Food allery question-not disney related

[lmm2]

Hi, my daughter has previously been blood tested for foods and was positive for milk, egg whites, beef and casein. Today she had skin testing and the milk and beef did not show up. Instead a bunch of other things that she eats regularly and has not seemed to have issues with did. Pork was a 5. She eats a ham wrap in her lunch most days. Almonds, pecans, oranges, pineapple and some other along with environmental things. I am wondering if I should request the blood test also to see how the 2 compare. The dr was out today so we only saw the PA. She was confused based on the last testing and what we report so just said bit to change anything for now. Dr is going to call me this week. We also leave next week for disney. Any suggestions or similar stories would be helpful.

 

[spacecanada]

Your allergist should review test results with you instead of giving you the results without interpretation. The results are meaningless without proper interpretation by an allergist, preferably one that specialises in food allergies (vs environmental allergies). The true test of allergies is reaction history. If someone can eat a regular dose of a food without any allergic symptoms, like ham sandwiches every day, they are not allergic to that food. (There are very few exceptions to this.) Please talk to your allergist before making any conclusions. If your daughter does have food allergies, be sure to get an action plan and (at least) two epinephrine autoinjectors to keep with her at all times. Even if her reaction history is mild, that could change any time, without warning.

I test negative on both the blood test and skin test for nuts and peanuts and I'm severely allergic to both, with traces of either ending in EpiPen(s) and a 911 call. The tests aren't perfect.

In the meantime, check out some reputable sources of allergy information:
Allergic Living (allergicliving.com)
FAAN (foodallergy.org)
Anaphylaxis Canada (anaphylaxis.ca)

PM me if you like.

 

[PinkBudgie]

I have a severe fish allergy however all of my blood tests came back as negative. Even the teeniest tiniest little crumb of fish causes a reaction. I just don't understand the point of a test when the results are so unreliable. I may or may not have a shellfish allergy too. The blood test came back negative but I'm afraid to even have a food challenge at the doctor's office to check.
I found a local allergy group on Facebook and that has been helpful to me. You might also want to check for similar groups in your area.

 

[geek+nerd]

After almost nine months of debilitating GI issues (severe nausea, vomiting, stomach pain, inability to eat) with no clear diagnosis, at the end of April, my GI doc put me on a wheat, soy and dairy free diet along with low FODMAPs. If we didn't see improvement from that, it was on to a liquid diet and then on to a feeding tube. She also sent me to an allergist.

I kept a detailed food journal, tracking symptoms for two weeks, and blood tests were done. The blood work all came back fine. However, the allergist said that I am to continue with no wheat, soy and dairy and low FODMAP based on my symptoms. She said, "We treat symptoms, not blood work." She also said she wouldn't bother with skin tests because they are so unreliable. A food challenge isn't appropriate for me because my symptoms don't often appear for a few hours after eating (with the exception of high fructose corn syrup; that sucker cause pain and retching within about 15 minutes of ingestion).

My point is, treat the symptoms not the result of the test. Good luck'

 

[JPDMomma]

My oldest son tests positive to so many things! He does have food allergies, but some of the things he tests positive to, he doesn't react from. And, the scariest 2 - the ones that require and epi pen for him - don't even show up on the test.

Our allergist says, "Reactions trump results" so if she's eating ham with no issues (and I mean none - no itching. no tummy trouble, nothing) - it's probably fine to keep giving it to her. If there are things she has reacted to, I would keep avoiding them.

 

[MSSANDRA]

Just remember that all allergy reactions are not your typical hives, itching or breathing issues. Reactions can be stomach issue (even hours after eating), joint swelling, head aches and other vague symptoms. Test can be wrong, but before I let her eat those food, I would talk to her doctor....preferably before the trip. My DS is a very classic allergy test/react kid, but my sister has VERY weird test results/ reactions that are much scarier and harder to deal with. Carry two pens at all times but carry extra for travel. For flights, our doctor recommends 1 pen for every 15 minutes away from medical help.

 

[mistysue]

May I ask why you got the testing done? It might help put this into perspective, but in our experience the tests are essentially worthless unless you are looking for clues to what the problem is. Did you do the testing because of a problem? Or was it just random?

My son has many allergies. Every single one shows up as a "level 2" or lower on blood tests- a level that many people pass off as being essentially negative. Some of them show up in skin prick tests, some don't. He has items that show up on both, one or the other and neither that he can't have. A few weeks ago we made a gingerbread house with the frosting that came in the box. He got icing containing egg on his hand. His hand swelled up, his skin cracked open and started bleeding and his eyes got all puffy. I wished the receptionist from the pediatrician, the one who told me over the phone that the egg results were "negative- no allergy" because she thought a "2" didn't matter without even asking the doctor, could have seen it.
Most of the things DS is allergic to he did eat for about a year while we couldn't figure out why our child had terrible eczema, rashes, diarrhea and was sickly all the time. Now we can go out in public without people thinking we are the jerks trying to give their kids the flu.

The best explanation I've heard for blood tests is that the result number is like a predictor of how likely the person is to have an allergy, but does not predict how strong that reaction will be or tell you anything concrete. So I could have a .1 with an effective 0% chance of allergy and you could have a 150 with a 99.9% chance- and I might have the allergy and you don't. You are just lucky and I'm not.
The skin prick test is a similar concept, it tells you only if you have a skin reaction. My son has a negative skin test to dairy, but gets hives and some significant digestive issues if he has it.

