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Sjogren's


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#16 Gemini

 
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Posted 03 November 2012 - 08:30 PM

June27.....I am sitting here reading the Autumn 2012 edition of the Journal of Gluten Sensitivity, which is published quarterly by Celiac.com and there is an article on the association between Sjogren's and Celiac. What jumped off the page at me?
This statement.....complications of Sjogren's include tooth decay and corneal ulcers. So.......it looks like another piece of the puzzle is coming to light for you. Maybe you should take a copy of the article to your doctor to further educate them. This should convince them that you need the blood work! :)
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#17 cyberprof

 
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Posted 03 November 2012 - 09:01 PM

June27.....I am sitting here reading the Autumn 2012 edition of the Journal of Gluten Sensitivity, which is published quarterly by Celiac.com and there is an article on the association between Sjogren's and Celiac. What jumped off the page at me?
This statement.....complications of Sjogren's include tooth decay and corneal ulcers. So.......it looks like another piece of the puzzle is coming to light for you. Maybe you should take a copy of the article to your doctor to further educate them. This should convince them that you need the blood work! :)


Wow, good catch Gemini!
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#18 Gemini

 
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Posted 04 November 2012 - 08:07 AM

Wow, good catch Gemini!


Anything having to do with Sjogren's always catches my little dry eyes! :lol:

Actually, you have no idea how many times this has happened throughout my life. When I was diagnosed with Celiac, the first food shopping trip after dx, I was wandering around the store trying to figure out what was safe to eat and I nearly ran my cart into a new display that Whole Foods had. The display was for their new Gluten Free bakehouse items. They had just started it up and had products in the store to sell. I looked up and saw my first ever loaf of gluten free bread. That's when I thought this whole thing might not be as bad as everyonbe else seemed to think it was.

It's strange, though.....many times when I have had problems or been seeking answers, they have come to me in strange ways. I will see an article in a magazine I ordinarily never read...the answers or information just seem to appear out of nowhere, sent to me at the right time. I think it's the little guardian angels at work!
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#19 Gemini

 
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Posted 05 November 2012 - 12:23 PM

Here's another article that mentions corneal ulcers with Sjogren's Syndrome....http://www.lupus.org...2270&zoneid=526. It is from the Lupus Foundation so the source is a good one. Scroll down and read the info under Sjoigren's Syndrome.
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#20 june27

 
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Posted 05 November 2012 - 03:59 PM

Gemini - thanks for all of the great info!! I am just returning from a weekend in warm Orlando (and was quite disappointed to return to 30-something degree weather at the airport. To make matters worse, I couldn't for the life of me remember where I had parked, so they had to have someone drive me around to locate my car - how embarrassing!!).

Once I get myself some dinner, I am going to settle in and read those articles...
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#21 Gemini

 
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Posted 06 November 2012 - 08:36 AM

Gemini - thanks for all of the great info!! I am just returning from a weekend in warm Orlando (and was quite disappointed to return to 30-something degree weather at the airport. To make matters worse, I couldn't for the life of me remember where I had parked, so they had to have someone drive me around to locate my car - how embarrassing!!).

Once I get myself some dinner, I am going to settle in and read those articles...


You should have told them you are suffering from brain fog because of Celiac Disease and that's why you couldn't find your car.....watch their eye balls spin! :P
Logan is tough for parking so I usually take the Logan Express in. Airport parking is scary.... :ph34r:
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#22 june27

 
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Posted 06 November 2012 - 08:28 PM

thanks again for all of the info - i will make sure i am armed before my next doc appt :)

i wish i could blame it on the celiac. unfortunately, i think it was just too early when i got to the manchester airport (i had a 7am flight when i left), and just not awake enough to pay attention to where i parked. first (and hopefully last) time for that.
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#23 june27

 
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Posted 15 November 2012 - 08:27 AM

I figured I'd post an update...
I finally made an appt with my primary care doc to ask about a referral to a rheumatologist. I was prepared to fight for this, expecting her to push back (the eye doc has not been very proactive on this front). She was awesome, and all of my worrying was for nothing. She suggested Sjogren's before I had a chance to, and she asked about other symptoms that I might have indicating Lupus, RA, Reynaud's, etc. Then she had my blood drawn today to test for SSA, SSB, ANA, and two others (I think one might be for RA, and the other for general inflammation). If anything comes back positive, she will send me to rheumatologist.

