure Sjogren's too.

I have an appointment next week to see an ENT about a deep lesion on my tongue, periodic blisters (salty foods?), etc. I have symptoms of Oral Lichens Planus, and thought maybe that's why my tongue has been so sore lately. But maybe the tongue problems are from Sjogren's!

Joy