Pediatric Allergist said allergy tests don't work... - Mothering Forums

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#1 of 18 Old 03-24-2012, 08:41 PM - Thread Starter
 
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After holding out as long as possible from going to the pediatric allergist so that the test would be more helpful, we finally got an appt. only to be told that with our son's type of allergy symptoms, blood and mucus in stool and chronic congestion, the tests don't work. How can this be? How come I have read so many other mothers with kids who have similar symptoms and they are tested and told spec. food allergies? She said maybe he will grow out of them by age 4 and to just keep doing trial and error and his mucus was not really a bad sign and may never go away. So frustrated and confused after hoping this would help and waiting for over a year. What do you think?

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#2 of 18 Old 03-25-2012, 07:24 AM
 
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When they symptoms are mostly GI, it is more likely an intolerance.  I would assume that is why the Dr. said that and it's true.  Most allergist only test for IgE allergies (the type that's associated with anaphylaxis, hives, swelling of the face,lips, throat, breathing difficulties etc.)

 

 

Have you kept a detailed food log to see if you can isolate the problem food?

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#3 of 18 Old 03-25-2012, 08:01 AM
 
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Yep, my daughter only has one true allergy - latex - that she tested positive for on a blood test. She doesn't test positive for the cross-reactives like banana, avocado, etc... that she definitely reacts to. She has really bad salicylic acid issues and there is no test for that; we tested her for some of her worst offenders just to make sure and they were negative for allergy. She also has gluten issues which is a whole different test and we opted not to have it done since it was obvious she was reacting plus myself and my other girls react too.

 

I think the mucous tends to be a gut issue (???) so in addition to doing an elimination diet to remove the offender(s) you might look at the threads here about gut healing as well.

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#4 of 18 Old 03-25-2012, 08:34 AM
 
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My boys tested neg to everything at 4 and 5 but pos to everything tested for at 7 and 9.

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#5 of 18 Old 03-25-2012, 11:15 AM - Thread Starter
 
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I have been on modified elimination diet for a year now and have taken daily notes on food, behavior and stool. But how is it possible that he is allergic/intolerant to so many things?

 

Possibily Allergic/Sensitive/Intolerant to:
Through breastmilk:
Blood after couple days of eating it:
avocado
berries
eggs
wheat
corn
mango
buckwheat
sorghum flour
sweet potato? or the brown sugar?
arrowroot flour
sugar snap peas (were not washed apparently and not organic)
Poss. allergic to: had mucus or extra fussy/gassy:
dairy: fishy smelling mucus in stool
soy
raw apples
maple flavoring
Poss. reaction when he ate it:
carrots: mucus
brown rice pasta made into mush: extremely fussy night. Lots of waking. (could have been from teething?)

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#6 of 18 Old 03-25-2012, 11:36 AM
 
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Sometimes the issue is not so much the specific food, but rather the makeup of food or food group so to speak. My daughter's big issue is the salycilic acids which are present in varying amounts in different foods and she can tolerate very small amounts, but if her 'bucket' gets filled she is in trouble. So her diet is made up primarly of foods with negligible or low amounts, unprocessed meats, dairy without fillers, and a fe grains and veggies plus 2 fruits. Very occasionally I will aloow hera small portion of a higher level food. If she sneaks food and eats a lot of it or I screw up she has very painful rashes all over her body. There seem to be a lot of nutritional supplementing that we could do for her to help heal her gut and get her to a point where she can tolerate these things more often, but right now they are not as financially feasible as I'd like. But I know there are some mommas on here who have made great improvements, if not totally fixing it. Nothing is jumping at me from your list I'm afraid but maybe someone else has an idea. I would have been completely clueless when we started this 3 years ago if not for their help. I will try to post a link to the healing gut stuff later.

 

eta...typing on my tablet,sorry for spelling.

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#7 of 18 Old 03-27-2012, 08:24 AM
 
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The tests won't work if it's an intolerance.  My daughter, with allergies, did have mucous in her stools that cleared up finally when she was dxed with a wheat allergy and we eliminated it.*  So, these same symptoms can indeed be a sign of an allergy.  The difference is that allergies are going to come with other symptoms as well (or instead, of course).  

 

While their advice is good, I am not sure why they are refusing to test?  Even if you know the test might be inconclusive?  Perhaps they don't want you going overboard and self-interpreting the results?  (A distinct possibility.  My allergist doesn't offer up the results of the test, though I could ask for them, because even numbers for positive results are still up to interpretation.)  They are right about outgrowing allergies, especially dairy.  Many allergists might prefer to wait, and they all want to see as much variety in a child's diet as possible (another reason for not wanting parents to overreact to test results.)

