Sjogren's and Celiac

[mbr22m]

Hi all,

I'm having a bad week.. I was recently just diagnosed with yet another autoimmune - Sjogren's syndrome . I'm reaching out to see if anyone else on this forum also has Sjogren's and can share their experiences. My  PCP diagnosed it with a blood test (negative SSA antibodies, positive SSB, negative ANA) and referred me to a rheumatologist. Unfortunately, I have to wait a couple of months to see the rheumatologist, but I'm getting so anxious wondering what to expect. I've read a lot of different information on the internet when researching it (I really need to stop with Googling it as it really puts me in a panic). Do they put you on immunosuppressives or DMAR drugs, or does it depend on the severity? Can it be managed with OTC meds? I'd prefer not to go on any immunosuppresive type meds. All of my other bloodwork came back normal (CBC, CMP, sed rate, CRP and other Lupus tests).

Thanks to anyone for their help/support 

[Gemini]

I am sorry to hear you have another AI problem.  I also have Sjogren's and have known for years but it wasn't official to the doctors until about 10 years ago up when they did the blood work.  I had positive everything. Maybe I can try to alleviate your fears a bit........

I find Sjogren's the worst of my 4 AI problems but it can be managed well with the proper care.  I do not mean immunosuppressive drugs either. My symptoms are severe but it will be a cold day in hell before I take that crap. Really...the only way I would is if they told me I was going to die without it. That's my criteria.    For this reason I've never agreed to see a Rheumy. They tend to push meds....hard. I have my PCP monitor whatever she wants but that is as far as I am willing to take it.  I tell you this because I don't want you to be pressured into taking serious meds without trying other things first.

For symptom relief.......

-Use Biotene mouthwash which is for dry mouth.  It works really well and has a really nice minty flavor. Not that harsh minty flavor other mouthwashes have but a non-burning, no after taste flavor. 

-See your dentist for cleanings every 3 months......important!  You are much more susceptible to dental decay with Sjogren's so you have to have your teeth cleaned more often and follow stringent dental care like flossing every day and brushing after every meal.

-Make sure any candy you use to hydrate, like hard candy or chewing gum, is sugar free. These are very useful in helping to keep your mouth more comfortable by stimulating saliva production.

-For dry eyes, if they are really bothering you with little relief from OTC eyedrops, then ask about Restasis Rx eyedrops.  It doesn't work for everyone but it made a huge difference for me. Then, follow up with OTC hydrating drops as needed.

-Make sure your gluten-free diet is strict because if you heal well from Celiac, then this will help fight inflammation systemically and will in turn reduce inflammation in other AI problems you have.  My symptoms, although bothersome at times, have calmed down since being gluten-free for a long time. I was a mess and my eyes were really, really bad right before I got the Celiac diagnosis. 

Last piece of advice?  DO NOT google Sjogren's and read too deeply into what the potential is because yes, it will scare the crap out of you.    You have to remember that not everyone ends up with the worse problems from it.  Maybe the ones that do have Celiac and don't know it so they progress worse.  Try as hard as you can to keep a more positive outlook on things and work to reduce inflammation. Keep the focus on getting better.  I would also advise talking a good Omega 3 and 6 supplement as that helps to reduce inflammation for those with AI problems. They recommend between 2,000-4,000 IU per day for AI challenged people like us.  This info all from my PCP because she is realizing I am stubborn and would rather use more natural methods of dealing with the problems.  I have some more supplements she recommends for inflammation that she claims have helped many of her patients with arthritis so if you want the names of those, I can give them to you. I am going to be buying some myself and giving them a whirl.

I know this is upsetting but you will be OK.  I do admit Sjogren's can be difficult because it's your salivary and lacrimal glands that are involved but it can be managed without resorting to the big guns.  You will learn as time goes on what works best for you.  I hope this helps to alleviate some of your fears!

 

 

 

 

 

 

 

[Hummingbird-Hill]

I too have Sjogrens and Celiac.  I was diagnosed 27 years ago with celiac and 20 years ago with Sjogrens.  Celiac is the easier disease because it is up to me to keep healthy. With all the food available it is easy now.  Sjogrens is a little bit more difficult.  I am on plaquenile and it helps tremendously with the aches and pains.  I feel better in the summer when there is warmth and sunshine.  Winters I feel much worse.  My teeth are all capped.  And when my jaw aches, I take OTC pain meds.  That is about all I do.  I have learned it goes into remission in the summer, so I look forward to this time of the year.  My eyes are dry, my showers take care of this for me.  My mouth is always dry, so I have water on hand at all times.  I have to be very careful eating as I have difficulty swallowing without inhaling and choking.  I'm very careful.  

I do have to say, it has gotten much easier.  I feel much better. I am coping much better.  It does get better.  Once you are on meds, you will get better.  And you will even thrive.  Hang in there.

[mbr22m]

Thank you, Gemini and Hummingbird-Hill. I'm with Gemini on the immunosuppressives. I am scared I'm going to go into the Rhuemy and she'll start pushing these drugs on me. I don't have any pain, except for pain in my hip from SI joint problems and lower back pain from mild degeneration. My jaw also occasionally hurts. I try and control hip and back pain with massages from my PT and adjustments from Chiro. I've watched my mother's health and quality of life slowly decline from the extreme amount of meds she's on (fentanyl, valium, seraquil, gabapentin, lyrica, zopoderm, anti-depressants), so I'm very anti-drug. She's currently in kidney failure and has autoimmune hepatitis. I really do not want to take the immuno. drugs unless it is life threatening. My PCP told me to take tumeric, which I was already taking. I didn't even want to go to the Rheumy, but my PCP thought it would be advisable to go.

