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January 22, 2009 at 12:49 pm #60491
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InactiveI’m so confused right now. Recently(Fri) we got a call from the Ped that my DS’s RAST testing had come back and it was POSITIVE for SEVERAL foods(milk, eggs, beef, wheat, soy, pnuts, almonds). So, today we had an appt w/an allergist. This allergist basicly told us that Ryan does NOT have any food allergies. WHAT THE?! Don’t get me wrong, that would be GREAT, but huh????? He said that he doesn’t even like testing blood for food allergies(it’s not accurate) and that Ryan’s levels(excluding eggs) weren’t even high enough to be considered allergy. OK, so why does the test specify that anything over 501 is showing an allergic reaction and all of Ryan’s levels were close to anywhere from 600(soy)-5590(eggs)? Does anyone have any experience w/this to be able to tell me if we should get a 2nd opinion? He also said that Ryan doesn’t need to watch any foods that he eats and that he doesn’t “fit” the typical signs of food allergic. Then why does my Ped insist that he has allergies everytime we go there b/c mainly of his allergic shiners?! I’ve read in great length info that Sheri has posted and having done research online, I just don’t know what it all means in regards to Ryan’s tests. What should we do? The allergist said that if Ryan isn’t vomitting, diarrhea, instant rash/hives, or wheezing…then he has no food allergies. Well, NO, my child doesn’t have those symptoms but this is what he DOES have…Allergic shiners, eczema(has recently been improving). So, based on what he said, should we just ignore those results(RAST) and cont feeding him the foods he’s always eaten? Also he didn’t think it was necessary to test Ryan for celiac b/c he doesn’t “fit” the typical celiac description and b/c I don’t have it(my aunt, & great uncle have it). One more thing…He said that, “Obviously he has some sort of allergy going on in his system b/c his IgE levels were elevated.” But the allergist was thinking more environmental/seasonal allergies. PLEASE HELP ME!!! I’m so confused right now. What should I do?
January 22, 2009 at 2:26 pm #60497Inactivenot to sound smug, but i think i know quite a bit about celiac disease—-out of necessity, since we have lived with it for 3 years now—-and your allergist is an IDIOT when it comes to understanding celiac. there is no “typical” celiac description like they used to think there was. all 3 of my girls had different symptoms—–kassie was nauseated and had the runs, tianna had rashes, and molly had no symptoms. and, as far as you not having it, neither kevin nor i have celiac, and as far as we know, no one in either of our families has ever been diagnosed with it, and yet we still have 3 girls with it—-you at least KNOW it is in your family genetics.
since kevin and i both carry a celiac gene, we now know that at least one or both of each of our sets of parents also carries the gene.as far as the allergies, eczema does not necessarily indicate allergies. i have atopic dermatitis and it is not connected to any allergies. also, allergic shiners aren’t always necessarily allergic shiners—some kids just have circles under their eyes because they have skin that is fair.kids can outgrow a number of food problems with time, although i THINK that shellfish and nut allergies are considered a lifetime diagnosis and they usually cause anyphilactic reactions—-i’m sure i spelled that wrong.considering how wrong your allergist’s info is on celiac, i would wonder how up to date he is on the rest of his info—–i vote for getting another opinion.January 22, 2009 at 2:26 pm #60498InactiveI would get a 2nd opinion. And I would avoid those foods until you get the 2nd opinion. May allergies kids can out grow but the more you expose them to the food the less likely they are to outgrow it. I do know however that we did skin pricks before we did blood work for the allergies and the only RAST we actually did was for the egg b/c that was the only food he tested positive for on the skin prick (it was HUGE, spread into the pricks on either side of it) and my ped got us an epi pen, not the allergist. It is possible that he does have environmental allergies (Cooper’s are horrible and he is younger than most with those) But again I would get a 2nd opinion ASAP!
January 22, 2009 at 3:00 pm #60501InactiveReally interesting. Sorry, I’m not much help here… but your post is making me wonder about Ben. We never did RAST testing for him, but I was always sure he had some food allergies. We did do the skin prick and nothing showed up. But I wonder if something would have shown in the blood work.
Who knows.. the doc. almost makes it sound like while you son is obviously reacting to certain foods, his reactions aren’t severe enough to put him in the ‘allergy” category. But that’s just totally subjective, from what I can see. Would make sense that those foods, at the very least, are intolerances for your son, so I agree to avoid them until you get another viewpoint. The fact that his eczema is clearing up since avoiding those foods also makes me think that he is certainly reacting to some foods.January 28, 2009 at 3:23 pm #60648InactiveThanks for your responses ladies! I agree…The problem…I talked w/the Ped about getting a 2nd opinion and she said they’ll(our ins.) refer us to the same office just a diff Dr. She was very surprised by his responses, she didn’t agree w/him at all, obviously. So, we’re staying away from those foods. We’re gonna give it a good month or so and if we haven’t noticed any “real” changes then we’ll maybe introduce things back in SLOWLY. 🙂 Also, I’m thinking about calling the allergist back up and requesting that he “calms my fears” and goes ahead and Skin pricks him, that’s the LEAST he could do. We’ll see…
BTW, Christine…My Ped agrees w/you as far as “typical” symptoms of celiac. So, she was also very surprised he didn’t go ahead and test Ryan b/c of our fam. history now…
THANKS AGAIN!!!
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