HELP PLEASE!! DAUGHTER JUST DIAGNOSED WITH DAIRY, PEANUT, RICE, AND CORN ALLERGY

[AZsMommy]

Hi All--

I'm completely new to this allergy thing....sort of. My oldest daughter had a rough time with milk when she was a baby, but recently she started having HORRIBLE (doubling over) stomach pains and constipation. We went back to her GI for a check up and they did the blood test that tests for allergens and an X-Ray to check for obstruction. Well, they called yesterday and said that she's allergic to dairy, peanuts, rice, and corn and that we needed to remove them all from her diet immediately. They said she couldn't even have these things cooked into something else. They prescribed a few EPI pens and that was that. I have SOO many questions. Every label that I check has these items. What in the WORLD is my already picky 4 year old supposed to eat? Any guidance would be greatly appreciated.

Thank you!

[CMdeux]

Okay-- well, first, you have my profound sympathies.  This is never easy, and with a child who is older and already a picky eater, it definitely is not an easy road.

Now-- the good news (and hear me out):

it's REALLY unlikely that you're going to have to live like this for very long, because some of the things on that list are SUPER unlikely to actually be allergens for anyone, and based on testing alone.... meh.  Probably not.  What KIND of "blood testing" was done to determine that all of those things were allergens?  Was anything tested actually negative?  Please know that the rate of false positives is extremely high with blood testing.  Also-- constipation is simply NOT a symptom of IgE-mediated food allergy.

With the symptoms that you describe, I'm wondering if your DD has been evaluated for some other disorders such as celiac. 

Have you kept a food diary at all?  If you haven't, please start-- be VERY scrupulous about recording brand names and maybe even taking photos with a cell phone of labels and lot numbers just in case. 


It's very very unlikely that your DD has suddenly developed allergies to rice and corn.  VERY unlikely.  Few people even with horrifically long lists of food allergens that have nearly killed them are allergic to those things.  It is so unlikely, in fact, that I strongly recommend that you get her an appointment ASAP with a board-certified allergist who specializes in pediatric food allergy-- not gastroenterology, not environmental allergies, not asthma-- FOOD ALLERGY.


Unfortunately, it's all together possible that she's developed a food allergy.  But the most likely culprits are peanuts, tree nuts, and fish/shellfish, given her age and the history that you've described.

Sunflower Seed butter is a great peanut butter alternative, by the way.    Corn is in so much processed food that you're going to have a really hard time eliminating it entirely, I'm afraid.  I know a few people who have had to do that, and I wouldn't wish it on anyone.

The bad news is that she may really be pretty reactive to any number of things right now-- this can happen to people when their "allergy cup" is very full from repeated provocation.  It takes time-- sometimes a few months-- before the immune system "calms" enough to tolerate things that aren't really allergens.  I don't know if that analogy makes sense-- it's as though your immune system is a teacup, and provoking it with exposures fills it up a bit... which eventually overflows the cup-- and until it can "empty" again, EVERYTHING can cause overflows.


Please be sure to take a look at when to use epinephrine, and ask your new ALLERGY doc for an action plan.  Make sure that your child isn't left with others who don't know how to help her during a life-threatening reaction, and can recognize when one is in progress. 

Welcome-- I hope that you find us helpful and that we can support you as you adjust.  You're not alone.   

[rebekahc]

ETA:  I see CM beat me to a response - sorry if anything's repetitive!

Hi AZsMommy, I'm sorry your daughter is suffering!

You need to see a board certified allergist (preferably a pediatric one with lots of food allergy experience).  Food allergy testing is only about 50% accurate; an allergist will be able to help you narrow down which (if any) food is causing your daughter's symptoms.  He or she will also be able to give you a plan to follow for when to use the EpiPen.  Here's a chart that shows symptoms.  http://the-clarkes.org/stuff/ana.html The basic rule of thumb for the use of Epi would be anything above Grade 1 or any time more than two body systems are involved.

Until you can get in to see an allergist, feed your daughter whole/single ingredient foods.  Here's a post I made recently in another thread that may be helpful to you.  Re: SOY, WHEAT, CORN ALLERGY - WHAT TO EAT!)

I would also keep a food diary to help you isolate a cause when/if your daughter has any symptoms.

Keep us posted!