I've had the symptoms of SS for a while now, but just never put it all together (extreme thirst, dry itchy throat, chest tightness, constant cough, dry eyes). I attributed it all to allergies or my GERD. I think I've had this for a long time. Most of the symptoms started shortly after my celiac diagnosis 10 years ago.

Thank you both for your advice and support. It feels better to know I'm not alone and it is manageable

[Gemini]

My experience watching other people load up on meds has never been a good one. They all end up having major problems from drug interactions or side effects from these harsh drugs.  I think when you are younger you may be able to tolerate them but as you age, that's when problems arise.  If it is a matter of life and death, that's a different story.  I have absolutely no joint pain from Sjogren's and all the grief is with my eyes and mouth so I choose to treat the symptoms as mentioned above.

I am so sorry about your mother's problems.  That must be very hard to deal with.  Is your mother Celiac also?

You can always go to the Rheumy just to shut your doctor up about it but you are under no obligation to take any meds you do not want to.  Something to remember.......  

 

[mbr22m]

Yes,  my mom suffers a lot of bad side effects from her meds, which scares me a lot.  I don't know why docs have her on so many but she is very ill and doesn't take good care of herself  (she actually has 3 autoimmunes; lupus, autoimmune hepatitis,  hashimotos). I am pretty sure she has celiac as she's had digestive and neurological issues for a very long time.  She won't go get tested and won't eat gluten free   it is very frustrating. 

I'm dragging my husband with me to the rheumatologist because I'm not very assertive around doctors. . So hopefully if all is well,  I'll be able to stand my ground 

Thanks again for all your great advice

[Emilybronte30]

I'm so sorry to hear you're having tough time. Have you looked into trying the AIP diet? I don't personally know of anyone that has had success with it with SS, but there's a support group on Facebook, that might be a good resource to check.  I have celiac and high thyroid antibodies (though no measurable symptoms by western medicine standards). I was determine to fight to save my thyroid, and the only course I found was a very restrictive diet. I'm definitely feeling better, and hope to get my antibody levels checked soon. Hope and pray you stay healthy!

[mbr22m]

On 3/21/2016 at 6:14 PM, Emilybronte30 said:

I'm so sorry to hear you're having tough time. Have you looked into trying the AIP diet? I don't personally know of anyone that has had success with it with SS, but there's a support group on Facebook, that might be a good resource to check.  I have celiac and high thyroid antibodies (though no measurable symptoms by western medicine standards). I was determine to fight to save my thyroid, and the only course I found was a very restrictive diet. I'm definitely feeling better, and hope to get my antibody levels checked soon. Hope and pray you stay healthy!

Thanks Emily!  I'll look into it.  I've read about it before. I have a cookbook with some AIP friendly recipes. 

[mbr22m]

One more question I had for you all. . Have you had any kidney stones and do you think they could be associated with Sjogrens? My last xray of my back showed a small, 3mm possible kidney stone.  This was pre-sjogrens diagnosis,  so now I'm wondering if they're related. It hasn't given me any serious pain. . Yet. . 

[Gemini]

1 hour ago, mbr22m said:

One more question I had for you all. . Have you had any kidney stones and do you think they could be associated with Sjogrens? My last xray of my back showed a small, 3mm possible kidney stone.  This was pre-sjogrens diagnosis,  so now I'm wondering if they're related. It hasn't given me any serious pain. . Yet. . 

They are not associated with Sjogren's that I know of but they associated with Celiac.  I have a good article bookmarked on my work computer I can post tomorrow.  I am not at work today. It explains why they happen with Celiac Disease.  I think being gluten free long term will help with that.

[mbr22m]

Ok,  thanks!  I can't seem to keep up with what's associated with what anymore. . 

[Gemini]

Open Original Shared Link

This is an older article but I thought it contained some very interesting information on kidney stones. 

[mbr22m]

Hmm, that's interesting.  I eat a lot of high oxalate foods too,  so that may explain it. Thanks! I should probably start taking a calcium supplement with my D3.

[Renaye]

I am on plaquenil also. It is the first thing that they put you on if your symptoms are mild.  Plaquenil has worked wonders for me but the only risk are eye problems which you would need to  have an ophthalmologist follow you.  I don't have antibodies but have a positive ANA and dry symptoms which are much better since treatment.  The key is finding a good doctor.  Join sjogren's world website.  There are many nice people there and have great advice.

[mbr22m]

Thanks Renaye. I have vitreous detachment so I'll have to check with my ophthalmologist to see if it's ok to go on.  Does the Plaquenil treat the symptoms,  or stop then from progressing, or both? Do you have to get frequent lab work if you're on it?

[Renaye]

Plaquenil helps my fatigue and joint pain.  It is also supposed to slow down the progression.  I see the rhuemmy every 6 months and get blood work every time.  I am doing well and my doctor thinks my sicca symptoms are in remission due to the gluten-free diet.  He plans on seeing me yearly after this next visit since I am stable. 

[mbr22m]

Thanks Renaye! Just saw your response now.