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Sjogrens Topics => Living With Sjogren's => Topic started by: newmom59 on January 14, 2012, 06:08:14 AM

Title: protein losing enteropathy associated with sjogrens disease
Post by: newmom59 on January 14, 2012, 06:08:14 AM
Hi all. I'm new to this message board or any board for that matter and could really use your help. For the last year & half I've been really ill with frequent vomiting, diarrhea, abdominal pain and major abdominal distention (I look like I'm 9 months pregnant). I've been hospitalized at least 6 times and have lost about 70lbs. A few weeks ago, my doctors finally diagnosed me with something called protein losing enteropathy associated with sjogrens disease.  I was treated with 4 Rituxan infusions, but I am still not completely better. Has anyone dealt with the same symptoms? What can I do for the abdominal distention?
Title: Re: protein losing enteropathy associated with sjogrens disease
Post by: Joe S. on January 14, 2012, 06:41:11 AM
I am sorry that I do not have answers for you. Someone else may. Welcome to the forum, newmom59.

One gal I know looks PG but has fatty organs as the cause. There was no mention of any autoimmune diseases. I have used Reiki and Massage to help her.
Title: Re: protein losing enteropathy associated with sjogrens disease
Post by: Carolina on January 14, 2012, 07:04:45 AM
Ack, Newmom, you sent me again to Google!

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004588/

Protein-losing enteropathy is an abnormal loss of protein from the digestive tract or the inability of the digestive tract to absorb proteins.

Sounds very serious.

I hope you get some relief, and that you could 'spare' a few of your 70 pounds.

Want some of mine?  *(BAD JOKE, sorry).

Hugs

Keep us posted.

Elaine
Title: Re: protein losing enteropathy associated with sjogrens disease
Post by: prunella on January 14, 2012, 11:16:01 AM
Welcome to the board.

Possible wheat allergy?

beth
Title: Re: protein losing enteropathy associated with sjogrens disease
Post by: Nancy60 on January 14, 2012, 11:39:14 AM
celiac disease was my first thought...it is common to occur with sjogrens and treatment with gluten-free diet can be very very effective for the celiac caused symptoms. 

Nancy
Title: Re: protein losing enteropathy associated with sjogrens disease
Post by: lolo1979 on January 14, 2012, 12:01:23 PM
My thoughts exactly, celiac disease!  But then, your doctors seem to have given you a very specific diagnosis which I can only assume was given after considering most all other factors.

Anyway, Celiac and sjogrens have a close relationship- something like 15% of people with sjogrens have celiac, or vice versa. Google sjogrens and celiac and you can probably find the statistic.

Hope you get better very soon!
Title: Re: protein losing enteropathy associated with sjogrens disease
Post by: newmom59 on January 14, 2012, 05:38:39 PM
Thanks for responding. My doctor ruled out celiac disease. Despite them ruling it out, I tried the gluten free diet anyway and it did not help. I am currently out of the hospital on a regular diet and TPN to help me gain back some of the weight I lost.