Sjogren's Test Q's

[BlackShoesBlackSocks]

Hey!

 

So l went to the eye doctor, finally, this week and got prescribed Resatisis. l am hoping it will work, l didn't mention anything about suspected celiac or possible dry eye connection.  l was happy enough to have the doc confirm and get something that might help the pain and inflammation.

 

l think being gluten free in combination with the Restasis might hold a little more promise than just the Restasis or either alone, it doesn't seem to work for a lot of people.

 

l got curious tonight and read about some tests l can order myself for Sjorgren's. pretty inexpensively-SSA-SSB.

 

What l'm wondering, if this is at all possible...could my gluten free diet affect the results at all? They test for completely different things than anything Celiac related but being gluten-free has shown to benefit many of the Sjogren's patients. l see no reason being gluten free should affect it, l don't know much about  labs but did read that ANA labs can be affected, though (less obvious positive results while gluten free).

 

l'd love to just take the test this week and have an answer, it's not accurate in all people who might have this, but, the dry eye, Raynaud's, and dry mouth really stand out to me and testing for something while still being gluten free would be reaaalllyy convenient, without having to go back to gluten yet.

[Posterboy]

Blackshoesblacksocks,

Have your doctor check your Vitamin D levels if they have  not already.

I recently was diagnosed with low Vitamin D levels and had horrible dry eyes.

Very gritty all the time.

Since taking Vitamin D my dry eyes have improved dramatically.

Here is the Vitamin D Council research on this topic.

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*** this is not medical advice but I know taking a catch up dose of 1,000 to 5,000 IU's daily of Vitamin D helped my dry eyes.

I think I have heard Knitty Kitty say D3 is the form you need and is the form I took to catch up my low Vitamin D levels.

Because Vitamin D is a fat soluble vitamin is should be taken with meals for best absorption.

I am not sure why one is better than the other kind(s) though.

I hope this is helpful.

posterboy,

[BlackShoesBlackSocks]

Thanks

 

They did a few months back and l had the 4, D3 25K  RX'd I so l am good there.  l went into the underweight range so thyroid, D, potassium, and maybe some other things  lm not aware of were screened for. The D and the potassium was low but all else normal.

 

There are a number of causes, l always blamed allergies but after years of treating allergies, lm glad l mentioned it the meds don't help.

 

It's interesting that bowel and digestive symptoms are also listed in Sjogren's, l am still experiencing it but with some weight gain now l find it all a little less anxiety inducing 

[Gemini]

Hi BlackShoes........yes, you can absolutely test for Sjogren's antibodies while on the gluten-free diet.  The only testing that is affected by the gluten-free diet is Celiac.  However, you might find that over time on the gluten-free diet, any raised antibody levels may come down somewhat because, by going gluten free, you are removing the root cause  of the systemic inflammation.......gluten.  From personal experience having both Sjogren's and Celiac, the benefits of going gluten free had an impact on my comfort levels with dry eye/dry mouth.  I never re-tested my SS-A and SS-B antibodies after diagnosis because most doctor's won't re-test once they know you have it.  I think both cost and a "what does it matter" attitude has a lot to do with that.  They don't seem to find lowered numbers relevant, which is bizarre but we are talking the medical profession here.  You are correct in that you can still have Sjogren's and be negative on the testing.  if your symptoms are extreme, then you most likely have it.  Sjogren's dryness is not the same as run of the mill dry eye from aging and other causes.  It's like dry eye on steroids. 

Give the Restasis time to work.  It took at least a couple of months of use before things improved.  It wasn't dramatic for me but at one point I stopped using it to see what would happen and my eyes went right down the rabbit hole.  That's when I knew just how much it was helping me.  You seem to have a good doctor because I went through a few who wouldn't even prescribe it as they "thought" it wouldn't help.  Restasis is one of those meds you have to try for awhile to see if it helps. No doctor can tell if it won't work for you.  Good thing I didn't listen to them.

If you have allergies that affect your eyes, Sjogren's will make things worse.  Your eyes are so dry that when you step into pollen land, your eye doesn't have the moisture to wash things away.  Use OTC moisturizing drops frequently, as needed.  Stay inside when the pollen load is high.

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The above link is for new meds that might be very promising for us.  I do not take meds, except Restasis, as they have side effects. But this link describes research on a new drug targeted for lupus but at the end of the article it lists Sjogren's as another possible disease it may be useful in treating.  I'm all for drugs that modulate the immune system without screwing anything else up!

