I don't know where you live and I'm far from an expert on EoE but from what I have read, the standard to figure out triggers is to pull top foods and rescope and continue to do this until it narrows down the triggers.

Skin testing has a very, very high false positive rate and has only a 10% rate at finding EoE triggers so it isnt' very useful at all.  Patch testing is also not supposed to be very accurate. 

I would not count testing positive to more foods than one used to as meaning much of anything with regard to EoE.   

Are you in the USA, Canada or UK?

Hi Lilpig 

I have absolutely no ideas or information for you, just want to say hi and let you know that you are missed! 

Can anyone offer thoughts on why the body starts making antibodies to all sorts of foods? I included our Ige testing and EE information for personal history that may trigger an angle I haven't thought of yet.

TIA

Quote from: lakeswimr on March 24, 2015, 09:16:22 AM
Blood and skin testing are not good ways to find EoE trigger foods.  They have only about a 10% rate.  what I read over and over is that the way to do this is to pull the top 6 (which is the same as IgE top 8 foods).  Then go a few months not eating those foods and rescope, see if the eosiniphil count has dropped down below 15.  If so, then you can try adding foods back one at a time to see if you can narrow down your trigger food.  Another approach is to cut out just wheat and dairy as they are the two most common trigger foods. If you aren't clear after a time off them and rescope then cut more of the top trigger foods.

Most people have only one or a couple trigger foods but some have more. 

I would say the testing you did is about worthless, unfortunately.  Are you working with a GI doctor who knows EoE well?  Many do not. 

How did he get diagnosed? 

Was he having any EoE symptoms?  People can be outwardly symptom free so the only way to tell if a food is a trigger is by avoidance and then rescoping and checking the eosiniphil count.

Some people take medication instead (swallowed steroids) and some must do both.  Some need to be formula or even tube fed but that is rare. 

I think you need a different doctor to work with you on this who is familiar with EoE.

Hi lakeswimr!

He was dx by EGD bx's. See link above for his story. And yes, he was very symptomatic... progressed from chest pain, stomach pain, to vomiting before being scoped. He was a mess in there. High eos counts, swelling and furrowing. Went on omeprazole and swallowed flovent for two months to heal things up and major elimination diet. Second bx looked great. Then off meds with continued major elimination diet, and the 3rd bx was at 80 eosinophils.

While ige testing isn't always helpful in finding ee triggers, it is ALWAYS done by top EE clinics as part of the patients overall allergic picture. I don't believe it to be worthless at all and neither do the clinics. We have a referral to a top clinic and hoping to get in soon. I am still working on getting patch testing for him here locally because I think that will be revealing. We have to supplement with Neocate Jr. per RD as he dropped about 18 pounds. Getting him to drink it is another thing. :/.

Blood and skin testing are not good ways to find EoE trigger foods.  They have only about a 10% rate.  what I read over and over is that the way to do this is to pull the top 6 (which is the same as IgE top 8 foods).  Then go a few months not eating those foods and rescope, see if the eosiniphil count has dropped down below 15.  If so, then you can try adding foods back one at a time to see if you can narrow down your trigger food.  Another approach is to cut out just wheat and dairy as they are the two most common trigger foods. If you aren't clear after a time off them and rescope then cut more of the top trigger foods.

Most people have only one or a couple trigger foods but some have more. 

I would say the testing you did is about worthless, unfortunately.  Are you working with a GI doctor who knows EoE well?  Many do not. 

How did he get diagnosed? 

Was he having any EoE symptoms?  People can be outwardly symptom free so the only way to tell if a food is a trigger is by avoidance and then rescoping and checking the eosiniphil count.

Some people take medication instead (swallowed steroids) and some must do both.  Some need to be formula or even tube fed but that is rare. 

I think you need a different doctor to work with you on this who is familiar with EoE. 

I have no idea.   

That's a very long list.  Any chance there is a specialist your son's allergist can consult with?

Yes, the foods I listed were all ige serum. We've done two rounds of SPT followed with IGE bloodwork and for the vast majority, they were the same, with a few exceptions.

Good to 'see' you, Macabre. 

LP they're doing more than SPT, right?  ImmunoCAP as well?  You know the high rate of false positives wit SPT.

However I think the real test is how his EE is doing off the foods. Still, I would hate to see him having to avoid based on SPT alone.


I don't know why this is happening to your DS. I'm sorry :comsole:

Boo or CM would be very helpful here I think.

Main question: Why does a body make antibodies to too many foods? It is just the 'allergic march'? but why? I am wracking my brain as to what is causing DS's body to go into overdrive. His CRP is normal, tryptase normal, does have celiac genes present but not actively celiac, HES negative. Would a high viral load, sub-chronic HHV6 1:320 do this? Is there another totally unrelated condition that would make a body develop antibodies like this? What is going on? Maybe it's all just 'normal', but it doesn't seem normal at all to me. Appreciate any thoughts. I'm a medical research junkie on this kid, so get clinical with me if need be. 

Issue: We have entered into some strange territory with IGE allergies. My 10 DS is an atopic kid. EA (ana) for as long as I can recall, PN, TN, kiwi as well . But recently with our new Eosinophilic Esophagits/duodenitis diagnosis, we re-tested as many foods as we could to see if we find out some sort of trigger even though EE isn't really ige driven. Skin testing was a shocking mess (with a beautifully negative negative-control, mind you) and Ige serum follow-up verified what we saw on his back. As far as being symptomatic to these foods, I cannot say it is classic, in fact for as many class 4 allergies that came up, I don't really SEE a lot of things going on....unless its more a behavior reaction. He has sensory issues and is ADHD hyperactive and impulsive type, tics (although better after going off adhd meds) Since going off of these foods, his EE symptoms are better, not vomiting at all at least, OAS is better, esophagus pain is better but eosinophils are still in there (that's going to be a major problem for him and his esophageal tissue if we can't figure out what's causing it, see my EE thread here if at all interested: Pediatric Eosiniphilic Esophagitis and Eosiniphilic Duodenitis, and mental clarity is a bit better. His total IGE dropped from 903 to 671 in the 6 months of being off these foods. I do know with such a high total ige, those class 1's and maybe even 2's might be more 'background noise' as the allergist says.





SERUM TESTING:
class 5
egg

class 4
peanut
walnut
tree nuts   
soy
corn
rice
barley
pea
lima
sesame
sunflower
chicken
peach
banana
cauliflower
squash
tomato

class 3
milk
wheat
buckwheat
malt
turkey
mustard seed
cherry
melon
watermelon
pineapple
broccoli
spinach

class 2
lamb
beef
salmon
tuna
grape
avocado
lettuce
brussel sprout

class 1
hop
oyster
catfish
pepper
kiwi (gives OAS)