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Veteran Member

Date Joined Aug 2007
Total Posts : 4399
   Posted 9/6/2007 4:08 AM (GMT -6)   
Is it possible to have Lupus without having anti-ds-DNA antibodies?  Also, is it possible for Lupus to affect the gastrointestinal tract only and not other organs (such as the kidneys, etc.)?
I went through the criteria and the St. Thomas alternative criteria and I have at least 5 of 11 Criteria, and 10 of 14 of the St. Thomas alternative criteria.  I have an ANA of 1:320 and the pattern is dual - speckled and homogenous.  But no specific antibodies are identified.  I also have the Lupus Anticoagulant (an antiphospholipid antibody) and a prolonged PTT.
My Rheumatologist told me I have Undifferentiated Connective Tissue Disorder, but I don't have symptoms of any of the other CTD's other than Lupus, except maybe Sjogren's (but blood tests are negative for SSA & SSB antibodies).  My ESR/SED rate is very elevated (has been as high as 102, was down to 70 at my last blood test a couple months ago).
My Internist says it's secondary to the inflammation in my gut.  Unfortunately, nobody seems able to figure out what's causing the problem because the biopsies are so non-specific.
Gluten & Sulfite Sensitivity
Multiple Food & Inhalant Allergies
Gut problems - dysmotility througout, & non-specific inflammation in the small intestine.

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 9/6/2007 8:51 AM (GMT -6)   
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.

In His Grip!,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
Co-Moderator ~ Lupus Forum
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's, Irratable Bowel, Inflammatory Arthritis
Clickable Links:   Healing Well:  Lupus Resources ~~ Lupus Foundation of America (LFA) Facts and Overview: Lupus.Org  ~~  Criterea for Diagnosing Lupus (4 of 11):  Lupus Criterea  ~~   Lupus Foundation Chapter near you  Lupus Chapter Locator

Veteran Member

Date Joined Dec 2005
Total Posts : 1944
   Posted 9/6/2007 6:54 PM (GMT -6)   
Hi Razzle--
I'm sort of in the same boat, but my ai problems are the result of liver problems and past interferon treatment, although I had ai problems before that, interferon is a very very powerful immune booster and it made my ai much much worse. Because my ai disease is secondary--caused by other illnesses and the interferon rather than genetic, I don't have like the ds-dna, just speckled ANA and no ssa-ssb, though biopsies confirmed sjogrens. If you give someone enough interferon, a substance that your body makes to fight infection, you will develop ds-dna and full blown lupus, so if this is true, then it follows that ds-dna is something that may show up as your disease progresses, and my rheumatologist believes this might be true in my case, but then I am a special case--in more ways than one, LOL. I also have hashimotos and fatty liver and arthritis and IBS so all these things cluster together and I don't think they know all the different syndromes that cause all this stuff. I'm having severe gut problems now and I can so so feel for you in that regard. I hope that you feel better and keep trying to get answers, its all you can do. I've been struggling for over 14 years now and am just beginning to see the illness come into bloom, unfortunately. I just wonder how sick I have to get before they get a handle on this stuff. I'm sure you feel the same way, and it is so frustrating. Well, know I am thinking of you and wishing and hoping for you to get a speedy dx and the treatment you need!
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

Veteran Member

Date Joined Apr 2006
Total Posts : 1329
   Posted 9/6/2007 9:18 PM (GMT -6)   
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.
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
Meds: prednisone (6mg & tapering), 75mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
Maintain your optimism and you can beat the odds.
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller

Veteran Member

Date Joined Aug 2007
Total Posts : 4399
   Posted 9/7/2007 3:39 AM (GMT -6)   

Thanks for your replies. I'm not on anything right now for the UCTD except homeopathic Causticum (the remedy makes my joint pain go away). I tried Hydroxychloroquine for a while but it started to bother my eyes and so I stopped taking it. My Rheumatologist also wanted me to take Aspirin for the Lupus Anticoagulant, but I'm allergic to Aspirin and can't take that. I know some herbs & supplements can do the same thing (i.e., prevent blood from getting too sticky), so am looking into that approach instead. It's tricky to find things I can take for my symptoms because of my long list of sensitivities and allergies. I've tried to eat cultured milk and can't do much because of the sulfites generated by the lactobacilli.  I do manage to eat some yogurt now and then. 
Current airline restrictions make travel to distant places for a 2nd opinion very difficult for me because I have to bring my own food & water. Does anyone know a good Rheumatologist in the Pacific Northwest?


Gluten & Sulfite Sensitivity, Multiple Food & Inhalant Allergies, Asthma, gut issues (dysmotility, non-specific inflammation), UCTD (Lupus?)
Meds:  Pulmicort, Claritin, Injectable Vitamin B12, Herbs, Nutritional Supplements, Essential Oils, Homeopathy.

Veteran Member

Date Joined Dec 2005
Total Posts : 1944
   Posted 9/7/2007 5:02 PM (GMT -6)   
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.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

Regular Member

Date Joined Mar 2007
Total Posts : 153
   Posted 9/8/2007 1:15 PM (GMT -6)   
I just wanted to mention that last year, prior to my diagnosis, I had abdominal pain of an unknown origin, with a fever that went on for several months. The finally did surgery to remove my appendix just in case. What they found was that the entire mesenteric lymph system was inflamed and enlarged. My rheumie feels it was lupus.

I am still having problems with my GI tract.

I am having tests for my small bowel as well. I am currently fighting clostridium difficile, a hospital acquired colon infection, but it does not explain all of the symptoms I am having.

I cant answer your question for sure, but I do know that Lupus can attack the GI...and I think if I am remembering right, I googled that, and came up with several studies done, or cases shown about Lupus effecting the small bowel. You might try googling it.

Also my ana came back high the first time, same pattern as yours, but I was negative for the other Lupus specific things.

Wishing you well,
Chronic Fatigue 1990 * Migraines 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007* Clostridium Difficile 3/07

Veteran Member

Date Joined Jan 2005
Total Posts : 659
   Posted 9/8/2007 8:54 PM (GMT -6)   

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.


DX: Kidney Disease, (? Lupus Nephritis) 2002
DX: Raynaud's Phenomenon and Lupus 2005
DX: Anorexia and Hypokalemia 2006
meds: plaquenil, lasix, klor-con

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 9/8/2007 9:01 PM (GMT -6)   
Hi Razzle:

I've got strange blood tests too. Sometimes my double stranded DNA is positive and then negative. My ANA is positive and then negative. I still have the DX of lupus even though my labs are sometimes negative. It's a very small percentage of lupus patients that don't have positive labs.

I hope that you're doctor throughly investigates your symptoms and can give you a more confirmed DX. Don't give up, sometimes you've got to go through several doctors before you start to getting your condition started on the correct medications. Please feel free to come hear and ask any questions you'd like to ask.

Hope you have a good rest of the weekend and I hope you're feeling a bit better.

Take care,
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

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