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    Old 06-09-2010, 09:28 PM   #1
    AnonymousUser47
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    Gastrointestinal symptoms in Lupus?

    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) :


    Quote:
    ACR CRITERIA FOR DIAGNOSING SLE
    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.
    Photosensitivity
    *Oral Ulcers-- Yes, and also nasal (and vaginal ulcers-- confirmed not to be herpes)
    Arthritis
    *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:

    ST THOMAS HOSPITAL CRITERIA FOR DIAGNOSING SLE

    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


     
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    Old 06-10-2010, 05:36 AM   #2
    neveragain444
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    Re: Gastrointestinal symptoms in Lupus?

    Do you have GERD (acid reflux disease), that can cause those symptoms too (like too fast absorption, diarrhea, heartburn, indigestion, belching, regurgitation, nausea, vomitting, abdominal pain). Your doctor might try doing a PH test on your tummy for that but usually they can determine it from an endoscopy from the damage it does. Have you received any type of diagnosis whatsover, maybe irritable bowel syndrome?

    I think Lupus can attack your gastrointestinal tract from causing inflammation to it, like, inflammatory bowel disease, crohn's. The anti-inflammatory medications to treat autoimmune disease can also have a reverse effect and cause inflammation.

    I have IBS but my problems are mostly related to my upper GI tract, it's due to GERD. They think my B12 & Vit D is low because of that too.

    I had been treated for a month with Mobic and took an antimalarial and my autoantibodies (RNP) went down by half, to my understanding the autoantibodies, in the case of lupus, anti-dna, can determine how bad your flare is (raise and lowers during course of flare), however after that treatment, my endoscopy showed severe lower esophageal inflammation, severe stomach inflammation, and an ulcer so the meds to treat autoimmune disease was not at all helpful for my GI tract, and my doctor took it so I wouldn't end up with a bleeding ulcer. The pain got so bad after he did that though, I couldn't hardly take it. I think the problems were there prior, I actually know that, but they blame it on the anti-inflammatory meds anyways.

     
    Old 06-10-2010, 06:52 AM   #3
    VeeJ
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    Re: Gastrointestinal symptoms in Lupus?

    Hi & welcome. I had 20+ years of GI problems like the ones you describe. Likewise, multiple invasive tests revealed no ulcerative colitis, no Crohn's, etc. This was my nastiest issue! I also had urinary misery (frequency, urgency & occasionally stones), migraines, joint pain and pain along long bones of shins & arms, fatigue, hair loss, weight loss, low-grade fever, and neuro-like tingling. At times, elevated sed rate & leukopenia were found.

    About 14 years after GI problems started, I started getting full-blown annular (targetlike) rashes on upper arms & back. After seeing many dermies, the rash was finally diagnosed by a dermatopathologist as "subacute cutaneous lupus erythematosus" (SCLE), annular (targetlike) form. The method used was deep-punch biopsy plus immunoflourescent stain tests. (I never had a malar rash. I had only one "discoid" scarring, on my face---naturally.)

    Simultaneously my overall illness was diagnosed by a rheumatologist as a "subset" of lupus called "Ro-lupus", which is rare. In it, ANA remains negative but anti-Ro turns positive. I was told that some people with this form can experience the worst lupus problems (e.g., kidney & CNS), but that more often, patients in this subgroup remain fairly moderate. Plaquenil and strict sun precautions have helped a lot. I still experience pain and fatigue frequently. On the other hand, my GI problems, migraines, urinary problems, tingling, etc. resolved quickly.

    Side note: the rheumatologist who diagnosed me was the FIRST doctor I'd seen in 20+ years who wasn't surprised by my GI problems. He was also the first specialist who took one peek at my rash and recognized it (subject to further skin tests, of course). For the record, my rheumie is in a big metro area and is affiliated with a teaching hospital. I think such drs. see the disease in its many presentations & variants... maybe what you need?

    Have you had full-blown bloodwork done, meaning the many autoantibody tests typically done where lupus is a possibility? By this, I mean the basic ANA, but ALSO the many other tests that look for MORE SPECIFIC autoantibodies? (See the "sticky post" re: tests for more info.)

    As for skin, I think a "lupus band test" can be done on either lesional or non-lesional skin. What the LBT can reveal is deposition of "immune junk" between the dermal & epidermal layers of skin. When subjected to immune stain tests, this "junk" can light up in lines considered virtually 100% diagnostic of lupus. (This is the gist of what I was told, as I remember it.)

