Hi Everyone,
First time posting here. I'm trying to figure out if all of my symptoms could be explained by Sjogren's. I was tested for Sjogren's over a year ago via a blood test and the antibodies came up negative, however my new Optometrist gave me an order for the SJO test, which is supposed to be better at detecting Sjogrens earlier.
Anyway, here is what is happening with me. Some of these sound like classic Sjogren's symptoms but others I can't find listed anywhere so it would be really helpful to me if someone else can tell me if Sjogren's can cause these problems too. I've been suffering with problems for nearly three years now and I am desperate for an answer and some relief.
- Dry Eyes - My eyes are extremely dry, no tear production as well as issues with the oils in my eyes. My vision is very blurry at times. I've tried numerous treatments to help with my dry eyes, including Steroid drops, Restasis (allergic to it), Xiidra, TrueTear and even some more out there treatments like Regener Eyes amniotic fluid eye drops and nothing has worked.
- Excessive Thirst - I go through a bottle of water an hour.
- Dry mouth / lips - This has really become noticeable in the past few weeks only, but I have had a white tongue for the past couple of years. Doctors say it is not thrush.
- Gastrointestinal pain / bloating - I have pain and bloating in my stomach. I tested positive for Celiac disease, but nearly 8 months of a strict gluten free diet has not helped. I was also tested for SIBO, which was negative, and my doctor also put me on a trial course of Doxycycline for SIBO (says the test results are not always accurate) and that did not help at all either.
- Poop problems - My poop is sometimes yellowish and usually has air bubbles that rise to the surface of it. I haven't been able to find out any info about why the poop would have air bubbles so if anyone else has this symptom I would love more info.
- Stomach lump - I've got a stomach lump that the doctors haven't been able to find despite a CT, colonoscopy and endoscopy. Can Sjogren's cause lumps or masses? Mine is on my left side below my ribs.
Does all of this sound like Sjogren's? I'm anxiously waiting to hear back on my SJO blood test but it can take up to two weeks to get the results back.
Thanks!
Hi
Sorry to hear what you are going through.
Sjo test will identify about 70% early sjogren.
Do unsimulated whole salivary flow test at home once at 7.30am and then at 11am. Just Google and you will find how to do this at home.
Dry mouth can also be caused by depression, so meet a psychiatrist, if they identify depression or anxiety they will be able to solve your dry mouth.
All the best.
If it were me, I would check for Diabetes first. Since my Sjogren's does not show up in my blood, I was diagnosed on symptoms after 7 years of tests. Good luck in finding answers in your journey. Sjogren's is typically a diagnosis of elimination of other diseases.
Hello - So sorry for the pain and stress you are going through with all of this. It is so puzzling. I agree with another poster about checking you out for Diabetes or pre-Diabetes - it could be Type I (autoimmune caused) or Type II. Also, regarding the Celiac, I 'm sure you already know this, but you can attempt to be "gluten free" and not really be gluten free - there are inflammatory properties in many of the so-called gluten free foods, like gluten free oats etc. Please find out about this strict, 100% gluten-free diet if you haven't tried as perhaps your stomach pain and other issues are being inflamed by this. Folks I know with Celiac have told me the only way they got TRUE relief and pain free living is by going to the extreme of no gluten - meaning no oats etc. See https://www.beyondceliac.org/gluten-free-diet/overview/. Lastly, to answer your other question I am not aware of Sjogren's causing lumps of any kind, but I may be wrong. Anyway, best of luck to you and hang in there!
Quote from: BMR777 on July 03, 2018, 06:53:03 PM
**Hope this style doesn't make you nuts....but i'm going to tell you what I think (and relate to my experience) next to your ***
Optometrist gave me order for the SJO test, which is supposed to be better at detecting Sjogrens earlier. //AFTER I was diagnosed a new test for eye doctor use (not exclusively anymore) which I have no experience----BUT...there are lots of messages about it on this site. I don't recall the name. SOMEONE will see this and remember. Several people were dxed after this test and being negative for many years. //
** Some of these sound like classic Sjogren's symptoms but if someone else can tell me if Sjogren's can cause these problems too. I've been suffering with problems for nearly three years now and I am desperate for an answer and some relief.**
**- My eyes are extremely dry, no tear production //You would think I would have realized this. My dad died in 1990. Not a tear shed. // **I've tried numerous treatments to help with my dry eyes, including Steroid drops, ** // My eye doctor told me 25 years before dx to use preservative free eye drop. By the time I was dxed, I had abrasions ..no tears. Was told my lacrimals had atrophied. // ** Restasis (allergic to it) ** // saved my eye surface...after 4 years of use, nighttime dose still burns. I trust my ophthal who tells me it has worked a miracle on eye surface.
