Best/Most Reliable Testing for a 2 year Old? How Did yours go? Questions about Wheat/gluten,...

[gracemamma]

DD will be 2 next month and has demonstrated sensitivities to wheat/gluten, dairy, soy, eggs, peanuts and potentially other nuts, corn, bananas, blueberries and strawberries.

She has had rashes periodically- sometimes around the mouth, sometimes chest, once full body welts. She has had some bleeding from wheat consuption and dairy and ALL OF IT  keeps her up at night for hours at a time. She has had a pinprick rash on her body for 2 days now that I cannot figure out- (is it citric acid or xanthan gum that supposedly has corn sometimes? Is it the corn derived natural flavoring in the soy free earth balance that was fine until now? Did the soap that I accidentally got in her bath contain wheat or corn enough to cause trouble?).  So I made an appt with an allergist and immunologist who does scratch testing. The idea of anyone scratching up my babies back makes me sooo sad! I am terrified.

Also unlike the IgG ELISA (could be spelling wrong as dont ahve books in front of me) blood test, I believe they only test for what I already think is an issue so if Im missing something I dont think we will learn this. the Dr. office said that scratch tests are the most reliable for this age. I liked the idea of having a broad spectrum of info like the IgG, but also wondering about reliability. 

I remember reading that many allergy tests are not reliable in kids so young, though.  I know when I had her testing for gluten sensitivitity with enterolabs (she has the genes for it) they said their tests aren't reliable at that age because one needs longer term exposure and no interference of breast-milk (still breastfeeding).

I would greatly appreciate your sharing any of the following:

(1) what tests you did on your toddler,

(2) how it went  and

(3) whether the results were accurate.

(4) if anyone has data on accuracy of the tests on little ones this would be wonderful too.

(5) if your child showed sensitivity to peanuts, did you eliminate all treenuts? She seems to do ok with pinenuts and I wnat her to have nuts since we have gone from vegetarian to vegan with her sensitivites. 

(6) for corn, do you think getting rid of the corn-derived flavoring is necesary? What about citric acid and the like?

(7) did you find that your childs allergies lessened during the toddler to preschool years or worsened?

Thank you so much for your help on behalf of me and my sweet little girl who just wants to eat what everyone else is!

(Have a friends bday party with pizza and cake coming up-time for Mama to do some creative cooking!)

[changingseasons]

It's really not bad at all. Most allergists do skin prick tests (SPT) now, not scratch. It's just a tiny poke. The hardest part really is entertaining a 2yo through a long appointment and keeping them from scratching after the foods are applied (because trust me, it is ITCHY!!) By 2 years, the skin tests are usually pretty accurate. And if she's getting full body hives, you definitely want to have that done (as opposed to an IgG test). Most allergists have lots of different food extracts they can use, so you can request for them to test certain things if you want.

The question about nuts- it depends. If it's a "sensitivity", then no, probably not a big deal to eat other nuts. If it's a "true" (IgE) allergy, then I wouldn't be comfortable having any nuts or nut products in the house.

Corn is hard. I think it's best to take it out completely, and then do individual trials of derivatives like citric acid, xanxthan gum, etc.

My daughter's allergies have worsened, but she's kind of a special case (she has eosinophilic esophagitis.) "Normal" kids often outgrow allergies to most foods. Nut allergies are not outgrown as often as other foods though.

I've never heard that the Enterolabs gene test weren't accurate while breastfeeding (or a young age.) We did the test for DD and they didn't say anything about that. Strange.

[gracemamma]

changing seasons: thank you so much for your reply and useful info, as well as reassurance about the skin prick test. Will double check if its prick or scratch. I'm curious about the itching now- wonder if this dissapates quickly or if one is left with an itchy child for coming day and night.

The enterolabs gene test is accurate despite breastfeeding but the stool tests are not- sorry for my late evening lack of clarity!

[scsigrl]

I am pretty sure the scratch and prick test are the same, just called something different.  There is another skin test that injects a lump of allergen under the skin but those aren't the first tests they do (and I don't think they do them often).

