Sjogren's patient with anti-endomysial antibodies. Would love advice!

[elledoubleu]

Hello all,

I was diagnosed with primary Sjogren's seven years ago and secondary Raynaud's a year and a half ago. My primary care doctor did a blood panel on me recently and I came back positive for anti-endomysial antibodies of 1:10. The gliadin IgG and IgA were in the normal range.

Before I was diagnosed with Sj, I had horrible GI problems. Finding out I had Sj was a complete surprise (those symptoms paled in comparison to the GI issues) and I found out Sj and wheat often don't get along. I was gluten-free for over 5 years which helped tremendously. Then I went to France in early 2016 and caved into baguette temptation and have had gluten in my diet since. Oddly my GI symptoms weren't nearly as bad. Before I had terrible bloating and diarrhea. Now wheat just tends to constipate me (with some bloating).

I think some docs had tested me for Celiac, but I was gluten-free at the time. I'm not sure if I was tested for the genes, but maybe. But now I have some antibodies showing up.

I am supposed to follow-up with a GI doctor for more testing. Has anyone else here had an experience with Celiac on top of Sjogren's? Any insights would be greatly appreciated.  Is it possible that the anti-endomysial antibody could be related to Sj? I read that this antibody is very specific to Celiac, but that it can appear with diabetes, autoimmune liver, etc., none of which I have.

Thank you.

Liz

[irish]

When you have celiac disease you can have sjogrens and vice versa. I would not spend a lot of time or money investigating this as there is not much you can do about it. If you have GI symptoms and you do better on the gluten free food then do what works. Sometimes you can still have some GI problems when on GF diet and it could be related to pancreatic enzyme shortage with the Sjogrens.

My hubby had Celiac Sprue and was on GF diet close to 40 years. I think he had Sjogrens cause he had symptoms but he didn't want to pursue diagnosis. My youngest son has celiac disease and is pretty sure he has the Sjogrens as he also has so many symptoms. He is on GF diet and still has some GI problems. I have advised him to  take the pancreatic enzyme tablets and he is not wanting to add more things to his life at this time. This sons oldest son was on GF diet at around 5 years of age due to a ton of GI symptoms./ Doc said why do the testing with a family history of celiac. n

I have sjogrens, myasthenia gravis, hashimotos, bullous pemphigoid and autoimmune ear disease. I was having all these GI symptoms and had all the blood work for celiac and neg. so then blood work for pancreatic enzymes and they were borderline. GI doc said take the enzymes cause people with Sjogrens have a lot of pancreatic enzyme deficiencies. It made a difference for me. Irish