So, hopefully I will have some information (and ultimately answers) soon...

I guess I have been asking the wrong doc for help all of these years. I thought that the eye doc was the right channel to go through for eye issues, but it turns on my primary care is much better!! I need to remember this for the future!

Thanks for all of the support!
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#24 Gemini

 
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Posted 15 November 2012 - 12:49 PM

I figured I'd post an update...
I finally made an appt with my primary care doc to ask about a referral to a rheumatologist. I was prepared to fight for this, expecting her to push back (the eye doc has not been very proactive on this front). She was awesome, and all of my worrying was for nothing. She suggested Sjogren's before I had a chance to, and she asked about other symptoms that I might have indicating Lupus, RA, Reynaud's, etc. Then she had my blood drawn today to test for SSA, SSB, ANA, and two others (I think one might be for RA, and the other for general inflammation). If anything comes back positive, she will send me to rheumatologist.

So, hopefully I will have some information (and ultimately answers) soon...

I guess I have been asking the wrong doc for help all of these years. I thought that the eye doc was the right channel to go through for eye issues, but it turns on my primary care is much better!! I need to remember this for the future!

Thanks for all of the support!


I am so glad you got what you wanted and, it sounds like, a positive experience. That is rare indeed for us. Just remember.....RF (rheumatoid factor) and ANA can be elevated from Sjogren's alone. Mine are and I don't have lupus, although I do not go to a rheumatologist. I have zero symptoms of lupus so no lupus.

Let us know what the outcome is...I am very interested to see what the Sjogren's antibodies show! Good luck!
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#25 june27

 
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Posted 27 November 2012 - 03:22 PM

Test results:
ANA - positive
SSA, SSB, rheumatoid factor, and ESR all negative.
I have an appointment with rheumatologist in February.

I also talked to my naturopathic doctor - she has some other natural remedies to try to help with the inflammation as well. So, we'll see what happens next.. I will bring up the additional food allergies as well. We did do a IgG panel before this whole process started, and I have been avoiding all of the ones that came back high. But might be worth revisiting...

Thanks!
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#26 Gemini

 
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Posted 28 November 2012 - 08:43 AM

Test results:
ANA - positive
SSA, SSB, rheumatoid factor, and ESR all negative.
I have an appointment with rheumatologist in February.

I also talked to my naturopathic doctor - she has some other natural remedies to try to help with the inflammation as well. So, we'll see what happens next.. I will bring up the additional food allergies as well. We did do a IgG panel before this whole process started, and I have been avoiding all of the ones that came back high. But might be worth revisiting...

Thanks!


Well...that's interesting! I hope you still try the Restasis, even though your antibodies are negative. You may want to be tested again down the road to see if things have changed.
ANA can be elevated from Celiac so that might be the cause.

So you found a Rheumatologist?
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#27 june27

 
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Posted 28 November 2012 - 09:22 AM

Well, my primary care referred me to someone. Someone I know told me about another one nearby, but since I have HMO, insurance won't cover him. So, we'll see how this guy is :)

I have been on the Restasis for a few weeks now. No real notable difference yet (not sure how long it takes to work). My eyes still have a fair amount of inflammation and are dry - though not sure which is the chicken/egg in this scenario.
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#28 Gemini

 
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Posted 28 November 2012 - 09:40 AM

Well, my primary care referred me to someone. Someone I know told me about another one nearby, but since I have HMO, insurance won't cover him. So, we'll see how this guy is :)

I have been on the Restasis for a few weeks now. No real notable difference yet (not sure how long it takes to work). My eyes still have a fair amount of inflammation and are dry - though not sure which is the chicken/egg in this scenario.


