Child W/ Low Igg, Igm, Chronic Diarrhea...

[hunter6009]

Hello all! Hoping to find someone with similar problems.

About a year ago my entire family got the worst stomach bug ever. Barf! My husband and my youngest child got better within a week. My oldest (7 years old) and myself did not. I work for a lab in sales and was doing celiac work at the time. When I didn't get better (again as this usually had happened with me when we got sick) I tested myself for celiac. Low and behold I had positive labs. My uncle is a GI and I was scoped- yes I have celiac. I've been gluten-free for a year and feel great!

Fast forward one year and my son is still having chronic diarrhea. He also sees a Pediatric GI. Tested twice for celiac (negative) he does have the gene, total IgA normal, negative for Crohns/Ulcerative colitis, had endoscopy/colonoscopy (normal). Only findings were mild gastritis and superficial colitis (nothing of note in otherwords). He's had two stool samples come back positive for WBC's, but has had 1 that came back normal. GI prescribed Flagyl once month for 6 months. The first 2 months it helped the diarrhea. The last 2 rounds did nothing-he's had diarrhea straight through. I took him to the pediatric allergist to do food allergy testing (although his GI doesn't think that has any clinical signifigance). He showed mild positives to milk, corn, broccoli, bannanas, blueberries, and strawberries (level 1-2). He suggested a food elimination trial for these things to see if he truly has an allergy (high false positive rate for these things). He also use to be my pediatrician as a child before he went to allergy/immunology and he suggested several tests to speak to my pediatric GI about, one of those being immunoglobulins.

Long story short, his IgG (level was 550) and IgM (level was 33) came back low. His GI doc just gave us these results today and wanted us to speak to the allergist since this isn't really his specialty. the allergist is not in until Monday. Doing some research on this I see things like "combined variable immunodeficiencies", etc. Not sure what to make of this or if his levels are 1)considered "defecient", 2) if these levels are acquired from having chronic diarrhea, 3) what the protocol is for treatment from here.

Anyone have similar issues?

Thanks and for all of those of you testing for celiac....hang in there! The first 3 months are the hardest but you couldn't pay me to eat gluten now. I feel amazing!

[mushroom]

Have you ever considered that it could still be gluten despite the negative testing? The testing is by no means infallible and if he carries the predisposing gene, my thought would be trial the diet at least -- what have you got to lose but his diarrhea?

[Lisa]

Have you ever considered that it could still be gluten despite the negative testing? The testing is by no means infallible and if he carries the predisposing gene, my thought would be trial the diet at least -- what have you got to lose but his diarrhea?

Great response !

[MamaK]

My question would be is he deficient in IgE?? My 16 yr old daughter was diagnosed in Jan of this year with CVID where she had not only deficient but non-detectable levels across the board. We had been seeing a ped infectious disease specialist til recently when I had her seen by an immunologist....last week in fact. He asked her if she had been experiencing any GI problems since patients with CVID often deal with GI trouble like GERD, Celiac, etc. We told him that she had chronic diarrhea along with nausea and abdominal cramps. He said that it sounds like Celiac and then said that in order to know for sure, we could do a blood test, do the scope, or just try a gluten free diet until we see him again in 2 weeks and if she's better that is probably what she has that's causing her problems. He also said that he doesn't like to put a kid thru a scope procedure unless it's absolutely necessary and as far as a blood test....since she has no IgE, the test would be negative anyways so it's a "why bother" kind of thing.

As far as your sons levels go....yes, he is considered deficient. Normal IgG level is between 700-1200 and with IgM, anything below 35 warrants attention. I would get him an appt with an immunologist soon.

[hunter6009]

Thanks for the replies!

Not ready to do gluten-free with him just yet. Hard to diagnose if you take out gluten. Plus with two negative tests, and negative pathology, there really isn't a reason. Well yet at least. I know gluten can be hard on the system for other diseases so it's something I will consider one day soon. He's already on what I call a "low gluten" diet b/c it's just MUCH easier to cook gluten-free for everyone in the house with myself being a celiac. Also, his symptoms seem to be more lower bowel (TONS of mucus in the stool, explosive/watery diarrhea, etc) and not upper like celiac.

I hope to speak to the immunologist tomorrow about his labs. I ran a total quant. IgA on him about 9 months ago and it was normal. Plus when I read about CVID I see nothing about mucus and diarrhea. It's extremely frustrating not to have an answer!

Thanks all!

[MamaK]

Sorry....I meant IgA not IgE. Typo-Queen here!! hehe

Hopefully you are able to help him with the immunologist. I know how hard it is to see your child miserable and how hopeless and frustrated a parent can feel at times. One thing with CVID, though, no two cases are the same-it affects everyone differently. I watched my daughter suffer for years and it can be heart-breaking. I wish we would have seen an immunologist right away. You are on the right track. =]