Sjogren's Anybody?

[Guest imsohungry]

Hey ya'll,

I have been suffering horribly with my dry eyes, mouth, skin, bowels, etc. my whole life; a few months ago, my rheumy said he thinks I have Sjogren's secondary to my lupus...however, nothing my opthamologist seemed to do helped my eyes. I tried Restasis (allergic), and he put plugs in the lower tear ducts...still no results. Today, I went in at lunch pleading for some help, and he put plugs in my top ducts (sp?). Finally, this afternoon, I've had some relief!!!! I'm so excited. My question is, does anybody else on this site have this? I know many of us have multiple auto-immune probs. besides just Celiac. I'm just curious; although auto-immune problems run throughout my family history (especially in the women), no living relative has Sjogren's. So I have no one to talk to about my frustrations. Thanks, Julie

[ravenwoodglass]

I did, horribly. The good news is within a month gluten-free this problem went away along with a host of others. I weaned myself off all meds (with doctors knowledge) before going gluten-free. I figured I wouldn't really know if being gluten-free was helping if I continued to take the 5 of so prescriptions I was taking for arthritis, IBD, fibromyalgia, peripherial neuropathy, ataxia and GERD. I reasoned I could always start taking them again. After 2 months with no symptoms, even arthritis was gone, I had a pill party as I said good bye to them on a Sunday afternoon. It felt so good to flush those suckers down the toilet. Anyway, hopefully your Sjogrens and other autoimmune problems will disappear like mine did.

[Guest imsohungry]

Hi,

I'm glad to hear that your Sjogren's seems to have responded well to going gluten-free. I hope it continues in the future.

As for me, I have seen some obvious positive diffences in many areas of my health...however, no sign yet that the dry eyes and mouth are subsiding.

However, I never give up hope. Take care. -Julie

[jenvan]

Thought i'd refresh this old thread. Anyone else with Sjogren's or Julie-feeling any better? My NP thinks I should be tested...but I think I have very little symptoms associated with Sjogren's... I also had an ANA that was negative but I guess that doesn't necessarily rule it out completely. Just curious to hear from others....

[TCA]

Just wanted you to know that there is a med. journal paper linking it to Celiac.

Open Original Shared Link

[chrissy]

i've been wondering if one of my twins has sjogren's. she has had dry eyes for a couple of years. our eye doc said it is unusual in someone her age, he has about a handful of young patients with dry eyes. my sister's daughter has recently been diagnosed with sjogren's---our eye doc says it could be the cause of tianna's dry eyes since it is often associated with celiac. kassie just got contacts, but tianna can't get them because of her dry eyes----i guess this gives people a way to tell them apart.

christine

[rosesim5]

Hi Julie:

I too have Sjorgren's and Lupus. I have been lucky so far to be able to get away with using Systane Eye Drops in the single vials only. These ones are preservative free, and seem to help.

I often wake up at night to put drops in my eyes , take a drink and I also use Biotene toothpaste and mouthwash. These two products really help alot.

My mother was diagnosed with Celiac Disease about two years ago. My youngest daughter was failure to thrive and had a biopsy . The doctor doing the biopsy said it looked like Celiac but the blood tests were negative. She has yet to have a defintive diagnosis. I put her on gluten-free diet for 7 yrs and she grew and her health improved. She is currently eating wheat and has bloats , joint pains occasionally.

I had a biopsy and tested negative but, feel much better when I do the gluten-free and Dairy Free diet.

I am thinking I need to just get back to a cleaner diet and start to feel better. I wake up aching everyday now that it's winter and the dryness is terrible.

I was quite interested to read about the relationship between Celiac Disease and Lupus.

Sandra

Hey ya'll,

I have been suffering horribly with my dry eyes, mouth, skin, bowels, etc. my whole life; a few months ago, my rheumy said he thinks I have Sjogren's secondary to my lupus...however, nothing my opthamologist seemed to do helped my eyes. I tried Restasis (allergic), and he put plugs in the lower tear ducts...still no results. Today, I went in at lunch pleading for some help, and he put plugs in my top ducts (sp?). Finally, this afternoon, I've had some relief!!!! I'm so excited. My question is, does anybody else on this site have this? I know many of us have multiple auto-immune probs. besides just Celiac. I'm just curious; although auto-immune problems run throughout my family history (especially in the women), no living relative has Sjogren's. So I have no one to talk to about my frustrations. Thanks, Julie

[Cape]

Hi Julie:

I too have Sjorgren's and Lupus. I have been lucky so far to be able to get away with using Systane Eye Drops in the single vials only. These ones are preservative free, and seem to help.

I often wake up at night to put drops in my eyes , take a drink and I also use Biotene toothpaste and mouthwash. These two products really help alot.

