Willgetthruthis

On 5/9/2016 at 9:38 AM, Gemini said:

You probably don't know any others with Sjogren's because doctors suck so badly at diagnosing it!    Symptoms that stem from Sjogren's usually do get better on the gluten-free diet, so that is why doctors become confused.  There is so much symptom overlap with AI disease, patients usually can figure it out before their doctors do, by tracking symptoms. I knew I had it long before any doctor tested me but my symptoms are classic for Sjogren's, along with all the dental problems that occur with dry mouth.  We won't go into how messed up my eyes are, especially during allergy season.  I will say that post gluten-free and with the use of Restasis eye drops, things have improved dramatically for the better but I still have my days where the pollen and mold prove to much and my eyes hurt.  But please get tested properly for Celiac because it's important...those 2 diseases seem to like each other and occur frequently together.  My older sister and niece also have Sjogren's so it's a party in my family.......

I'm curious about your eye issues? I have horrible eye problems in relation to allergies (I think?) With my whole eyeball swelling, turning red and painful, as well as burning awfully during allergy season. Is that also partly Sjogrens? Thanks, S. 

Hi, I am so happy I found this! I was diagnosed with Sjogrens at age 28. Fir years, my symptoms we're very mild. Something changed last year, though. Last year (I'm almost 40 now)  I began to experience a slurry of awful symptoms that appeared after eating wheat of any kind. Symptoms include crazily varied things from extreme insomnia, depression, sensitivity to caffeine, weight loss, gastritis, pain in my side, low fever 99-100° that wouldn't subside, awful tremors (intentional mostly), severe joint and leg pain, severe anxiety, headaches and neck pain,  Raynaud's, joint swelling in finger joints, dry eyes, peripheral neuropathy, constipation and diarrhea alternating,  weird heavy feelings in legs, restless leg syndrome, tinnitus and ear pain,   as well as Geographic tongue, burning and itching tongue,lips,  hands, and feet after eating,  among other things. I had Sjogrens for so long with minimal symptoms that I was terrified it was cancer, Ms, etc... Hence, I went to a bunch of specialists through a bunch of diagnostic testing (MRI, 24 urine test, CT scan, x-rays, endoscopy, blood and other urine tests) and my gastroenterologist said they were confident I also have Celiacs! I had quit eating wheat and refused to start eating it again for the so called "Food Challenge" in order to get a 100° accurate diagnosis,  but my gastroenterologist is positive I have it and accepted that I didn't want to have to live through that misery ever again. So, I quit all grain and I slowly began to recover, even gaining weight. However, I introduced other grains back into my diet recently and boom! All of my symptoms came back, argh. I have learned the hard way that I cannot eat ANY grain except, oddly, tapioca. Anyway, I wanted to warn you even though this is an old post so I might save you some misery. Celiacs and other immune system disorders are very specific for each person meaning people can have very little in the ways of symptoms or can be a wreck like I have been when eating grain but I just wanted to give you a heads up :-).  Anyway, thanks for your post! Knowing someone else who is experiencing these multiple immune system disorders has made me feel less alone. I am so sorry that you too are going through this misery, though! I do know that avoiding grain helped me to the point that I became a bit lax and  sloppy ( meaning I began to eat "gluten free" prepared foods like "bread" without gluten to fake Mac and cheese,  I paid hard for it.)

I have found the same thing you have- that we CAN  heal once we avoid a few things - the immune system aggravating substance which can be just wheat or wheat, milk products, other grains, etc..., as well as doing good self care, so meditation, anti depressants when necessary, exercise, sleep (another reason I had to go back onto antidepressants- my insomnia is horrible without them, I have become very despondent over these diseases) and basically giving oneself the permission to take a break if needed without guilt as Sjogrens can flare without any logic. But avoiding grain definitely helps one avoid frequent flares, I have found. I am so tired of these illnesses but thank God it wasn't something worse. I'm trying to keep perspective, lol. Anyway, hope you are doing well and thanks so much for sharing your experience. We are all in this together! ?? 

PS If anyone else has advice, please let me know! Especially about the darn tinnitus and joint pain. It drives me crazy! ?

I have been recently diagnosed with celiac. It causes terrible attacks that start with ear ringing (?) Anyway, I too, cannot eat Budding's lunch meat. I have discovered that it causes a gluten reaction. I did not realize it until the third time eating it as I am vegetarian. But as I literally can eat almost nothing now, I was craving "real food". I ate this lunch meat thinking it was safe and voila! Celiac attack. Swollen, painful ankle, ringing ears, itching mouth, nausea, anxiety, going to the bathroom way too much, etc...I also cannot toletare corn starch so, that might be it? So, I agree, I definitely cannot eat that nor can I tolerate 20 ppm. I empathize with all of you. Looks like potatoes and tea, at least till I learn to cook.  :-p