 

In the end, despite what you find on the test, you are going to be told to do an elimination diet and challenges to confirm or refute the test results.  So, you end up right back where you are anyhow.

 

 

*She has a severe dairy allergy, which was why we were at the allergists.  Wheat turned out numbers almost as bad as dairy.   Only when we challenged wheat did we spot the symptoms: swelling and redness around the mouth, torrential rages, and the mucous.  She was past diaper age at the time, but even being dairy-free we had to use Aquaphor religiously to keep her bum from being red.  (Yeah, I admit I was a bit oblivious.  She was always like this, I didn't think it was anything but normal.)  I mention all this to explain why we went to the allergists in the first place, and some of the other issues that arise with allergies vs. intolerances.


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#8 of 18 Old 03-28-2012, 01:46 PM - Thread Starter
 
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Thank you for responding. Anybody's experience with allergies/intolerance is helpful. This is so frustrating and confusing. The allergist told us to be trying lots of foods but then she said to hold off on grains and possibly meat until he is 18 months. Have you ever been told that? Then she said that the new theory is to not hold off on any foods--even peanuts or eggs at any age. Lots of contradictory information.

 

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#9 of 18 Old 03-28-2012, 02:27 PM
 
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#10 of 18 Old 03-28-2012, 02:31 PM
 
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I know there are some momma's with kids who can't tolerate meat but for us it is one of the main foods she can have. The grains... there are some who hold off on grains because of the thought that babies don't create the enzymes necessary for their guts to process them until around 18 months. I really don't like them as a first food and never did give my babies much of them. If you are already dealing with some gut/intolerance issues, it is probably a good idea to hold off a little while, they don't *need* them.

 

ETA: Not holding off on foods... they used tell moms not to give certain foods to babies because they would increase the risk of allergies, but now they find the opposite is actually true. But when babies are born with gut issues, intolerances, allergies already the study doesn't apply to them. It was purely about *preventing* allergies.

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#11 of 18 Old 03-28-2012, 04:39 PM
 
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Quote:
Originally Posted by fruitfulmomma View Post

 

ETA: Not holding off on foods... they used tell moms not to give certain foods to babies because they would increase the risk of allergies, but now they find the opposite is actually true. But when babies are born with gut issues, intolerances, allergies already the study doesn't apply to them. It was purely about *preventing* allergies.


This is the reason why my dairy-allergic daughter was told to stay off nuts, peanuts, white fish and shellfish.  She already showed signs of having severe allergies, and this group of foods are the most likely to cause anaphylactic reactions.  Luckily, now that she passed her in-office peanut challenge she has been cleared to challenge the others at home.

 


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#12 of 18 Old 04-02-2012, 11:05 AM - Thread Starter
 
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Thank you so much for all the helpful links. So much information. Wish I had found this website a year ago when all of this started. Guess I will have to just keep educating myself and trying one food at a time. Thanks again.

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#13 of 18 Old 05-11-2012, 12:09 AM
 
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Originally Posted by Sarmom View Post

I have been on modified elimination diet for a year now and have taken daily notes on food, behavior and stool. But how is it possible that he is allergic/intolerant to so many things?

 

Possibily Allergic/Sensitive/Intolerant to:
Through breastmilk:
Blood after couple days of eating it:
avocado
berries
eggs
wheat
corn
mango
buckwheat
sorghum flour
sweet potato? or the brown sugar?
arrowroot flour
sugar snap peas (were not washed apparently and not organic)
Poss. allergic to: had mucus or extra fussy/gassy:
dairy: fishy smelling mucus in stool
soy
raw apples
maple flavoring
Poss. reaction when he ate it:
carrots: mucus
brown rice pasta made into mush: extremely fussy night. Lots of waking. (could have been from teething?)

 

I react to an odd ball assortment of foods (including Avian, Celery, Mustard/Cabbage family, Mace, Sage). Sometimes, those with odd ball diet restrictions have cross-reactivity reactions due to tree pollen of some kind (Rose and Birch trees being the most common ones).  Other times there is a rare connection: EE/EGID, G6PD, Salicylate intolerance, glutamate intolerance or Gluten connection.

 

In your case, Cereal family is found with the Corn, Rice, Wheat and Sorghum issue.