My mother was diagnosed with Celiac Disease about two years ago. My youngest daughter was failure to thrive and had a biopsy . The doctor doing the biopsy said it looked like Celiac but the blood tests were negative. She has yet to have a defintive diagnosis. I put her on gluten-free diet for 7 yrs and she grew and her health improved. She is currently eating wheat and has bloats , joint pains occasionally.

I had a biopsy and tested negative but, feel much better when I do the gluten-free and Dairy Free diet.

I am thinking I need to just get back to a cleaner diet and start to feel better. I wake up aching everyday now that it's winter and the dryness is terrible.

I was quite interested to read about the relationship between Celiac Disease and Lupus.

Sandra

Sandra,

I have been tested for Lupus several times as I have many of the Lupus symptoms, but all were negative, as well as my celiac disease blood test (I was 2 weeks off of gluten) and biopsy (I was 3 months off of gluten). Another GI doc did another blood test to see if I have either of the two genetic markers for celiac disease. He was skeptical that I would and he was a bit sheepish to tell me that I do have the marker that all of the people with celiac disease have, but then he added so does a third of the population and not all of them are Celiacs. His hypothesis is that I could have been early in any damage in my intestines and by stopping gluten three months before my biopsy could given it a chance to heal. He said I should consider myself a Celiac.

When I stopped gluten, my bursa in my shoulders, hips, knees and feet felt so much better. But... I still had pain. I have found intolerances to foods in the Night Shade family (tomatoes, potatoes, peppers, eggplant) and soy, dairy, apples, corn, nuts, millet, sugar, coffee, wine [red and white], and some others. I have stopped as much sugar as I can - How can you eat rice bread toast without blackberry jam? - but I still have pain. My friend who is an allergist/immunologist says that she sees a few women in para-menapause who have my same symptoms who also come up gluten intolerant. Homones can be a big factor with the pain too, she says.

I have never heard of Sjorgren's, but my skin and finger nails are so dry. No lotion seems to help. I will ask my dermotologist about it.

Bye, Cape

[Nancym]

I'm in the process of getting evaluated by a rhuemy, for other AI diseases and he mentioned Sjogren's. My eyes aren't terribly dry, or my mouth either. But actually, now that he mentioned it, my left eye is always bloodshot and feels a bit irritated. So maybe it really is! Anyway, I have a mildly positive ANA test and a lot of Lupus symptoms. So... I guess we shall see. Oh yes, I feel very tired a lot. It has actually gotten worse post-gluten. *sigh*

[tealeaves92]

I know it has been a while since you posted, but I thought I'd reply anyway.

I was diagnosed with Hashimoto's Thyroiditis (autoimmune) in College. All my life doctors have told me I have Irritable Bowel Syndrome. WHich magically went away, for the most part, when I went gluten-free 2 years ago. (I am 32 years old). I have iron-deficiency anemia on and off as well. I also have chronic swollen parotid glands and sublingual salivary glands, and have had unexplained granulomas on my chest xrays. I have moderate dry eyes, but no dry mouth problems. I also have eye floaters, and "Drusen" deposits in my eyes, which usually occur in old people as a precursor to macular degeneration.3 years ago I had liver complications (Intrahepatic Cholestasis) with my second pregnancy, and now have gallbladder issues.)

However NONE of my doctors take me seriously. They focus on one issue at a time and wave me away. I am thinking I have Celiac, Hashimoto's, and possibly even Sjogren's (which would explain the lung granulomas and chronic swollen glands.)

Basically I am frustrated. I just found a naturopath who is going to test me for Celiac and liver issues and try to address my continuing thyroid symptoms. So I guess that is a start. Having been seriously disappointed and frustrated by Western medicine, I am going to dive into natural remedies for a while and see if I can turn the tide of symptoms.

I'd love to communicate with some others out there who have autoimmune issues. Are there actually some doctors out there who connect the dots and address the whole picture?

I am an ex-nurse, used to work ICU and ER, so I know my way around Western Medicine and terminology, and yet can't find a doctor who will listen to me. I am so frustrated!

[Nancym]

Maybe I was lucky but I went in with a list of things that I felt were either not right or else things that had happened in the past. I said, "I have a suspicion I might have an autoimmune disease". My GP sent me to a rheumy who diagnosed me with ankylosing spondylitis and he said a lot of his patients have food intolerances and that AS is associated with a "leaky gut". He put me on a med to treat the AS and the leaky gut and GOSH! I'm doing so much better! I have had aches and pains in joints and connective tissue I didn't know could ache or hurt, like the ones between the ribs!

It is very interesting but the more I read about autoimmune disease research the more it looks like most of them have a connection to bacteria or antibodies escaping from the interestines via damage done to the intestines. And it makes sense if Dr. Fasano's research is correct. Apparently gluten sensitivity cause the "tight junctions" to open up in the intestines (see the hormone zonulin) and lets antibodies and stuff into the blood stream.

