Anyone have Sjogren's in this forum?

tobi · Joined: 09 May 2005 Posts: 23

Hi, I have been GF for over 2 years and doing quite well. Newly diagnosed with Sjogren's syndrome and just wondered if anyone else with Celiac had Sjogren's. I do need to find GF sugar free lemon drops to keep my mouth moist.

Always great to read and hear about CD from other people.

Jan

aklap · Joined: 02 Oct 2004 Posts: 8607 Location: WI, USA

Hi Jan,

Sorry to hear about your new diagnosis (dx) Sad

- but glad to hear you've been doing well otherwise Smile

.

I do not have it...but it is not uncommon for Celiacs to have Sjogren's - due to the auto-immune connection. It is more common for women to have it than men.

I have posting small amounts of info on Sjogren's - maybe in the Diagnostic Forum? Or do a search on it which can be found above.
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“We cannot all do great things, but we can do small things with great love.” Mother Teresa

PrtPaty · Joined: 09 Dec 2004 Posts: 65 Location: Oregon

Hi Jan,

It seems like there have been some posts on this site in the past of people who have Sjogrens. I have most of the symptoms and at one point mentioned it to my optometrist because I have had such dry eyes for several years. So, I guess I don't have it officially, but I had to quit wearing contacts several years ago-boo hoo, and I've had punctum plugs in my eyes for about 5 years now. Going on thyroid medication helped it, but I still have to take eye drops 4+ times a day. Heating and AC are bad as is reading or computing too long. I'm sorry you have trouble too. How has it been for you?

Patty

Yvonne · Joined: 18 Apr 2005 Posts: 29

Hi Jan & Patty,

I too had to give up wearing contact lenses. I am devastated! I have such bad eyesight that I have to wear glasses 24/7 now. Worse things I know! This all happened over the last 3 years but I only found out about my gluten problem 3 months ago.

I have very dry eyes, can't open them when I wake up in the morning. I also have a small hard lump in my salivary gland in my throat.

I haven't officially been diagnosed with Sjogren's but I think its pretty clear I have it.

I also read somewhere that this may contribute to my lifelong chronic constipation. Apparently the walls of the bowel and intestine also dry out.

Its more of an inconvenience than anything else I think.

Always great to know we're not alone!!

Have a great weekend.

Yvonne
(South Africa)

tobi · Joined: 09 May 2005 Posts: 23

Thanks for all the responses. It just feels nice to hear from others with the same problem, just like Celiac disease. I suggested Sjogren's to my PCP and he just shrugged his shoulders. Then I mentioned it to the opthamologist and he said I could have Sjogren's. I'm now on a health plan that does not require a referral so I saw a rheumatologist and she diagnosed it with blood work and my symptoms.

The dry eye problem has been ongoing for about 4 years. I used to get eye infections from rubbing my eyes, tried all kinds of moisture drops, then the plugs (which worked for a little while) and now I'm on Restasis and that seems to help. I do use moistening drops all day long though. I also have floaters and all in all it is annoying. I need to check when I came off Estrogen because there may be a connection.

My saliva is diminished so I watch dental care closely. Awaiting a new electric toothbrush. Has anyone tried the Biotene products? I also want GF SUGAR free lemon drops if anyone knows about those.

Another symptom I have is difficulty swallowing which I am positive is from Sjogren's. I have had many palpable lymph nodes and even had one biopsied and all they said was no lymphoma. Lymphoma is a concern now that I have both Celiac and Sjogren's.

I do not hesitate to send literature to my doctor on all of these things.

Thanks for listening, Jan

PrtPaty · Joined: 09 Dec 2004 Posts: 65 Location: Oregon

Hi,

Good day to all. Wow, it is so intersting about everything that one can learn just from sharing with everyone and reading their posts. It's also nice to be able to have someone else who can identify with you.

I know what you mean by not being able to open your eyes in the morning. At one time earlier this year, I was so bad like that. It kind of scared me, and I thought that my cornea's were going to rip off if I opened my eyes without using drops first. It's not as bad now, but I still have to use drops first thing I wake up. After that I grab the glasses.I have -750 eyesight. What's yours? I also have a lot of floaters too. Do you know anything about them or a good website to look at? About all I've read is that I'm more at risk for a detatched retina. Sometimes I think there is a fly in the room but it's just a floater. ha! If we get bored we can always amuse ourselves by trying to chase them.