[CMdeux]

Some ideas for feeding your daughter:

Starches/carbs:

Whole wheat flour-- preferably from a major brand like Gold Medal, since they don't mill "alternative" flours which will contain corn/rice/nuts.  You may need to make your own bread if she is a sandwich eater (I'm sorry-- I know that seems potentially overwhelming-- but it isn't so bad once you make it a habit to do it each weekend).

Potatoes-- buy whole, not processed

pastas-- but check to make sure that they don't contain anything but semolina flour-- and know that some may use cornstarch in processing.

Proteins:

eggs, meat-- as unprocessed as you can manage  (NO lunchmeats, no to deli items)  Personally, I'd avoid fish for now until you figure out if you're dealing with emergent IgE-mediated food allergy, as it's a common trigger.

Fats:

Olive oil, coconut oils

Fruits:

Whole, unprocessed-- cut up apples, and shake them with a TINY bit of lemon juice if you don't want them to brown; grapes, bananas, oranges, etc. etc.

Vegetables:

Dark leafy greens, if you can get her to eat them-- because they'll help fill the bill for calcium. 
Carrots
bell peppers
broccoli
cauliflower



For now, I wouldn't be too concerned with supplements to make sure that she's getting ALL vitamin/minerals met, since you're new enough to avoidance that vetting supplements is likely to be a nightmare with corn/rice in the mix.  But know that this kind of avoidance WILL leave her possibly compromised if you have to do it long term, and in that case, you're going to (eventually) want to explore getting those needs met.

Anything that comes out of a bag, box, or can is probably off-limits for now.  Yes, this really sucks.  A lot.  I'm sorry, but you'll spend WAY more time and energy figuring out how to do those processed foods than you will in just going with the flow there and cooking single-ingredient foods from scratch.   (Trust me, I know).

  Know that this can be done, and that it gets better. 

[lakeswimr]

You need a better doctor.  The symptoms you mentioned do not sound like epi pen type of symptoms but do sound like symptoms that could indicate many GI conditions, some quite serious. 

Skin and blood testing for allergies has a very high false positive rate and by itself can't be used to diagnose a food allergy.  It has to be combined with reaction history. 

What you describe sounds more in the Celiac realm of things but could be many other GI conditions.  I would seek a second opinion GI doctor who is more skilled and it might not hurt to see a good pediatric allergist, too even though it does not sound like IgE food allergies.

Meanwhile I would avoid those foods and see if it makes a positive difference.  Corns and rice are very rare allergens in the USA, especially rice.  Corn is in most all processed foods so if you are going to avoid it you would have to make all her foods or just about all from scratch  It and rice can be in foods and not listed on the label. 

[Tyra]

Thank you ALL for taking the time to reply.

She was given the ELISA blood test to test for allergies. I should mention that these symptoms aren't new. She's had a VERY difficult time using the bathroom since she was little, but all of her pediatricians (yes, I reached out for 2nd opinions) would chalk it up to her beginning to eat solids and would suggest incorporating more water into her diet; the normal stuff. She has ALWAYS complained about her stomach hurting right after she eats, and almost always has the sensation to use the bathroom immediately after eating, but again...I just thought this was because she had a harder time using the bathroom.

Finally, after she started to restrict herself from eating (because she knew how badly her stomach was going to hurt) I just got the feeling that it was more than just the usual constipation. She hasn't had a "normal" bowel movement in about 10 days. When they checked her  X-Rays, they saw no obstruction. They also checked her for celiac disease and that was negative.

Luckily, she does like fruit and water and grilled chicken. Right now, that's about all I can give her! She hates eggs. I found a few snacks at the store yesterday that didn't contain any of her alleged allergens, and she seems to like them okay for now.

We have been to a pediatric allergist, and an ENT (she's had tubes put in, removed, adenoids removed twice, nose cauterized, tonsillectomy, and an ear drum repair). The pediatric allergist tested her for mostly for tree nuts, milk, and fish. She didn't react to milk, but I'm not sure why.

We meet with the nutritionist on Monday so that we can go over the lab results. I'm anxious to see what the numbers say. At this point I just don't know. I feel like we've tried EVERYTHING and all I want for her is relief (and to know what is actually causing this)! She often times does complain of headache or feeling light headed. She's generally tired and achy. She often complains of an "itchy" throat and coughs like you wouldn't believe. I'm not sure what's going on!

[AZsMommy]

Thank you ALL for taking the time to reply.