As for the itching, they usually slather them in hydrocortisone when they are done.  Not my favorite thing in the world, but it helps them and it's just once so I try and get over it ;)

I dont' think you mentioned being on any medications but they have a guideline for what the child (and presumably the Mom if nursing) would need to be off of for the SPT to be most accurate (which is funny cause they are about 50/50 at best for a positive reaction.)

[gracemamma]

Are they only 50/50 at best? So we could likely go through it all and have false negatives?  My husband and family are already  not very supportive about this and are always so surprised when she's suddenly covered in rash head to toe. If we get false negatives, this coud eb hard, but I guess is part of the process- just trying to discern what to expect etc.  The dr. office said they are very accurate. hmmm.

If its only 50 percent, do people still find the results worthwhile and is the lack of precision across the board or more because of age?

Thanks!!!!

[scsigrl]

50/50 for a positive, it is 90/10 for a negative reaction meaning a negative reaction is 90% accurate.  So a negative is pretty accurate.  

Many people say if you have not seen a reaction there is no 100%.  That said, my DS tested + for peanuts (never having ingested them himself, only through my via pregnancy and BFing) but his blood levels are such that the Dr. would NEVER consider doing a food challenge for them.  Is he allergic-the Dr. seems to say yes and we had epi pens for it.  Do I *know* for sure? No, but I am not going to test the theory anytime soon.

If your issues are more skin/gi/sleeping issues, MOST allergy Dr's won't say it is an allergy. They *may* label it an intolerance but some think if it isn't a IgE allergy, it isn't an allergy (IgE meaning one that can cause an anaphalactic reaction).  That said, those were EXACTLY my DS's issues that led us to testing and got us a diagnosis (along with a definite throwing up reaction to egg after he was 1).  I have often wondered if those ARE the signs in a BF baby where the proteins are there but not in as large a dose.

As for family, if you believe there is something more going on, follow your gut.  They aren't the ones responsible for your child, you are.  You do what you think is best!  If you feel like this is what you need to do (even if you think MAYBE it's an issue) do what you need to do. Family can be tough to deal with when it comes to food issues. I think all the Mom's here would agree that some of those who we would think would be our biggest support turn out to be not so much :(  It's like they take it as a personal dig that they can't feed the baby.  Whatever!

Immunology is NOT a very accurate science :( It takes a long time to figure it out a lot of times.  There are a lot of place to gain support though!  It is a lot of junk to wade through.

[gracemamma]

great clarification and info scsgirl. THank you!!!!

[changingseasons]

We've never gotten a false positive on a skin test. We had a lot of false negatives when she was younger, but they were more accurate by the time she was 2. We don't use anything on her back after the test, and the itching usually subsides within an hour or two.

Skin prick and scratch tests are different- it is literally a scratch vs a poke.

[kjbrown92]

we had intradermal testing which is an actual injection under the skin of the allergen, in 3 graduated doses. Those are not as common. Our allergist calls it a scratch test, but it's really a poke, so they may be the same. And our doctor puts a benadryl gel on afterwards (not hydrocortisone) which takes down the reaction pretty quickly. IF you do get negatives on anything/everything, keep a food journal, VERY detailed. Elimination/Challenge is supposed to be the Gold Standard of allergy testing, and it will show a pattern (to your DH, his family, doctors, whoever). Since I'm the one home with the kids, I would show DH the journal and say documented here, here, and here that this caused that. The GI saw my three months worth of journaling that I brought in, and said "wow, what do you need me for?" because I tracked everything: sleep, rashes, poop, moods, etc. and every ingredient of the food she was eating. If you need help coming up with a food journal, I can send you mine. We went to two different allergists, and for us, they weren't any help, because ours were intolerances. Yours sounds like it might be a combination of the two, some food allergies, some food intolerances. Either way, it's good to do the allergy testing to either find out, or rule it out.

[SweetSilver]

Originally Posted by gracemamma 

I would greatly appreciate your sharing any of the following:

(1) what tests you did on your toddler,

(2) how it went  and

(3) whether the results were accurate.

(4) if anyone has data on accuracy of the tests on little ones this would be wonderful too.