Dairy, Eggs, Soy, Wheat: Common Allergies, no surprise here. Soy and Dairy can be hidden in anything. Harder to avoid.

Corn: Becoming more common. Found in odd places - google corn avoidance list.  Really hard to avoid.

Rice: Does white rice cause issues too? If not, then its the bran on the brown rice causing issues.

 

Some foods on your list falls under the "Cross-reactivity with Latex" category:

Apples, Avocado, Buckwheat, Carrots and Mango.

 

Arrowroot is often Tapioca (Spurge family), so I would expect issues with Tapioca too.

Maple Flavoring: Could alcohol be in the flavoring, like it is with vanilla? However, I would expect a reaction to pickles.

 

So far, I'm not able to make a connection with his avoidance list, and the lists I have studied.

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#14 of 18 Old 05-11-2012, 01:19 PM - Thread Starter
 
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Thank you so much for taking the time to read this long list and making some helpful connections for me. I knew avocado was part of the "latex allergy family" but I didn't know about the others. Isn't banana also? I have purposely not eaten banana this whole time thinking that family allergy maybe a possibility.

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#15 of 18 Old 05-11-2012, 06:27 PM
 
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hug2.gifHugs! It's so hard trying to figure this stuff out!

 

Do you have any allergies? Have you ever been tested? My son used to have those bloody mucousy poops too.  I cut out dairy, soy, and gluten completely for a month, and the blood and mucous stopped entirely. And he started sleeping.  And I felt much, much better (not just because of the sleep either!).  It took an entire month of excluding dairy, and a couple of weeks with the gluten and soy for the change to happen, but when it did it was quick. 

 

We are still having some issues, and I decided to have an allergy/intolerance test done on myself since I saw such an improvement with those changes, I figured that his lingering issues may actually be him reacting to things in my milk.  Like the others have said, the results aren't really conclusive, but it gave me a place to start.  A couple of things proved helpful, but I still don't have the entire picture.  They also didn't want to test my son at this point (12 months at the time), since his reactions are relatively mild.

 

Maybe instead of the rotation diet you could try eliminating groups of foods for longer to see if there is a more obvious effect? My son's reaction would gear up to a peak, then subside, and each food had a different "profile" so to speak, so I can see a rotation diet being hard to weed out details.  FYI, dairy will take 10-14 days to get out of your system and then 10-14 to get out of your son's, so make sure you take that into consideration if you stop eating dairy.  And also, expect crankiness while you clear out your DS's system of the allergens, they tend to have an almost addictive quality...

 

Good luck!


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#16 of 18 Old 05-12-2012, 01:00 PM - Thread Starter
 
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Thank you so much for the sympathy and information. What exactly is the difference between rotation diet and elimination diet?

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#17 of 18 Old 05-12-2012, 01:32 PM
 
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Yes about the banana and latex...dd vomited when I ate them, same as avocado. We pretty much stear clear of the tropical fruits.

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#18 of 18 Old 05-14-2012, 07:21 AM
 
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Quote:
Originally Posted by Sarmom View Post

Thank you so much for the sympathy and information. What exactly is the difference between rotation diet and elimination diet?

Rotation diet is when you rotate foods every four days or so, and the theory is that you will see symptoms rotate the same way so that you can figure out which foods are causing problems (I think), and this way you are still able to eat a wide variety of foods.  An elimination diet would totally eliminate foods for a certain amount of time, and then you would challenge each food separately to get a clear indicator of which food(s) are trouble.

 

The problem with the rotation diet is that some foods take a few days to cause a reaction, so it may be difficult to pin point which foods are trouble, especially if there are issues with multiple foods. And you may or may not ever be asymptomatic, since some things take a while to get out of your system. The problem with the elimination diet is that if you don't eliminate every problem food, you will never be asymptomatic, and a total elimination diet is really hard to do. 

 

Unfortunately, there is no easy way to do this.  A lot of people try eliminating the top 8 or top 10 allergenic foods, and reintroduce one at a time.  I started with dairy (and soy since the protein looks so similar to casein, many people have to stay away from both) and gluten, since they are both known to be difficult for most people to digest.  The hardest part is that these (and corn especially) are in sooo many foods in small amounts and aren't necessarily on the label, and you really do have to eliminate even trace amounts to be sure if each particular food is an issue.  If you are able to cook everything from scratch your job will be so much easier in terms of figuring out what the problems are. 


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