Anyway, I really was surprised by the diagnosis of AS as I was convinced I had Lupus but after reading up on it, it makes a whole lot of sense.

[tiredofdoctors]

I have Sjogren's. Dry eyes, dry mouth, dry everything . . . . . So far, I'm just using Systane eye drops 4x day and Genteal gel at night -- doesn't do much, though. For the salivary glands, especially when they're inflammed, I suck on lemon drops. Makes the "back-up" sort of come on out! I also use moist heat to my neck -- sometimes I look like I'm getting the mumps!

For the other dryness -- well, given that I'm a women's health PT, I have the absolute BEST lubricant there is . . . if you need info, e-mail me at bodyworxinc@hotmail.com! I'll be happy to either send you some samples or just give you the number! . . . Lynne

[jenvan]

Lynne--

You have that too? Poor thing... (Did you get my e-mail?)

What are your eye symptoms like? The Celiac nurse I know thought I should get tested...but my GP didn't think I had it, as my ANA tests came back negative. My one issue is tired, hot, burning, dry-type eyes...whether I've had plenty of sleep or not....everyday. I have to close my eyes and roll them around a lot to soothe. I used to think it was just from being tired all the time...now I am thinking that less and less... Did you go to an optha. to get tested/diagnosed? So tired of going to another doc appt--I think my insurance company will drop me soon!

[carriecraig]

I'm going to add on to this older thread...

I have been gluten-free for over a year, and have been feeling great for the past few months. Recently though, I've noticed that my mouth has been extremely dry. My eyes have always been dry, but I just thought it was from the medications that I was taking (for asthma and allergies). I have stopped taking all medicines, but my mouth is still so dry. I drink a lot of water throughout the day, but there is still no relief. I have an appointment with my PCP and hope she will run some tests for me.

[chojny997]

Hi

I come from Poland

I am 28 and I have celiac and sjogren

My rheumatologist said tahat my sjogren is secondary sjogren

He said that sjogren syndrome and celiac is one disease.

My diagnosis celiac in December 2008

A section of the small intestine mucosa with a completely smooth surface, without outlines of villi and intestinal crypts.

The stroma shows an intense chronic plasma cell inflammation.

Intraepithelial lymphocytes >40 IEL/100 EC.

The morphological picture corresponds to villous atrophy IIIc grade acc. to Marsh classification.

My test results:

4 December 2008 ( diagnosis) :

Endomysium IGA +++

Endomysium IGG ++

Gliadin IGA ++

Gliadin IGG +

16march.2009

p/ transglutaminazie EMA IGA - 66 ( 0-8 )

p/ endomysium TGA IGA - 529 ( 0-20 )

3.april.2009

p/ transglutaminaze TGA IGA - 9 ( 0-8 )

16.april.2009

p/ transglutaminaze TGA IGA - 6 ( 0-8 )

p/ endomysium EMA IGA - 143 ( 0-20 )

10 may 2009

p/ endomysium EMA IGA - 85 ( 0-8 )

My antibody is down.

But my sjogren syndrome is excited / incited / excited

My eye is dry, my mouth is dry.

My pain in joint ( fingers hand and fingers in my legs ) is big.

I take steroid on reumatogist (Metypred steroid)

I have osteoporosis.

Lack testosterone - i take injection (testosterone steroid)

MGD - meibomian gland dysfunction.(dry eye)

trembling muscle

Dry skin

This is my complication of celiac.

When my sjogren syndrome is stoping?

[ravenwoodglass]

Hi

I come from Poland

I am 28 and I have celiac and sjogren

My rheumatologist said tahat my sjogren is secondary sjogren

He said that sjogren syndrome and celiac is one disease.

My diagnosis celiac in December 2008

A section of the small intestine mucosa with a completely smooth surface, without outlines of villi and intestinal crypts.

The stroma shows an intense chronic plasma cell inflammation.

Intraepithelial lymphocytes >40 IEL/100 EC.

The morphological picture corresponds to villous atrophy IIIc grade acc. to Marsh classification.

My test results:

4 December 2008 ( diagnosis) :

Endomysium IGA +++

Endomysium IGG ++

Gliadin IGA ++

Gliadin IGG +

16march.2009

p/ transglutaminazie EMA IGA - 66 ( 0-8 )

p/ endomysium TGA IGA - 529 ( 0-20 )

3.april.2009

p/ transglutaminaze TGA IGA - 9 ( 0-8 )

16.april.2009

p/ transglutaminaze TGA IGA - 6 ( 0-8 )

p/ endomysium EMA IGA - 143 ( 0-20 )

10 may 2009

p/ endomysium EMA IGA - 85 ( 0-8 )

My antibody is down.