I forgot to add that taking 2,000 mg per day of Omega 3 fish oil with meals will help with inflammation.  I split dose mine and take over 2 meals.

 

[BlackShoesBlackSocks]

Thanks so much.

 

Yep, l always blamed allergies and my left eye as like an ''allergy hangover''. It took me way too long to understand that unless something is damaged, it shouldnt hang around that way when l'm reacting to anything or after an attack.

 

For me it's primarily one eye which might be weird but IDK. My left eye is mostly a grayinh color now where the whites are, with what looks to me like ''staining'' or a discoloration. l asked about that, actually like 5 years ago. the doc did say dry eye but ''a little dry eye''.

 

The pain is really  my main symptom. l don't think l would have figured out it could even be dry eye, the left eye does water  and overcompensate though but without googling l never would have thought '''Oh, my eye feels dry''. The eye itself looks  kind of  odd and almost bigger than the seemingly normal one  and the damn foreign body sensation. They burn but l have blamed ingredients in sunscreen for that, sometimes it is! But maybe it just worsens it because l was never sensitive to most skincare.

 

Not sure if it's a weird case or what but l will take the dry eye treatment route.

The doc said headaches and allergies and also the allergy meds have probably compounded it. And k had a pressure test  that was normal, very glad because l always felt like the pain was pressure directly on my eyeball.

 

 She did the eye stain  and numbing drops, and dilation and flashed lights deep in  and by the time it was all in l really felt like my eyeball got rolled around in there so l'm glad to know there's nothing wrong with with it.

But yes, because my right eye feels fine it can work for the left one. when covered l can't really read or see well  out of the dry one anymore so l was getting worried about leaving that untreated. sometimes a bit of double vision if overworked, maybe the imbalance.

 

And oh, antihistamine drops definitely do make it worse. l went to the UC once and they rx'd zaditor, l used one drop and put it aside. lf l have to l'll take something systemic or maybe go back on Flonase but indeed, my eyes  get crusted shot with the drops.

 

Adding fish oil back in, too.

 

If neg on a test l wouln't be utterly shocked:P  l would like to know if l have a reason for thinking being gluten free might help me, l did notice my vision ''ease up'' for lack of better explanation. Things seem to be in closer focus now, in my good eye, anyway, and even the bad one  has probably improved. sometimes l almost had a tunnel vision thing pre gluten-free.

 

But if positive at  least l can just present the results to a doc and know for myself that l should continue gluten free.

[BlackShoesBlackSocks]

Btw l dont think l had the ''Schirmer's Test'' unless that was the machine with flashing lights help up to the eye? No ''mm'' result or anything, but they called that an eye pressure test. No puff test now.

[Gemini]

  On 9/28/2017 at 5:10 PM, BlackShoesBlackSocks said:

Btw l dont think l had the ''Schirmer's Test'' unless that was the machine with flashing lights help up to the eye? No ''mm'' result or anything, but they called that an eye pressure test. No puff test now.

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The pressure test is for glaucoma.  Mine is perfect, which is good because I have enough problems. 

Do you have dry mouth also?  That is usually the hallmark of Sjogren's.....both dry eye and mouth.  Dental problems go hand in hand with Sjogren's because of the dryness issue.

My left eye is the worse one also.  My right eye is dry but the left one is really dry.  I do use Zaditor for allergy drops but I can tolerate it because I have been on Restasis for a long time.  Using systemic meds may increase your dry eye but you have to find something that works.  Have you ever tried allergy shots?  They worked really well for me but the treatment does not last a lifetime. 

The Schirmer test was not something I was willing to do but I didn't need to because my antibodies came back positive.  I knew I had Sjogren's anyway due to my severe symptoms. They stick what looks like litmus paper strips in your eye to measure tear production. I don't think so, thank you!  I have enough problems without them sticking things in my eye.  

[BlackShoesBlackSocks]

Oh my goodness, yeah, definitely did not have that. l thought it was just a   basic dry eye test.

 

l do but no dental problems or even cavities, my teeth have been my rock. My mouth is gross TBH so l'm not sure how, l'm drinking more water lately.

 

l'm unfortunately a smoker (again) after being a non smoker for years. well, at least a social smoker who never bought a pack since around 2006. So l always feel like everything going on in my mouth is gross and my fault  But l will say l had a nasty layer of nastiness on my teeth quite often before l picked it back up.