Swallowing difficulty is a main symptom of low thyroid too as is dryness. Just thought I'd mention that going on thyroid helped me a good measure. At least now I can read again, watch TV and use computer-within reason.

Patty

tobi · Joined: 09 May 2005 Posts: 23

My floaters happened before the dryness. The Dr. said it was the vitreous fluid folding over on itself that cause the floaters.The big ones have gone away but I still think there is a fly in my coffee cup most days!

I'm off for a week in the Northeast Kingdom of Vermont for peace and quiet on Echo Lake. Awesome place. So great to hear from you all. I'll check in when I get back.

Jan

bcouture · Joined: 02 Nov 2004 Posts: 28 Location: E.H. Connecticut

Sorry about your problem with Sjogren's... what next huh Embarassed

My biggest problem is dry mouth... swallowing foods and always concerned about bad breath... One thing that has helped in this area is rinsing frequently with "biotene mouthwash", it is alchol-free; also I keep "tic-tac's" in my purse at all times. (I know the sugar thing!!)

Again eyes are a problem... but eye drops help that and the humidity in the summer helps but come winter with all the hot air the dryness is a greater problem. I don't have a partner so dryness in other areas Wink

isn't a problem, but could be to others.

Good luck, sorry about the problem but things could be worse.

Barbara

tobi · Joined: 09 May 2005 Posts: 23

Hi Barbara, Thanks for your reply. What does biotene taste like? I dislike so many tastes (just one of my quirks). I am also hunting for the GF sugar free lemon drops. I have been using the CVS brand which is 15 calories. Other sugar free types have even more calories. Odd!!!

You know, life gives us little detours and we just have to adjust. I believe in learning all I can about these things.

Thanks, Jan

bcouture · Joined: 02 Nov 2004 Posts: 28 Location: E.H. Connecticut

Hi Tobi,

tobi · Joined: 09 May 2005 Posts: 23

Thank you Barbara. I'm going to try Biotene. We're close to a CVS. Yes, this forum is awesome and SOOOO helpful. Tobi/Jan

Marilyn · Joined: 07 Jul 2005 Posts: 8

Janet · Joined: 06 Jan 2006 Posts: 3

I was diagnosed with celiac in June and after I read the Gluten Free Bible I asked to be tested for Sjogren's and it was very positive. I always wonder if the delay in my diagnosis with celiac (9 years) contriuted to my developing sjogren's (I've had symptoms for 2 years but doctors always dismissed them as side effects of allergy meds. and my young age (26) likely made people doubt that). Does anyone else wonder that or have more information on that topic?

On the topic of gluten free things to keep the mouth moist, I love Hall's sugar free menthol cough drops (MUST be sugar free). Those help me a lot, since I can't use sugarless Trident at work since I am a teacher!

I suffer from oral thrush a lot, does anyone else? I just started using mycelex losenges (prescription), which seem to be helping, and those are gluten free.

Also, my rhumetologist is beginning me on Plaquenil to try and put the sjogren's into remission. Does anyone else have experience with this treatment? From what I have read, I am nervous about the side effects, but my doctor says the risk of sjogren's being so aggressive and active is higher than the medication's side effects. I would love to connect with someone who has experience with this medication.

I would love to connect with some other sjogren's sufferers, so please write back!

Janet

MEODell70 · Joined: 27 Apr 2006 Posts: 11 Location: Central Coast, CA

I've taken Plaquenil for 7 years with no complaints. I have Lupus. I've never had any side effects whatsoever. My opthomologist informs me every year that an extremely few people have eye problems from taking the medication. The studies that produced the side effects used an earlier version of the medication and at much higher doses than those used to treat our types of diseases. Of course the problems do still occur and I know someone who had the eye problems. She also has everything under the sun and doesn't tolerate medication very well in general. I'm sure there will be no worries for you Very Happy

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