But my sjogren syndrome is excited / incited / excited

My eye is dry, my mouth is dry.

My pain in joint ( fingers hand and fingers in my legs ) is big.

I take steroid on reumatogist (Metypred steroid)

I have osteoporosis.

Lack testosterone - i take injection (testosterone steroid)

MGD - meibomian gland dysfunction.(dry eye)

trembling muscle

Dry skin

This is my complication of celiac.

When my sjogren syndrome is stoping?

I saw that you were trying to contact me and were unable to. Please let me know here what your question is and I will try to answer.

[chojny997]

Hi ravenwoodglass

I have celiac and sjogren

My english is not good. Please use simple english for easy comunicating.

I want to stop sjogren syndrome.

I read your post:

I did, horribly. The good news is within a month gluten-free this problem went away along with a host of others. I weaned myself off all meds (with doctors knowledge) before going gluten-free. I figured I wouldn't really know if being gluten-free was helping if I continued to take the 5 of so prescriptions I was taking for arthritis, IBD, fibromyalgia, peripherial neuropathy, ataxia and GERD. I reasoned I could always start taking them again. After 2 months with no symptoms, even arthritis was gone, I had a pill party as I said good bye to them on a Sunday afternoon. It felt so good to flush those suckers down the toilet. Anyway, hopefully your Sjogrens and other autoimmune problems will disappear like mine did.

I have hope that you have ration.

I wait on moment, when my antibody ( transglutaminaza, endomysium, gliadyn ) to be zero.

How you think? sjogren to be stoping.

I know ,that you have many disease ( IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis )

You write, that all your problem to lower your body when you go to gluten free diet.

When your disease disappearance?.

When your antibody equal zero

Maybe, you waiting 1 month or 2 month?

I have a little salivation and tears.

I dont to lose salivation and tears.

I take steroid of reumatologist but my osteoporosis to be deterioration.

I want to know your opinion.

You have knowledge because you have celiac disease and secondary disease.

Your diet is gluten free diet and eliminating soy. Only this eliminating?

My reumatoloyst said that my sjogren is secondary sjogren and celiac and sjogren this one disease.

I dont know answer, when my sjogren to be stoping and I to be can no take steroid.

I debate - My sjogren is dependent:

my antibody or my situation in my intestine?

In february I was in hospital on rheumatology

MY antibody :

RF is normal

C3 is normal

C4 is normal

ANA is negative

C anca is normal

p anca is normal

Diagnosis doctor- secondary sjogren

biopsy salivary gland focus score 4

Help me, please your opinion.

Thank you

Paul

[ravenwoodglass]

Hi ravenwoodglass

I have celiac and sjogren

My english is not good. Please use simple english for easy comunicating.

I want to stop sjogren syndrome.

I read your post:

I did, horribly. The good news is within a month gluten-free this problem went away along with a host of others. I weaned myself off all meds (with doctors knowledge) before going gluten-free. I figured I wouldn't really know if being gluten-free was helping if I continued to take the 5 of so prescriptions I was taking for arthritis, IBD, fibromyalgia, peripherial neuropathy, ataxia and GERD. I reasoned I could always start taking them again. After 2 months with no symptoms, even arthritis was gone, I had a pill party as I said good bye to them on a Sunday afternoon. It felt so good to flush those suckers down the toilet. Anyway, hopefully your Sjogrens and other autoimmune problems will disappear like mine did.

I have hope that you have ration.

I wait on moment, when my antibody ( transglutaminaza, endomysium, gliadyn ) to be zero.

How you think? sjogren to be stoping.

I know ,that you have many disease ( IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis )

You write, that all your problem to lower your body when you go to gluten free diet.

When your disease disappearance?.

When your antibody equal zero

Maybe, you waiting 1 month or 2 month?

I have a little salivation and tears.

I dont to lose salivation and tears.

I take steroid of reumatologist but my osteoporosis to be deterioration.

I want to know your opinion.

You have knowledge because you have celiac disease and secondary disease.

Your diet is gluten free diet and eliminating soy. Only this eliminating?

My reumatoloyst said that my sjogren is secondary sjogren and celiac and sjogren this one disease.

I dont know answer, when my sjogren to be stoping and I to be can no take steroid.

I debate - My sjogren is dependent:

my antibody or my situation in my intestine?

In february I was in hospital on rheumatology

MY antibody :

RF is normal

C3 is normal

C4 is normal

ANA is negative

C anca is normal

p anca is normal

Diagnosis doctor- secondary sjogren

biopsy salivary gland focus score 4

Help me, please your opinion.

Thank you

Paul

Hello Paul, I replied to you on the other post where you asked how to get in touch with me. I hope the reply is helpful to you.