Sjogren's Syndrome Support Group
Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.
Hi everyone.
I was just wondering if any of you have been diagnosed with Celiac Disease on top of Sjogren's.
The reason I am asking: My primary symptom was edema. It started shortly after the birth of my second child. Next I had fatigue followed by dry eyes, dry mouth, fatigue....well you know the rest.
Anyways, I have a cousin that is very sick right now and is in ICU and was diagnosed with Celiac disease. I know that it is hereditary so I started to look up information on it. When I got to the symptom checker, I almost burst into tears. I have many of the symptoms of Celiac. Funny thing is that my doctors keep telling me they don't know why I have the symptoms I have (peripheral edema...mostly) and how they are related to SJS or SLE and one even repetedly told me I was a medical mystery.
No now I am thinking that I don't have SLE or SJS and have had Celiac this whole time.
I know that Celiac is autoimmune as well so I was wondering if anyone else has been diagnosed with SJS and Celiac at the same time.
Thank you so much!!
I was just wondering if any of you have been diagnosed with Celiac Disease on top of Sjogren's.
The reason I am asking: My primary symptom was edema. It started shortly after the birth of my second child. Next I had fatigue followed by dry eyes, dry mouth, fatigue....well you know the rest.
Anyways, I have a cousin that is very sick right now and is in ICU and was diagnosed with Celiac disease. I know that it is hereditary so I started to look up information on it. When I got to the symptom checker, I almost burst into tears. I have many of the symptoms of Celiac. Funny thing is that my doctors keep telling me they don't know why I have the symptoms I have (peripheral edema...mostly) and how they are related to SJS or SLE and one even repetedly told me I was a medical mystery.
No now I am thinking that I don't have SLE or SJS and have had Celiac this whole time.
I know that Celiac is autoimmune as well so I was wondering if anyone else has been diagnosed with SJS and Celiac at the same time.
Thank you so much!!
It's definitely possible to have both. The typical symptoms of Celiac Disease are quite different from typical SJS/SLE symptoms. But both being autoimmune, there's some overlap.
Celiac Disease is relatively easy to diagnose. Make sure you ask for the full panel test including the gene tests.
Good luck.
Plaquenil controlled my symptoms for years. Then I gave birth to my third child, and the shit hit the fan!!! My body hurt all the time, My joints were swollen, I was exhausted, I started having nervous system issues, my eyes were so dry I was constantly having corneal abrasions, my mouth was so dry my teeth were falling apart and I had sores that prevented me from eating and drinking a lot.
Anyways, I fired my rtheumatologist after hearing she did not know what was wrong with me and that I was a medical mystery at each visit. I saw a new rheumy on the advice of a friend with Lupus. He diagnosed me with Sjogren's on top of Lupus but said that no testing was needed because he did not want to subject me to the pain of the tests and that he could diagnose it based on the fact that I already have Lupus and the fact that I had repeated corneal abrasions, dry eyes, and severe dry mouth.
Now, I have been in "remission" with the Lupus but my rheumy says that Lupus is not my problem....Sjogren's is! Then I read about Celiac and even though I know at one point I was positive for Lupus, I wonder...
The Plaquenil worked great for a while but I had to come off of it due to a reaction to it that caused black streaks under my skin and other problems. The methotrexate has done absolutely nothing for me. I had to come off prednisone because it was making my sugar way too high. Now he wants me to consider Benlysta, which scares me to death!!
I have to wonder if the Lupus eds are not working because I don't have Lupus.....maybe I have Celiac. Problem is that raising 3 kids on a very tight budget, out diet is mainly pasta because it is cheap. I want to try a gluten free diet to see if that resolves some of my issues, but can't afford all the special diet and I don't eat red meat!!
You can get tested, but the tests often have false negatives. A simple way to check is to go totally gluten free for several weeks and see how you feel. I did this and found huge relief in joint pain and swelling. My knuckle bumps even shrank and disappeared.
If you intend to do the testing, however, you will need to do that before eliminating gluten from your diet, or you will compromise the test results.