If you were searching for answers to a health issue, I would try avoiding the new allergens that showed reactions and see if it helps. Maybe swap turkey for ham or whatever. If there wasn't a problem, I would be inclined to not care what the test says, but ignore me if your doctor says different.

 

[lmm2]

Thanks for the answers. We originally had her tested when she was 2 (she is now 4) because she was vomiting everytime she had dairy products. She has had issues with milk since birth. She could not take a milk based formula so was switched to soy. Found out she had a soy allergy also and had to go through all of the "fancy" formulas before settling on the sensitive kind. Once she was old enough, she was able to drink regular milk and have yogurt until she was almost 2. This is when the daily reactions started. We then were able to switch to lactose free for a while before she started having troubles again. Her reaction is either vomiting or diarrhea. About 14 months ago she started having diarrhea multiple times for about 3 months. Our pedi did several tests and wanted us to go to the gasto dr but since it took 2 months to get an apt, I decided to go back to the allergist to test again. This was the 2nd blood test and when the casein showed up. We immediately took milk, eggs and casein in any form out of her diet and she was back to her normal self. By the time the appt for the gastro came around she was fine and he had nothing to tell us except keep on with the food avoidance. Fast forward to the past 4 months and she is again having bouts of diarrhea. Have done the best I can to make sure she is not eating the 3 things so wanted to check if there was anything else. She starts Kinder in the fall and really want to have some answers as I don't want to send her off and have her have this at school. When she has the diarrhea it is uncontrollable and can not make it to the bathroom. I really don't think that the new foods that showed up with the skin test are the culprit so I am at a loss right now.

 

[mistysue]

The quickest way to find out would be to take the new items out of her diet then. You basically have until fall to figure it out. If she stops eating those items and it stops, you now have a list to choose from. If it were my child I would do exactly what we did. We took EVERYTHING that gave any result out of his diet. We then picked the items he had been eating the most frequently and after a few months, fed him one of them, waited a few weeks to see if anything popped up, then tried the next. We narrowed things down a good bit that way. You should of course run that idea by your doctor, but seeing as how she has been eating those things, it's probably not going to be an issue to test them. I would test the pork first since that seems popular, so you know if you can add that back in or not. Also important to know is that reactions can be immediate or can take days to happen. This is why you don't sit down and test everything within a day or a week. It is going to take some time.
If it's too difficult to cut a bunch of things out at once, you could eliminate items one by one, but you run the risk of it being multiple items so you would never find the answer. For example, if three new items are causing her trouble an you eliminate 2 of the 3- she still has a problem and you are going to erroneously think you have found that it is not the 2 you eliminated.

 

[DCDisney]

She's eating pork every day and having dia every day and shows as highly allergic on the skin test to pork? Why not eliminate it? I have a number of food allergies and most of them I get upset stomach, dia, stomach pains, and rashes. It's hard to tell what's what with those because the reaction isn't always immediate. My blood and skin tests don't agree either but if I avoid everything positive on both I don't get sick at all any more. My allergist had me start avoiding all and then could start adding back things one at a time starting with the lowest numbers first. I can handle most of them (fruits and veggies) but only cooked.

 

[stackyallred]

On paper, I am allergic to 4 foods and intolerant to over 40 foods. Then there is a list of foods I test "safe" to that cause me reactions. My reactions are ALL over the place from severe anxiety/behavioral changes to stomach cramps to skin issues to extreme exhaustion for days, etc... If it were me (I also have a 4 year old with allergies), I'd avoid anything that shows up on paper until she is old enough to really understand all the ways allergic reactions can manifest themselves. It could possibly seem to your eyes like she isn't reacting but maybe she is, just in a less typical or obvious way. I suffered in misery through childhood all the way through my late twenties with allergic reactions that didn't look typical while eating all the problematic foods I wish I had known to avoid. Now I avoid anything (whether its a test result on paper or not) that might cause a reaction. Best of luck to you in finding what works best for her!

 

[eliz603]

I have been in the food allergy world for a year thanks to my 2 year old. Wheat products cause eczema (his cheeks are almost purple within an hour). Tree nuts are avoided after I gave him a nutrition bar with only cashews and dates, and he broke out in hives. He never had peanut issues until December. We avoided them after the tree nut issue, but a family member have him chips that were simply potatoes, salt and peanut oil. We almost had to pull out the epi pen, but the Benadryl kicked in.

And with all that, his skin tests were negative except for Brazil nut, and his blood tests were negative. The doctor was flabbergasted, says he hopes it's developmental.

When he turns 3, we'll go in for the gold standard - food challenges. Has your LO gone through this? After doing my research, I can tell you what the others have also mentioned. The scratch/blood tests are not 100%. A high or low result doesn't indicate severity. I can also tell you that testing in young children under 5 is also not always accurate due to how their systems develop (my oldest has enviro allergies out the wazoo). So I'd do what another person recommended - just eliminate. When DS started having eczema and we suspected food, I just started keeping a food diary. That's how we figured out the wheat.

Keep a food diary with reactions. Avoid those foods regardless of negative test results (in addition to known foods). Research food challenges if you haven't already. Good luck!

 

[eliz603]

Another thought - has your child been tested for Celiac?