    I'm only a patient of course! But I hope something above helps you form questions for your drs. and maybe re-think your game plan. I certainly feel for you! Post more when you have time, OK? Sending warm wishes, Vee

     
    Old 06-10-2010, 02:26 PM   #4
    AnonymousUser47
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    Smile Re: Gastrointestinal symptoms in Lupus?

    Neveragainin444-- 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
    now?


    VeeJ


    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!

     
    Old 06-10-2010, 07:13 PM   #5
    VeeJ
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    Re: Gastrointestinal symptoms in Lupus?

    Anon, I hope you see a rheumatologist, because good rheumies know a lot about a lot, as the systemic diseases they handle so often cross over into other specialties.

    Have you read the "sticky post" about APS, antiphospholipid syndrome? It's a blood clotting disorder in which migraines are common, and other problems too.

    When you review your recent blood results with your primary, you could ask if ANA and ESR vacillate. For me, the autoantibody they finally caught, anti-Ro, rises & falls as flares come & go. Meaning, for some things, timing of bloodwork can be crucial.

    What kind of rashes did you have as a kid & teen? I'm curious because I had various rashes & skin problems over time. Itchy scratchy things, probably ordinary dermatitis. More interesting, raised watery itchy blisters, maybe bulllous lupus (too late to know now for sure). Always HUGE swelling from bee, wasp, and yellow jacket stings. Last, the lupus rashes Dx'ed as SCLE.

    Another thought. The most meaningful thing I was ever asked to do was to write up my medical history *in my own words*, then fax to new rheumie, before my first appt. As he read, I believe he was contemplating the "alternative criteria" you cited. WOW. No dr. I'd seen locally had queried about, or reacted to, those "fine points" that lie underneath the standard lupus diagnostic criteria. WORSE, in retrospect, my local drs. didn't even understand the standard "4 of 11" lupus criteria.

    You sound wise & determined, so I know you'll keep pressing. Post when you have time, OK? All my best, Vee

     
    Old 06-11-2010, 01:53 PM   #6
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    Re: Gastrointestinal symptoms in Lupus?

    VeeJ,

    I've had lots of different kinds of rashes. Let's see....
    -In my teens & early twenties, I got hives every day for about 4 years. They were definitely hives, would come and go, itched like crazy and would respond to oral antihistamines.
    -I occasionally get purpura (which isn't technically a rash, but bleeding under the skin).
    -In my tweens and early teens, I had a rash on my hands for about 3-4 years. It was diagnosed as eczema, but none of the treatments helped. It was not itchy but painful and would bleed. That's the one that might possibly have been a discoid rash.
    -I also had a watery blistery rash, like you described. It was in my early teens, in between my fingers. That was gross.
    -I remember one time going to the doctor's in my early teens, and the doctor was just saying that I have extremely reactive skin. He took a ballpoint pen with the tip retracted and lightly ran it down my stomach. A raised, red welt immediately appeared. He said it was due to stress.
    -In my early twenties, I had a rash on my nose for close to a year. This is the closest I can claim to a malar rash...but it wasn't on my cheeks at all...just my nose. It looked like a sunburn, and for months, everyone asked me how I got that sunburn. Not a sunburn. Just a red nose. I felt like Rudolph.
    -I get rashes from various medications, such as penicillin.
    -I react strongly to bug bites. Once, I got a mosquito bite on my eyelid and my eye swelled shut. Also, I seem to get a LOT more bug bites than anyone else.

    Incidentally, I don't get sunburns easily, and I don't seem to get rashes from the sun.

    I just read the sticky on APS. I do have a number of the symptoms, but I have von Willebrand's disease, which is actually the opposite-- a bleeding disorder where the blood does not clot as well. I don't think I could have both APS and VWD, but who knows, right? The APS symptoms actually reminded me a lot of my aunt's symptoms, but she has even more severe VWD. (It's genetic.) I don't think they could treat it if she has APS because even aspirin can cause severe bleeding with her.

     
    Old 06-12-2010, 07:43 AM   #7
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    Re: Gastrointestinal symptoms in Lupus?

    Anon, all I can say is that I hope you keep trying, both within new specialties and also different specialists of types you've tried already.