(5) if your child showed sensitivity to peanuts, did you eliminate all treenuts? She seems to do ok with pinenuts and I wnat her to have nuts since we have gone from vegetarian to vegan with her sensitivites. 

(6) for corn, do you think getting rid of the corn-derived flavoring is necesary? What about citric acid and the like?

(7) did you find that your childs allergies lessened during the toddler to preschool years or worsened?

1)  my daughter at two was tested for 16 items: including food and environmental.  This meant that many were done as a "mix", like "tree nut mix" or "grass mix".  

2)  She had little trouble than the test itself, she hated it more as a 4yo.  Don't sweat this part.  The test took 5 seconds to administer, but the waiting for reactions was long, so go prepared.

3)  Yes and no.  The test clearly worked.  Her controls (saline and histamine)  indicated that the test worked, and it confirmed the obvious (dairy).  But it did fail to indicate the trouble we had been having with almond.  That finally did show up at 4, along with a positive for almonds and pecans (tested separately), whitefish, wheat (HUGE!  that one showed up around 3.)  So the initial test was not perfect, and she acquired more allergies between the years we tested.

5)  The allergist wanted us to eliminate the foods with high anaphylactic reaction for a while.  No treenuts, peanuts or fish (shellfish tested positive).  This was because kids with severe allergies can pick up more.  He said not to bother scouring ingredients lists, though.

6)  Google "Corn allergy" and pick up the list.  I am allergic to corn, and the xanthum gum in, say, salad dressing still gives me a bit of a fat tongue.  Even dextrose is on that list, a scary prospect if some severely allergic folks wind up in the hospital.  Some docs might scoff at the notion that corn derivatives cause reactions in such a highly refined state, but clearly it's the truth.  Though, corn syrup isn't as much trouble as corn starch etc.  If a corn allergy is mild, just don't even start worrying about minor corn-derived ingredients because that road is hellish!

7)  At 4 her allergies were worse than 2, but we've reached a steady level.  We will be "challenging" some of the lesser allergens (challenges are still the gold standard, despite all the testing) but we are not willing to challenge dairy (life-threatening) or wheat (devil child! devil child!).  Dairy allergies commonly subside about this age, or become milder.

[gracemamma]

Such helpful info- thank you thankyou!!

kjbrown92- I would really appreciate your sharing the journal set-up that worked for you. Ive bought journals and have been meaning to do this but everyday Im so worn diwn but the nightwaking, tantrums tec. that I ahvent done it. I pay loads of attention to everything though and keep track in my head (which is not nearly as good I know). so I acn recall her specific reactions to specificfoods pretty well. She has had a rash for several days this week that isconfounding me though and was awake 2-4A, 2 nights ago which indicates a reaction.

Is the elimination challenge where you eliminate certain foods for x period of time and then reintroduce forseveral days?

sweet silver: great info- the corn one is a real bummer. She had a reaction after conco di mayo that kept her up basically all night so it was a big one. In talking with the catering manager where we went (and had foods we ahve basically had before) we came up with dextrose on the french fries, cross-contamination of the fries (someti=hing allergenic cooked in oil previously) or maybe cornsyrup in the single sip of margarita that I had from afriend that she got through nursing. So I think corn is a big one which is weird because for awhile (many months ago) she could eat a couple corn chips periodically and be ok- but now Ive just got rid of cornstarch, baking powder etc and am starting to find the hidden corn.

Im going to call the dr, and get more info about how the test is done so we know whats coming- thanks for the heands up on the different types!

[kjbrown92]

PM me your email and I'll send you the various journals I've done (in Excel).

corn is in regular table salt, powdered sugar (except for Whole Foods brand and a couple others who use tapioca starch).

We also did ALCAT testing (not covered by our insurance) which tests for an inflammatory response to food vs. an IgE or IgG test. There was one false negative for each of my children (that I already knew were a problem for each of them). Otherwise that one was right on.

[SweetSilver]

Hain has a double-acting baking powder called "Featherweight" that uses potato starch.  It thickens things just a little vs. the normal baking powder, so experiment.  Of course, you can make your own single-acting baking powder with baking soda and cream of tartar (from grapes) but that is a different creature and does not substitute in recipes calling for "baking powder".