** ** //...YES. this is what finally made me start asking questions. I had /have sialadenitis. It was painful and aggravating..and tended to by an ENT who never once mentioned SjS. He was almost as old as I am and looking back, understandable he never got it!//
**- Dry mouth / lips -, but I have had a white tongue for the past couple of years. Doctors say it is not thrush.[/li
** I treated this phenomenon by taking a clean washcloth, wiping the roof of my "cottage cheese" mouth, and tongue. Hurt as I had burning tongue ..over a year before dx. I lost about 30 pounds, would have lost more but puddings ,ice creams, yogurts, cream soups soothed tongue.//
**- Gastrointestinal pain / bloating - I have pain in stomach.
** //I've had mystery gastro stuff for decades. Years before any other dry stuffs started. I've had 3 gastros and no one has diagnosed me. My current one has now assured me no more colonoscopies ever again. They have all agreed I do NOT have Crohn's, IBD/IBS, colitis (ulcerative), or ANYTHING serious. I have decided it has to do with the absence, imbalance of saliva. Hacky coughs, choking, before dx can be explained by lack of proper coating along one's esophagus. I can't recall, but can be searched easily, to learn how much saliva a normal person produces each day. I have 5 of my 6 salivary glands atrophied.//
**Does all of this sound like Sjogren's? .** // YES..to me it does. The test does take about a week + Remember, there is seronegative.
You mentioned you had used prednisone eyedrops. My ophthal gave it to me when Rxing the Restasis. I used it 10 minutes before using the Restasis for 1 month. It still burned ..but...at that time he hadn't told me in detail how bad my eye coverings were. The test the optometrist is a good test from what I've read here. Then of course, you know about the lip biopsy. However, I was a few months short of my 72nd b'day before dx. You DON'T want to wait that long.
And...you have found doctors who will give you meds for your symptoms. A dx is a dx. The medicines for dry mouth and eyes, etc will make you feel a bit more normal. And then, it can take a year for your body to adjust to these meds..and the changes in a compromised oral cavity. A chronic dry mouth can take its toll on your teeth. I know. It did mine. Also, about two years after dx my dentist's dental asst told me I had fungus in the corners of my mouth. I LOL...I use an aloe balm on my dry lips...can't use anything but that....and she said that would NEVER heal the fungus. She was right. There is an Rx for that....and likely where the fungus in my mouth came from. No one has ever explained why "washing" the inside of my mouth was successful. Don't get me wrong...within a few days it was back! Not only did I live with that, I worked part time at the time...and would have to go to work! Seems unbelievable now.
If your question was deleted, I have no first hand info. Others might. Good luck...you are in the right place. Lots of understanding, information, and support here. We've all been there. Don't forget---you CAN be seronegative. You can be diagnosed by symptoms. Remember to get meds before you get dx. You comfort level will go up.
Good luck dear,
Courtenay
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Thanks everyone for posting!
Those mentioning about diabetes, I was diagnosed with diabetes / pre-diabetes a couple of years ago. My doctor said it was diabetes, but my highest ever A1C was 6.3 and after adjusting my diet all of my further A1Cs were in the area of 5.3. Also, I had checked my sugars for a month and NEVER had one go over the normal range. So I wonder if I even have diabetes and if I just had pre-diabetes.
Oh, and after changing my diet I lost over 120 LBS also, yet symptoms persist. I even cut out all sugar from my diet for months and it made no difference whatsoever, so the likelyhood this is diabetes for me seems very very slim.
As far as the celiac, I am on a strict gluten free diet and I don't eat oats either. My doctor said based on my bloodwork and celiac antibodies I am sticking to the strict gluten free diet.