 

l'm just wishing l would have done celiac testing done before going gluten free  and that Sjohren's could explain some of the crossover, l guess.

l know l'm feeling better but thinking about retesing and eating gluten again is getting stressful, on the one hand l want to just know as soon as possible and on the other, really don't want to do the gluten challenge and doctors again.

 

l did  also find some cheaper testing options though (celiac/gluten intolerance) with walkin labs.

Maybe silly but l am anxious about being gluten-free for the holidays and gatherings and not having some proof, just for myself.

 

lm also going to ask again about shots, l was referred at one point but didnt follow   through. Now l see l really dont want to be and probably shouldnt be even on claritin to totally let the  dry eye  situation correct itself so l'm more serious about that.

[knitty kitty]

I have had problems with my eyes, too.  They started out as dry eye.  My left eye is more affected.  The pupil doesn't constrict and dilate properly any more and has left me legally blind.

After being examined at the Helen Kellar Institute, what I learned is vitamin D, vitamin A,  vitamin B12, and vitamin B2 (riboflavin), omega 3's and iron deficiencies can all play a part in eye problems.  

Please get checked for vitamin and mineral deficiencies.  Don't settle for medications to alleviate the symptoms. Get to the root of the problem!  Celiac Disease causes malabsorption which results in malnutrition and vitamin and mineral deficiencies.

 Check with your doctor about taking a good B Complex supplement.  The eight B vitamins all work together and need to be supplemented together.  Studies are finding that vitamin status in blood work may not properly reflect the vitamin status in the body's tissues.  B vitamins are water soluble and need to be replenished every day.  

Poster boy is correct in saying vitamin D 3 is the best form to take.  D3 is the natural form of vitamin D. D2 is the synthetic form which is not as readily absorbed by the body.  I feel much better when my vitamin D level is in the eighties.  Thirty or forty is too low.  

Anemia caused by iron deficiency or B12 or folate (B9) deficiencies can also manifest with eye problems.  

Please don't settle for pills and eye drops.  Find and correct the nutritional deficiencies first.  Your body can't work right if you don't give it the nutritional building blocks it needs.  

I hope this will help you avoid the consequences of nutritional deficiencies like I've suffered.  

Kitty

 

 

[Gemini]

  On 9/28/2017 at 7:34 PM, knitty kitty said:

I have had problems with my eyes, too.  They started out as dry eye.  My left eye is more affected.  The pupil doesn't constrict and dilate properly any more and has left me legally blind.

After being examined at the Helen Kellar Institute, what I learned is vitamin D, vitamin A,  vitamin B12, and vitamin B2 (riboflavin), omega 3's and iron deficiencies can all play a part in eye problems.  

Please get checked for vitamin and mineral deficiencies.  Don't settle for medications to alleviate the symptoms. Get to the root of the problem!  Celiac Disease causes malabsorption which results in malnutrition and vitamin and mineral deficiencies.

 Check with your doctor about taking a good B Complex supplement.  The eight B vitamins all work together and need to be supplemented together.  Studies are finding that vitamin status in blood work may not properly reflect the vitamin status in the body's tissues.  B vitamins are water soluble and need to be replenished every day.  

Poster boy is correct in saying vitamin D 3 is the best form to take.  D3 is the natural form of vitamin D. D2 is the synthetic form which is not as readily absorbed by the body.  I feel much better when my vitamin D level is in the eighties.  Thirty or forty is too low.  

Anemia caused by iron deficiency or B12 or folate (B9) deficiencies can also manifest with eye problems.  

Please don't settle for pills and eye drops.  Find and correct the nutritional deficiencies first.  Your body can't work right if you don't give it the nutritional building blocks it needs.  

I hope this will help you avoid the consequences of nutritional deficiencies like I've suffered.  

Kitty

 

 

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While this is very good advice,  taking vitamin supplements won't be much help if you have Sjogren's.  I take all the vitamins you mentioned just because I have Celiac and very few Celiac's can get all their nutrient needs from food alone.  Nothing helped much until I started using Restasis.  It's the only RX I take and the benefits have been noticeable.  If I don't use it, I may lose eye sight down the road because the severe dry eye you get from Sjogren's is worse than you can imagine.  Sometimes you have no choice but to use meds, unfortunately. But I do agree that checking basic vitamin levels is a must with systemic problems.

