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I have been ill with a "mystery illness" for about 2 1/2 years now. My primary symptoms have been gastrointestinal-- diarrhea, abdominal pain, malabsorption, vomiting, nausea, etc.-- but so far, colonoscopies and endoscopies have not revealed a cause.

I do have some lab results-- particularly a consistently elevated neutrophil count and a persistently lowered lymphocyte count-- that point towards autoimmune illness. My other symptoms include severe, chronic fatigue; frequent migraines; history of autoimmune, HYPERthyroidism (though now testing normal); and lots of rashes as a child and teen (but not the "classic" butterfly rash.

I was wondering if others have had gastrointestinal symptoms as a main component of their lupus? Have you heard of lupus presenting like this? Right now, doctors haven't been able to offer much in the way of treatment, because we are unsure of the cause. I'm hoping that if I can get a diagnosis, treatment might be a little bit easier.

From the stickies, here are the lupus criteria that I meet (I put a "*" by the ones that apply to me) :

Malar Rash
*Discoid Rash-- I had some type of rash like this on my hands for several months. I can't confirm that it was a discoid rash, though.
*Oral Ulcers-- Yes, and also nasal (and vaginal ulcers-- confirmed not to be herpes)
*Serositis (pleuritis or pericarditis)-- I believe I have had pleurisy before, but again, not medically confirmed at the time.
Renal Disorder (persistent Proteinuria in the urine or cellular casts)
Neurological disorder (seizures or psychosis)
*Hematologic disorder (anemia, Leukopenia or lymphopenia on two or more occasions, thrombocytopenia-- consistent lymphopenia, occasional thrombocytopenia
Immunologic disorder (positive LE cell preparation, abnormal anti-DNA or ANTI-Sm values, False postive VDRL (syphilis test)-- not done yet
Abnormal ANA Titre[/QUOTE]

And I have to add that the team of doctors at St Thomas' Hospital in London England (Including Dr. Graham Hughes, leading Rheumatologist) compiled a list of Criteria to correspond with the one I just posted. It is:


1. Teenage "growing pains"

*2. Teenage migraine

*3. Teenage "glandular fever"

*4. Severe reaction to insect bites

5. Recurrent miscarriages

*6. Premenstrual exacerbations

7. Septrin (and sulphonamide allergy)
[I don't know that I've had Septrin. I'm allergic to penicillin.]

*8. Agoraphobia

9. Finger Flexor Tendonitis

*10. Family history of autoimmune disease

11. Dry Shirmer's Test

12. Borderline C4
[don't think I've had this]

13. Normal CRP with raised ESR
[very low CRP....not sure about ESR...just had that one re-tested and results aren't back yet]

*14. Lymphopenia

[B]Neveragainin444[/B]-- No, I actually don't have GERD. I do have a hiatal hernia, and I know that it often causes GERD. I'm lucky that it hasn't for me. Even with the nausea and vomiting, I don't get heartburn. I just get nausea and pain and throw up. It's actually the diarrhea and lower abdominal cramps that bother me more. The consensus seems to be that the problem is with my small intestine (not my colon) and that I have some kind of secretory diarrhea.

I have been diagnosed with IBS, but my symptoms seem to be greater than what would be seen were the problem solely IBS. I don't doubt that I do have IBS...but I think there's more to it. For instance, before I became ill, I weighed a healthy 125 lbs., which is perfect for my height. I dropped down to a low of 89 lbs...and am still only up to about 94 lbs. My body mass index is classified by the WHO as "borderline starvation."

You do make a good point though-- that medication for lupus could easily make my GI symptoms worse. I have thought of that, and of course, I'd only want to try lupus meds if I really have lupus. Determining that seems to be kind of difficult though! How are you doing with your stomach symptoms


My primary doctor actually teaches at a university hospital...but he's not a rheumatologist. I've been sent to several gastroenterologists and a couple of endocrinologists but no rheumatologists. I've just started thinking about lupus because I haven't found a diagnosis that seems to "fit."

I just got a call from my dr's nurse today, saying that my ESR and ANA came back negative. I'll have to take a look at the results myself when I go for my appointment and see if they're at all borderline or just completely negative. I haven't had the other antibody tests done. Maybe I should try to find a rheumatologist who is willing to look outside the box....

It's really encouraging to hear that your intestinal symptoms have improved! See, that's why I keep "looking" rather than just giving up and accepting my symptoms as something I have to live with. I figure there's a chance that if I were more accurately diagnosed, I could get better.

Thanks for the input!

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