    The blistery rash I had at age 10 covered most of my body. It wasn't drug-induced (I wan't on anything). I've had tiny itchy bisters on my hands, but these things were huge in comparison.

    I don't think my drs. considered Celiac disease, which might have been a logical possibility, given my severe GI problems... Have your drs. discussed Celiac? I believe it's autoimmune, too.

    I stayed too long with drs. who didn't listen or even pay real attention. Anyone with a "mystery illness" needs a collaborator! The dr. has the medical knowledge, but YOU know YOU in ways he can't. Wishing you progress soon! Let us know what happens next, OK? All my best wishes, Vee

     
    Old 06-12-2010, 09:25 PM   #8
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    Re: Gastrointestinal symptoms in Lupus?

    Thanks for the support, VeeJ!

    Celiac disease fits my symptoms very well. All my doctors have agreed...so they all decide to test me for it again, just to be sure, but I've consistently tested negative. I wish it were celiac disease though, as it is usually controllable through diet. I've even tried going gluten free to see if it would make a difference. Unfortunately, it didn't for me.

    I'll keep you guys updated if I get a diagnosis!

     
    Old 06-14-2010, 05:38 AM   #9
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    Re: Gastrointestinal symptoms in Lupus?

    Good morning, Anon. When were you Dx'ed with hyperthyroidism? I know it can cause widespread problems, but I don't know how many of yours track with it. (I believe GI problems are common in it, dermatitis also?) Did your endocrininologists determine a root cause & prescribe medication appropriate to the cause? Are you retested regularly, to check whether your meds are at a proper level?

    This isn't to suggest you can't have other thing(s) going on---only that it makes sense to review everything you know about your hyperthyroidism, because so far you're sure about it. My sister and two other women I know went thru hyper phase, then hypo. All of them got better help once they turned hypo. (Why, I wonder?) My sister says she was as wretched during hyper phase as hypo. Her problems differed, yes, but the phases were equally bad.

    94 pounds is so tiny! I'm tall & also dropped below 100 at times; and those were the worst times of my life---no energy, no normal routines, nada. I really feel for you & hope you review absolutely everything you've been told to date. Thinking of you, Vee

     
    Old 06-16-2010, 09:44 AM   #10
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    Re: Gastrointestinal symptoms in Lupus?

    VeeJ,

    Yes, hyperthyroidism can cause a lot of problems. However, both my endocrinologists and gastroenterologists don't feel that it would cause the severity of symptoms that I experienced. (For instance, they said it might cause a 10 lbs weight loss....but not a 30 lbs weight loss. It might cause mild diarrhea....but not 10x/day. Extreme irritability is a symptom though, and it explained why I felt like such a mean person during those months!) When I became ill, my thyroid tests were normal. It was not until several months AFTER becoming ill that my thyroid tests were abnormal....and then they were extremely abnormal. Unfortunately, due to a scheduling delay and lack of communication between doctors, the hyperthyroidism wasn't treated at all....but after several months, my thyroid levels went back to normal on their own. Kind of odd, I know. I just had my doctor test my thyroid levels again, and all is well right now on the thyroid front. I don't seem to have the antibodies that are related to Graves disease. (I believe it's possible to still have it without the antibodies, but not as likely.) Doctors are still unsure if I have Hashimoto's. But...right now, no thyroid meds and normal thyroid levels.

    Good thought, though!

     
    Old 06-16-2010, 10:04 AM   #11
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    Re: Gastrointestinal symptoms in Lupus?

    2 1/2 years doesn't sound like your getting better. They can treat you for autoimmune disease and see if that helps you feel better or not, if you have clinical signs, instead of doing nothing, which is obviously not helping you. It isn't like some plaquenil and a good antiinflammatory is going to make you drop dead. I would ask for treatment just to see if it helps. I think we have that right to see if it makes us better or not if symptoms are persistant.

    I get those mouth ulcers and blistering on my lip, makes me so sleepy, and puts me in a flare from hell, the one's that occur on my lip does. It's not hsv either. No lupus rash. But I think 13 yrs of severe fatigue and muscle/joint pains kind of tells it all.

    Did you have a positive ANA or a negative one? My ANA and RNP are positive high. It isn't like you can even grab the doctors attention with that one either, cause they are blowing off my results.

     
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