Questions?????

Hi Razzle . . . so sorry you are having such a rough time.

The doctors REALLY try hard to keep a Lupus dx OUT of our records. I have noticed this at several docs. I was dx'd by a derm professor at Case Western Reserve (University Hospitals) who is supposed to be the best and she sent, in writing, a letter to my other docs with a Lupus dx. Each other doctor has fought to keep this out of my records and they have finally settled on UCTD and Inflammatory Arthritis. The treatment is the same . . . but it 'somewhat' protects my medical records in case I need to switch insurance. As long as they docs are treating your symptoms, don't worry about the dx they use.

Our gut is the largest part of our immune system, so it stands to reason that you are affected there. Lots of us start out or have intermittent problems with the gut or bowel.

As far as the anti-ds-DNA antibodies . . . I understood that there are a very few people who do have Lupus w/o even a positive ANA. They have been dx'd via skin biopsy or other biopsy. So it really is possible. But, again, the docs try hard to protect our records. Also, your blood work can go positive and then negative and back again . . . so it could take several blood tests to "catch" a positive. I read at one of the Lupus medical sites that the degree to which we are positive does not indicate how sick we are. Some are very high positive and aren't sick at all and visa versa.

If you'd like to make a signature which includes the info at the bottom of your post, click on "Control Panel" at the upper left of the screen and then "Edit Profile". Then you can include that info plus your meds. It's sometimes easier to comment on a post when other members see your meds too. Just keep your signature as short as possible and under 9 lines because of the space it takes on the boards.

I have been using Kifer (fermented milk) and it really helps to get the gut back on track. It is something like yogurt, but you make it at home and it has WAY more probiotics in it. I got the "kifer grains" from my daughter who bought them on the internet. The grains look like cottage cheese and you just add them to milk in a jar and let it sit on the counter for about 24 hours. Then you strain it and you use the grains again for your next batch. Drinking 4 oz per day of this stuff really relieves lots of problems in the gut and bowel and it is tolerated by lactose intolerant people because the fermentation eats up the lactose. It is also good for yeast overgrowth (candidites). Best of all it is really simple, cheap and healthy. It sounds nasty but once you learn more about it, it is a good thing.

I hope the others have some other suggestions for you.

Blessings!

From what I understand lupus can only affect the gi tract.  However, many of us have an overlapping connective tissue disease and uctd is often considered a transitional disagnosis.  So many have an AI disease that is not conclusive and morphs into something else in time.  Lupus is the disease with a 1000 faces and diseases like mctd are ones with 10000 faces. 

There is so much that is imprecise and that is frustrating for patients but also for the docs.

Suggest that you get a second opinion...from a clinic like Mayos, Johns Hopkins, Cleveland, Northwestern.

Bill

Razzle, you might try the universities and find one that is a pHD in a teaching hospital/university medical center. I live in the southeast, not much help.

Hi Razzle,

I do not have ds anti-dna antibodies and I have lupus. I have also had unexplained severe diarrhea come and go for years and all they found was non-specific inflammation. My ANA is 1:640 speckled pattern. I do however have kidney involvement and that is what gave me my diagnosis so quickly. I believe that anything is possible with lupus so hang in there. I can understand your need for answers, and I hope you can find meds that your body will tolerate. Keep in touch.

Sandy