Where do you live that you can get your Vitamin D into the 80's?  Florida?  Here in New England, most people never get to that number.  It is common to see people here with D levels in their 30's because we are so far north.  I have never been able to get mine over 50 but I now take 5,000 IU per day so we will see what happens with that.  I do not get much sun but that is OK because I am older and sun really damages your skin. A real Catch 22!

[knitty kitty]

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Yes, I agree taking vitamins is a must with systemic problems.  My ophthalmologist said that during fetal development, the cells of the eyes arise out of the same type of cells that make up the digestive tract.  Makes sense to give the best nutrition to both.

That first article describes a case study of pellagra and SS.  My SS started when I had pellagra.

I've supplemented my vitamin D to get it in the eighties.  When I had pellagra (and vitamin D deficiency), my skin was photosensitive.  I developed brown patches on my face,  hands and forearms, and feet.  This is called the gloves and boots of pellagra. I also had Casal's necklace (a rash around my neck).  When I went in the sun, I would get blisters, rashes, and scales and more and darker brown patches.  With niacin to correct the deficiency, the rash part has gone away and the discoloration has faded, but if I go out in the sun, it darkens again.  So I stay out of the sun and supplement vitamin D.  I read a study that measured the vitamin D levels of Pacific islanders living traditional lifestyle (fishing, farming) so they had access to plenty of sunshine.  They found that most had levels between 78 and 108.  (Cant find that link right now, sorry.)  

Most of the Recommended Daily Allowance (RDA) guidelines were done in the forties to ensure the troops of WWII stayed healthy.  With the discovery of synthetic drugs, vitamin studies fell by the wayside.  Many people believe those old RDA's are set too low.  They denote the minimum levels to prevent deficiency diseases known at that time.  With soils depleted of minerals and widely used pesticides, the nutrients in our crops have decreased.  And food processing strips more nutrients out.  So, eating fresh unprocessed foods are best, but supplementation may be necessary sometimes. 

I know everyone is different, and responds differently, and I'm not a doctor, but do give a thought to vitamins and correcting nutritional deficiencies before just blindly taking prescription after prescription like I did.  My doctors absolutely missed the deficiency symptoms.  They hadn't ever seen a demented pellagrous patient.  It was scary. And, no, I don't have to do eye drops any more.

 I hope my story helps so others don't suffer unnecessarily.    

P.S.  Cigarette smoking has some protective effects on Celiacs.  Interesting you started again....

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[Gemini]

Knitty kitty...have you been diagnosed with Sjogren's?  There are many factors that come into play with severity of symptoms besides vitamin deficiencies.  If you are pre-menopausal, then you may have a better outcome with severity of symptoms with regards to dryness.  Hormones play a huge role in that. How long you went undiagnosed with it is also something to consider because the longer you go, the more collateral damage you will have that cannot be reversed by vitamins alone.  I agree that doing a vitamin panel is mandatory and correcting deficiencies paramount to better health but even after I corrected my deficiencies, which were severe, there was improvement in my eyes but not enough to discontinue using Restasis. 

I was an older diagnosed Celiac who had in your face symptoms for 30 years so I pretty much have come to the conclusion I will be using these eye drops for the rest of my life........which isn't a bad thing because I value my eye sight.  I don't consider this as bad as swallowing pills because the studies they have done with Restasis use have shown that very little of it actually gets into and stays in your system, even with repeated use.  It's Cyclosporine and that is easily measured.  I have had zero side effects from it, which is great.  I just wanted people to know that if they have Sjogren's and cannot find relief using other methods that have been mentioned, then don't be afraid to try Restasis.  It has made a huge difference in my eyes, whereas nothing else worked.  I have 4 AI diseases in total so my situation might be different than someone else who only has Sjogren's.

Lastly, it doesn't matter whether you have primary or secondary Sjogren's....Sjogren's is Sjogren's and I don't know why the AMA keeps making a differentiation between the 2. You either have it alone (primary) or with other AI disease (secondary).  Symptoms and treatment are the same, which I have reminded some doctors about.  I know you did not say that but the articles kept referring to primary Sjogren's.  As for the Vitamin D dosing requirements, I totally agree that they are WAY TOO LOW.  I take 5,000 IU daily...or at least 5 days per week because I sometimes forget a day or 2 and some people freak out over the dosing.  As long as you check your levels, dosing can go pretty high to get that number up. If you live in the Northeast of the US, you're going to have to dose high.

Glad you've had resolution to your problems, which is amazing since doctors never look into food and malnutrition.  Look how many people on here cannot get their docs to do a vitamin panel!