She was given the ELISA blood test to test for allergies. I should mention that these symptoms aren't new. She's had a VERY difficult time using the bathroom since she was little, but all of her pediatricians (yes, I reached out for 2nd opinions) would chalk it up to her beginning to eat solids and would suggest incorporating more water into her diet; the normal stuff. She has ALWAYS complained about her stomach hurting right after she eats, and almost always has the sensation to use the bathroom immediately after eating, but again...I just thought this was because she had a harder time using the bathroom.

Finally, after she started to restrict herself from eating (because she knew how badly her stomach was going to hurt) I just got the feeling that it was more than just the usual constipation. She hasn't had a "normal" bowel movement in about 10 days. When they checked her  X-Rays, they saw no obstruction. They also checked her for celiac disease and that was negative.

Luckily, she does like fruit and water and grilled chicken. Right now, that's about all I can give her! She hates eggs. I found a few snacks at the store yesterday that didn't contain any of her alleged allergens, and she seems to like them okay for now.

We have been to a pediatric allergist, and an ENT (she's had tubes put in, removed, adenoids removed twice, nose cauterized, tonsillectomy, and an ear drum repair). The pediatric allergist tested her for mostly for tree nuts, milk, and fish. She didn't react to milk, but I'm not sure why.

We meet with the nutritionist on Monday so that we can go over the lab results. I'm anxious to see what the numbers say. At this point I just don't know. I feel like we've tried EVERYTHING and all I want for her is relief (and to know what is actually causing this)! She often times does complain of headache or feeling light headed. She's generally tired and achy. She often complains of an "itchy" throat and coughs like you wouldn't believe. I'm not sure what's going on!

[GoingNuts]

AZ's Mommy, welcome!

I really don't have much to add beyond the advice you've already been given; it's very complete!  But I would consult a pediatric allergist again, even though you've already been to one, to review the results and see what they have to say.  I don't know where you are, but if you are comfortable giving us an approximate location we may be able to steer you to one of the "trusted" pediatric allergy gurus.  Sometimes when you have a tough, confusing situation like this, it's worth a trip.

I hope you can get some answers for your DD soon.  It's so hard to see our kids in pain. 

[rebekahc]

The ELISA test (and all IgG testing) is not recommended for diagnosing food allergies (or even food intolerances as it's marketed).  Here's a link to an article (the article is good, but ignore the advertising!) that explains why: http://www.realnatural.org/elisa-igg-testing-for-food-intolerances-proves-inaccurate/

Food allergies are IgE regulated immune responses.  The fact that your doctor gave you an EpiPen based on IgG testing shows that he doesn't understand the mechanism of food allergy - an EpiPen will not help an IgG reaction (if such a reaction even exists) it will only help an IgE mediated reaction.

[CMdeux]

Just as an addendum, however-- ELISA and RAST, while nominally marketed by physicians as different creatures...  effectively are slightly different terminology for nearly identical analytical methods-- so it IS possible to use or refer to RAST (radio-allergo-sorbent test) as a specialized form of ELISA (enzyme-linked immunosorbent assay).

Just wanted that here for accuracy.

EITHER thing could refer to IgG, IgE, IgA, etc. etc.


This is where a food allergy specialist should be able to help you sort things out pretty well.  Just out of curiosity, when your child was tested for celiac, was she regularly consuming gluten?  Or were you already restricting her diet at that point in an effort to find something that helped her symptoms?  The reason that I ask is that usually, celiac can ONLY be diagnosed in a person that is regularly producing antibodies to gluten via continuous exposure.

Another thing that makes me think that you TRULY need a guru is the possibility of other allergenic disorders-- immediate-type hypersensitivity (IgE-mediated food allergy, which can be life-threatening) may not be very consistent with the symptoms that you've described, but there are other disorders which most emphatically ARE.  (Like the eosinophilias).



I really really hope that you can get some answers.  I agree with Going Nuts-- it's really hard to see our kids suffering. 

[lakeswimr]

I highly recommend you find a new GI doctor.  Elisa testing is not valid or reliable.  And even if it has been IgE testing, which I assume it had been, that would not be a way to diagnose a food allergy by itself.  What you describe sounds like a GI condition, not a food allergy. The GI doctor you saw does not sound up to date.  I would see a better one.  good luck!

[GoingNuts]

When you say celiac was negative, was your DD scoped, or did they just do a blood test?