What Questions Should I Be Asking?

[momto3]

Long story, but I will try to keep as short as I can.

My youngest is currently 20 months old. About 7 months ago, we noticed that he was breaking out in a bright red rash on his legs, back and belly. Pediatrician diagnosed atopic dermatitis and prescribed steroid creams. Those helped, but he was still breaking out on back, belly and face. I started keeping a food diary, and I made a connection between wheat products and the rash/hives. Poor kid would scratch until he bled!

I put him on a gluten-free diet. Pediatrician did allergy panel (all negative) and Celiac (negative but had been gluten-free for at least 2 weeks). We noticed on gluten-free diet that he had a positive change in bowel habits, was gaining weight after slipping at 15 mo well check and was less irritable (even extended family noted that).

Saw an allergist this week, skin test only showed tree nut allergy (whole other issue). Did another blood panel for allergies and Celiac. Allergist said why not do it even though he's been gluten-free for 6 months.

All this time, we've been thinking wheat allergy. The pediatrician didn't think it was Celiac, but the allergist said with the symptoms and negative allergy results, maybe.

We go back in a month to talk to the allergist about the blood tests and game plan. I'm thinking and hoping to go to a gastroenterologist to get some kind of actual diagnosis one way or another, although I dread putting him on wheat just for testing.

Sooooooo....... What kinds of questions should I be asking right now? I thought Celiac was off the table, now it's back on. Does this sound familiar to anyone? What should I be noting that will help out?

Any pointers appreciated!

[mommy2krj]

False negatives for Celiac run really high in children so young.

I would ask them to

 

A) Give you a copy of the tests they've already run. Doctors...for whatever insane reason...don't always (or rarely I've found) run the full Celiac panel. If they've only run two tests...they haven't run them all. Someone much more familiar with all of this than I am will probably come along and give you the full list of the tests...there are 4 of them.

 

  Ask the allergist if, when you put your child back on wheat (because yes, you'll have to and for quite a while too) if he breaks out in the rash again if they will do a biopsy of the skin around the rash (the clear skin...from what I understand that is where you have to biopsy) to see if it is a Celiac related rash DH (there is a forum here all about this rash, those are the initials because damned if I can spell the names right!)

[mommy2krj]

Umm...sorry I forgot the capital B and the ) make that smiley. I wasn't really meaning to put that there!

[nvsmom]

Welconme to the board. 

 

Mommy2krj is right, false negatives are common in toddlers. Being gluten-free could have affected his results on the first test, and most likely would on the second. kids seem to heal faster than adults and their autoaintbodies seem to often disappear faster.

 

If you decide to retest for blood work, your son will have to eat gluten for 2 or 3 months to get an accurate test.  This is the full celiac panel:

• ttG IA and tTG IgG
• DGP IgA and DGP igG
• EMA IgA
• total serum IgA
• AGA IgA and AGA IgG

The first three tests indicate there is ongoing damage to the villi. The DGP tests are thought to be the best tests to run on kids. The EMA is in advanced cases of damage and is rarely positive in young kids.  Total serum IgA is a control to make sure you make enough IgA for the other tests to be accurate;5% of celiacs are deficient in IgA. the AGA tests show sensitivity to gliadin and are thought by some to work for both celiac disease and non-celiac gluten sensitivity (NCGS).

 

If you can get a doctor on board to test for deramtiitis herpetiformis (DH) you could arrange to biopsy the area AROUND the rash once it reappears and is active. i don't know as much about DH testing as many others, you might want to check the DH forum on how to test for DH. Some are diagnosed that way.

 

If a gluten challenge is too much for your little guy, please let the doctor know. There are many adults around here who couldn't get through a two/three month gluten trial... it wasn't worth the suffering for them. some doctors will worl with that.

 

Best wishes in whatever you decide to do.

[momto3]

Thank you! Extremely helpful! I like going in to the doctor and being able to ask good questions.