4.5 year with chronic abdominal pain & fever

[JStasinos]

I have a 4.5 year old daughter who has been complaining of abdominal pain since September. Associated symptoms of intermittent diarrhea, poor color,  weight loss, and chronic low-grade fever. It is cyclical started with extreme tiredness, color changes from normal to very pale, onset of fever, then onset of abdominal pain. We have been tracking it to about every 2-3 weeks.

Initial GI labs all normal (taken in Dec), allergy testing for whey, egg, milk, wheat-negative, AST-31, ALT 15, tTG AB, IGA 0.4, Giliadin IGA 1.9, Giliadin, IGG 4.7, IGA, 167, CRP, 0.5

Ultrasound of abdominal, pancreas, etc normal
Hospital stay of 5 days in MArch, due to dehydration from Rota virus, admitted for IV fluids, was supposed to remain just overnight, remained longer for observation.

Colonoscopy & endoscopy performed May 20. Initial results appeared all normal. Biopsy results  revealed lactase deficiency, (which GI does not think is accurate as she does not fit the "profile, no sure what to make of that), biopsy of the esophagus showed mild irritation, small intestine show mild, non specific inflammation. Presence of monocytes (GI states normal in young children) -having follow up 7/10

Another hospital stay 5/26/09 for observation due to pain, lethargy, fever...abnormal labs- show
CRP 22.2,
RDW- % neut 68, % lymph 26
ESR 21
white count 10.2
CT scan of abdomen-normal

Upon recommendation of pediatrician, saw immunologist who ran addl labs (pending), but also wanted referral to rheumotologist and return visit to GI as he interpreted some of the GI biopsies as abnormal.

We have been trying to get a handle on this problem, but no one doctor seems to be able to grasp what is going on. Symptoms or frequency is not improving. Any suggestions?

[Matthew007]

well lactase ..or low lactase would indicate malabsorbtion issues caused my lactose intolerance so that's one start.  You could try buying some lactaid tablets to see if that helps...or lactic acid which is found in some probioitics.

Since she's been so sick, honestly i'd suggest going totally off gluten/wheat/soy/lactose (i'm sure board members are sick of me saying this..sorry) but even with negative blood tests she still could be intolerant to all of those.  Best way to test is to go off those for at least 2 weeks and note any improvement.  I was tested 3 times for celiac, 2 negative endoscopes and since I went off wheat/gluten/soy/dairy my symptoms have improved and my nausea and pain has gone down.  Then after 2 weeks you can slowly add one thing to her diet just to see what reaction you get.

Food intolerances really...there's nothing to test for or there's no test out there for food intolerances, there are super expensive stool studies you can do but they still are not exact.  Allergies yes, there are blood tests and skin tests you can do only if the immune system is attacking it....food intolerance no.  Only way is to eliminate foods.  Many people with celiac/gluten intolerance become intolerant to lactose due to damage to the small intestine...it takes time, weeks even months.

There are other things it could be..something with the lymph nodes and all but celiac/gluten intolerant people have suffered all those symptoms.  Basically her immune system is going bezerk on something and you need to remove it.  Good luck :S  (just a warning some people who are gluten intolerant can't even have gluten in their shampoo or breath gluten that's how bad they are..)

[Matthew007]

another idea is to test her thyroid..for extreme tiredness and illness..

[JStasinos]

thanks Matthew 007, we tried the diet elimination a while ago, but maybe I will give it another shot. Although the gastro & immuno both felt strong would not be related due to the fever

Thanks for the suggestions though!

[Matthew007]

well I agree the fever sort of is a curveball thrown into the mix...i'm sure your doctors are ruling out lymphoma and other things..and it's good to keep looking for answers because there are rare things out there.  I'm thinking of the basics, but I have heard of people having a slight fever even going off of gluten so it's possible.  The hard part is you may try a gluten/wheat free diet for a few weeks and say "nope that didn't work" but then it may have been soy that was masking it.. or dairy/lactose.. so it's best to just eat simple simple things like eggs (which you can be intolerant to) to salads/fruits/meats and just keep it simple for a few weeks.  

But yeah that fever is not normal and does suggest infection..is she having problems with her sight at all?  Whipple disease causes stomach issues...I dunno that's a hard one, i'd continue looking for answers but try the diets at the same time.  I didn't believe in them, and thought there was a test that would give me answers but there wasn't.  

good luck though that is scary :S

[Matthew007]

also you could pay the $16 bucks and get an opinion on here from the expert GI.  He could list the  possibilities