Restasis needs a bit of time to kick in and work. It is used to suppress inflammation and we all know that can take longer than we like. I think it was at least 6 weeks before I noticed any difference but it usually takes a while and then you start to notice that your eyes feel better....it's not a hugely dramatic thing like going gluten-free and having the Big D stop! ;) Some people see no difference but others do. It's one of those things you have to try for awhile to see if it makes any difference.

Good luck with the Rheumy crapshoot! I always go in with some hope that this doctor will be different but I am usually disappointed. If you find a keeper, please let me know in case I need one down the road. I hate going in blind. :o Good luck with everything!
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#29 Laenie

 
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Posted 14 December 2012 - 02:23 PM

I have a question regarding dry eyes, but will start with some background info...

I was diagnosed with Celiac in February after starting to see a Naturopathic Dr for signs of inflammation. I have suffered with seasonal allergies for at least 25 years, taking prescription drugs for them for almost 20 years, and getting allergy shots for the past 6 years - and still had allergy symptoms worse than most people (both in severity, and in duration). In the past 5-10 years, I have been having cornea erosions (which are the most painful thing I have ever endured). When I get them (even a small one), I am out of work for a full week. The cornea erosions have really changed my life - I will go to extreme measures to prevent getting anther one. Once it starts getting cold in the fall, I need to have a humidifier going in my bedroom (and bring one along if I travel anywhere). I use ointment in my eyes every night before going to sleep. I use Systane drops in my eyes frequently at work when the air gets dry. At one point, my eye doctor commented that some of the erosions seemed to be caused by inflammation in my eyes (during allergy season), and that if we could get that under control, we might be able to control the erosions as well. This inspired me to see if Naturopathic medicine might be able to help me since it seemed that my problems were systemic. The Naturopathic Dr is the one that made the Celiac diagnosis.

I have been gluten/dairy free since February and have noticed a big improvement in my allergies (though they are not completely gone yet). I am hoping that next year will be even better, since I will have had more time to heal. It is starting to get colder/drier, and I have noticed that my eyes have been really irritated lately. I was hoping that maybe I would not need the humidifier any more, but I was wrong. Last night I put the humidifier on, and my eyes are much happier today.

So, my question is about Sjogren's...
I have heard that there is a connection with Celiac and Sjogren's and have been wondering if there is a possibility that I have Sjogren's as well. When I asked my eye doctor, he said he didn't think the dryness was severe enough to be Sjogren's. When he told me this, I believed it. But, now that my eyes are as dry as ever, I am starting to wonder again. I know that it is possible that my body is probably still healing from the damage of Celiac, but I am curious what other people with Sjogren's have experienced, and if it is worth pursuing getting tested. I don't really know much about Sjogren's - I first saw it when I was researching the recurrent cornea erosions. When I was diagnosed with Celiac, I saw it again on the list of 'companion auto-immune diseases"...


Hi, I have Sjogren's and have a gluten intolerance, I also have many allergies and about 10 years ago (before either diagnosis) began have dry eyes along with bouts of dehydration. It took 8 years to diagnosis the Sjogren's and another year for the gluten-intolerance. I tried Restasis with some relief but after both diagnosis my eye doctor prescribed an allergy eye drop that really helps! I put in 2 drops each eye every evening and in the morning I can open my eyes easily, and I have begun wearing contacts again! Just an idea if you want to ask your eye doctor. laenie
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#30 june27

 
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Posted 16 December 2012 - 08:06 AM

Thanks Laenie - I have been using Lotemax for over 2 years now. It is a steroid drop for allergies - he chose that one over some others because it can be used long term. However, I do have to go in every 6 months or so to make sure the pressure in my eyes is ok (a side-effect of this drop). When he gave me the Restasis, he was concerned that it might not do the trick when my allergies kick in - so I suspect I might be on a combination of drops for a while until I can get things under control. The Lotemax definitely helps, but by itself it just wasn't doing the trick :)

My naturopathic doc is having me try some different supplements to try to help so I can get off the steroid prescriptions (eye drops and nasal for allergies). I plan to start after the holidays...
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