    For homemade flour tortillas (if you're doing wheat) the recipe in the Joy of cooking (baked rather than cooked on the stove) PLUS a teaspoon baking powder makes awesome 100% corn-free tortillas.  (If you use the bread flour instead of substituting all-purpose, you can get away with no leavening at all.)

     My husband just invented a recipe for oat biscuits that is turning out beautifully.  He even can cut them with cookie cutters!  I can't try them, I am allergic to oats, but my daughter who is allergic to EVERY grain but oats and quinoa (not celiac, thankfully) gobbles them up.

     The best advice I was given for challenging a potential allergen* was this:

 (Check with your allergist before challenging the troublesome ones--shellfish, fish,tree nuts, peanuts--at home.  She might want you to challenge in-office.)  After the period of elimination, give just a tiny bit.  If you see no reaction, indulge heavily the next day.  Our allergist suggested an elimination of only 5 days was sufficient before loading up.  For the trouble ones--the ones which commonly have severe anaphylactic reaction, the ones I listed above, test first on skin, then lips.  If it's a go, give tiny bits every five minutes until a single serving is reached, stopping the test at any point which you see a reaction.  Again, for this test, get the go-ahead from the allergist in case an in-office challenge is warranted.  *This will all happen after you get the results back from the scratch test.*

[maryamb]

My son was 20 months when we did a food sensitivity blood test.  Our doctor whom we love said that it would be accurate as of 15 months.  The results were correct and confirmed what we thought all along: corn/dairy/gluten.  we have now removed all three plus grains from our diet.  Unfortuntely by the time we took the test he had a leaky gut since I was giving at least one of those three items to him at a time.  The test results confirmed a leaky gut since he was sensitive to more than 12 items.  So to answer your question:

(1) what tests you did on your toddler:  We did a food sensitivity/allery test by Genova when my son was 20 months

(2) how it went  and-It went great, they took a blood test and the results came back within three weeks.

(3) whether the results were accurate.-Yes, our doctor said this is the most accurate way of finding our sensitivity tests (not just true allergy)

(4) if anyone has data on accuracy of the tests on little ones this would be wonderful too.-See above

(5) if your child showed sensitivity to peanuts, did you eliminate all treenuts? She seems to do ok with pinenuts and I wnat her to have nuts since we have gone from vegetarian to vegan with her sensitivites. -My son showed sensitivity (not allergy) to peanuts, cashews, almonds, walnuts.  Our doctor said this is due to a leaky gut so we are on a rotation diet meaning he can have peanuts/walnuts once a week (sensitivity was medium) and cashew/almonds twice a week (sensitivity was low)

(6) for corn, do you think getting rid of the corn-derived flavoring is necesary? What about citric acid and the like?  Yes.  I have found that anything that has corn in it could potentially cause a problem.  I know it's very difficult to remove it all from your diet so I would say we are at 95% elimination.  With citric acid you can give it to herand monitor it.  I found out that at small amounts my son does ok, for example can of tomatoes or pear juice.  However I am still very cautious.

(7) did you find that your childs allergies lessened during the toddler to preschool years or worsened? Waiting to see :)

Good luck and let me know if you have any other questions.

[gracemamma]

sweet silver- thanks fro the baking powder recommendation- Ive been doing baking soda nd cream of tartar but will try to find the Hain one since we use it for buckwheat pankcakes, Gf scones and the like. Love the oat biscuits idea- if you feel like sharing the recipe, we'd love to try this!  Thanks for the elimination info. If thought of tryong strawberry ou tonher skin just to see becuase we have strawberries growing our garden and its sa sad she cant eat them. Last time she had them she was up all night and covered in a rash that could have been either from corn syrup or starwberries so Ive been hesitant. I just want her to heal and be ok and that trumps gorgeous organic strawberries in the backyard!

maryamb: thanks for sharing your childs experience! So does 12 allergies mean leaky gut? I appreciate the acknowledgement that we might just reach 95% of the corn even with very careful tabs on things.

Has anyone found eliminating xanthum gum made a big difference? I guess I should call Bobs red mill and ask. Im so used to allergens being on labels now- I read everything on that label and tehre was nothing about conr.

