Crohn's Celiac Lupus Low IGA High ANA

[Daisylouu]

My daughter is 19 years old. Endoscope looking for reflux 7 years ago showed villi blunting and was told probable Celiac.  Has been gluten-free since.  Joint pain started 5 years ago. Very high ANA 1:1280, nothing else to support lupus, being followed by rheumatologist who is leary to diagnose Lupus.  Past 2 years, colds turn severe, swollen glands in throat and respiratory distress, ends up on steriods, inhalers, etc.  Blood test determine IgA low.  Past few months, battling bloody diarhhea and cramps with no definate pattern.  Sometimes blood streaked formed stool, sometime normal, sometime bouts of diarhhea.  Endoscope ok, Colonoscopy showed red, raw ulcers on descending colon and ulcers in Ilium.  Doctor said most likely Crohn's.   I'm desperate for direction and how all these things are tied together.  She is a college student trying to attain her BSN in Nursing.  

[TrudieC]

She definitely has a two or more auto-immune issues going on.  How are they treating her?  Has she been on a round of prednisone?  It is important that they get this under control and possibly look at an immune suppressant to get her into remission.  I agree that she absolutely needs a proper diagnosis on her bowels with a good gastro and on her other issues with a good rheumatologist.

[shelly217]

Has she been tested for chronic lyme disease? I know it may sound crazy, but lupus and lyme have many, many overlapping symptoms, and if her condition is lupus-like and yet not lupus - you should definitely get this checked out.  Go to www.ilads.org for more information.  The best place to get tested is IGENEX.

People with lyme often have gluten sensitivity/celiac.  They also aren't typically correctly diagnosed until after seeing quite a few doctors.

Good luck!

[lizziecee]

I know zilch about lupus, except it is an autom-immune disease, as is Crohn;s, which I have had for 38 yrs now, dx at 24 yrs old, now 63 yrs.

Crohn''s typically presents in the terminal ileum, but it can and does present in the large  colon. The presence of raw ulcers in your duaghter's large and small bowels does suggest Crohn's, but this can only be diagnosed properly with biopsies.  In my long experience, blood tests can suggest the disease, but not diagnose it - pathology tests need to be done on the  biopsy tissues that are abnormal  in the intestines.

I was tested for celiac diseas when first undergoing tests - biopsies of of the villi - negative.  I don't understand IgA testing - nothing I have come across.

When I got a flare of Crohn's, my faeces had blood streaks, and then horrendous haemorrhages requiring hospitalisation with IV steroids and blood transfusions.

I would be very worried about her doctor's diagnosis "probably Crohn's" - she needs a definitive diagnosis to go forward for proper meds and treatment

My long experience tells me you do not mess with Crohn's - it is an incurable disease, but now, eminently treatable with the new immuno-suppressant drugs.One of the problems with an autoimmune disease is that one's white cells are elevated,and you are are susceptible to major infections when taking medication to suppress the white cells.

Perhaps she could get a second opinion, as she surely does need help. Suggest she finds a gastro who has good experience of Crohn's.
My thoughts and prayers are with you both.
Liz in England..