Thanks again so much fro all your help, Mamas!

[scsigrl]

*MY* theory is that yes, leaky gut has a lot to do with it.  It is a key in Celiac (one of the 4 things needed) and I think allergies are much the same in the way the proteins get through into the blood to cause an issue.  Again, this is just what *I* think!

Do you have any issues with nuts/peanuts?  If you are looking at Bob's Red Mill Gluten Free, it is not suggested (per BRM) that you use it if you have nut issues.  Also, I think Hain is not helpful when asked for cross contamination issues.

As for removing xalthum, it really depends.  My corn allergic DS was fine with it.  Others are not.

[jewellz]

My son was tested for allergies. He had the scratch test and then the blood test but by then the foods were already removed from his diet since he was 3 months old.  BF till 9 months then allergy ff. He's now 30 months old. It was so hard on him-had to hold him so he wouldn't try to scratch-not fun doing that when his sister was reacting to my breastmilk at the same time-people prob thought I was torturing my kids in the doctor's office with her screaming and him crying. Both the scratch and blood came back negative. But I know that he reacted to 3 of the 4 we tested. We tested for gluten, dairy, soy and eggs. Gluten will never go back in our diets, but we have reintroduced dairy with no problems. Eggs are still giving him problems but the symptoms are less severe and we will reintroduce it again later.

We never had problem with nuts so wouldn't know. Could possibly have problems with corn, don't know yet.

We did full avoidance then eventually introduced the offenders mostly by accident and decided to go from there depending on reaction. We will introduce the foods later based on the fact that I believe they are intolerances and not true allergies.

My youngest is now 13 months old. Breastfeed still-exclusively til 6 months but table food wasn't into her diet until 9 months or so. Now she still on-demand breastfed but eats some table food. Gluten-including oats is out of our diet-mine and all the kiddos, hubby needs to remove it but won't. Now for her-I actually took out dairy in my diet when I was 5 months pregnant and still haven't had it. I took out eggs completely just before she was born and even before she was born since 8 months pregnant I had severely limited it to a certain baked good couple times a week. I've only had 1 egg since then. But I believe removing the known offenders our family has had-except for gluten, that will never be back in our diet-before she was born helped tons because my son took over 24 months to get over his dairy intolerance and I can give her cheese and other dairy products with no problems now.

I believe I have leaky gut and on a special diet to heal that. Hoping that the next kiddos we have will not react to my breastmilk and I can have a peaceful newborn period-not the screaming up all night til 5am periods with the last 3.

Anyway hope that helps.

[SweetSilver]

I'll post the recipe on a new thread when I have a minute.  Look for it here.  

If gluten really is a trouble, french fries are a source of cross-contamination at restaurants.  One locally-owned burger place near us will reserve a fresh fryer for you if you have lunch early and call ahead.  The trouble is that the oil is used to deep fry breaded chicken and fish and the like.

I've been hearing a lot about leaky gut and afraid I'm ignorant about that.  I'd love to know more.  Both my daughter and I have have scads of allergies.  

Originally Posted by gracemamma 

sweet silver- thanks fro the baking powder recommendation- Ive been doing baking soda nd cream of tartar but will try to find the Hain one since we use it for buckwheat pankcakes, Gf scones and the like. Love the oat biscuits idea- if you feel like sharing the recipe, we'd love to try this!  

[mytwomonkies]

Be cautious with the buckwheat, we have tried several different buckwheat flours and even pocono cream of buckwheat and have had gluten like reactions every time. Some may have been cross contamination but should not have been the case with the cream of buckwheat. I've heard of people who are gluten intolerant cross reacting to buckwheat.

Originally Posted by gracemamma 

sweet silver- thanks fro the baking powder recommendation- Ive been doing baking soda nd cream of tartar but will try to find the Hain one since we use it for buckwheat pankcakes, Gf scones and the like.

[SweetSilver]

My daughter also gets a similar reaction to buckwheat as she does to rice: most notably bad headaches.  We had wanted so much for her to have noodles and she finally accepted the 100% buckwheat soba noodles.  It was one of the few times she cried over food when we finally had to say "no".