Dr. Hive

[Carrie12345]

Please don’t quote. Not because it’s actually TMI, just because it’s my preference not to have my sister stumble upon me while googling, lol. I know it could happen, I just don’t like to provide the keywords. So I will edit/delete later.

Basics of deleted: Older toddler, persistent allg. reactions, 0 results on blood tests.

 

Edited September 18, 2021 by Carrie12345

[Katy]

I thought blood allergy tests were not reliable snd you must do a skin test to know. I’ve heard more than one doctor complain about the “allergy and food sensitivity” tests sold on social  media because they have no scientific basis, according to them. 

[Katy]

I’d do an elimination diet.  Start with rice because it’s low allergy in the US.  Then add things in order of nutrition, like sweet potatoes and regular potatoes.  Then add in foods, one thing at a time.  3 days apart. Watch for reactions. 

[Carrie12345]

Just now, Katy said:

I thought blood allergy tests were not reliable snd you must do a skin test to know. I’ve heard more than one doctor complain about the “allergy and food sensitivity” tests sold on social  media because they have no scientific basis, according to them. 

Just to be clear, these were not at-home kits.

I don’t personally know the science of blood vs. scratch, only that dd’s blood tests came back positive for the allergies we suspected. I do realize that’s just a sample size of 1. 

[Carrie12345]

3 minutes ago, Katy said:

I’d do an elimination diet.  Start with rice because it’s low allergy in the US.  Then add things in order of nutrition, like sweet potatoes and regular potatoes.  Then add in foods, one thing at a time.  3 days apart. Watch for reactions. 

Well, he’s nearly 3. I’m not sure how one gets a 3yo to eat nothing but rice for 3 days. She has done a food diary before, which is how she pegged the one thing she thought she was sure of, and now she avoids that thing as well as not trying any new things unless she’s taking note of it.

[scholastica]

When we went through food allergies with my oldest, and we wanted to check to see if he was outgrowing any of them, the order was blood test, skin test, food challenge. I would seek skin tests next. 

[Spryte]

Skin prick tests are the gold standard. Blood work is less reliable. I would SPT next.

Edited September 18, 2021 by Spryte

[rutheart]

When we did allergy testing, we had to push for non-standard foods to be tested. My youngest had daily hives for many, many months as a baby. The allergist could not figure out the problem. Skin tests would not work because she was already covered head to toe in hives. At the beginning, I remember the doc saying she was too young to take daily allergy meds. We spent more time at the allergist than the pediatrician that year. Eventually she was able to take allergy medicine, but the cause of the allergy was still not discovered until my youngest started eating table food, and had a really bad reaction to oatmeal with cinnamon that we realized that was the issue. Then we had the allergist make a customized skin test for cinnamon, and we were finally able to confirm it. I had been breastfeeding and consuming cinnamon daily for my insulin resistance, and apparently enough of it was in the breastmilk to trigger the allergy.

We had another child with an allergy to rice. That was much easier to pinpoint because when we changed our diet to see if it was wheat/gluten, the reaction got much, much worse. The doctors did not believe it could be a rice allergy, but we just eliminated rice from her diet, and she never had another reaction.

My point is that not all allergies are due to common allergens, and allergists might not even have a test for the item that is causing the reaction. Unfortunately, it could take months of guesswork, with changing the diet over and over again. Ultimately, my husband and I figured out the food allergies before the allergist. The skin tests were still worth doing though, as they did find some minor environmental allergies. If I had another child now, I would absolutely do a skin test with them as soon as they were old enough for the result to be reliable.

[ktgrok]

The blood tests are for just a small subset of things, with only the most common allergens. And not dialed in to particular areas. My kids had them done and it said no allergies for my daughter, but I KNOW she has seasonal allergies. Then I realized that oak pollen was not on the list of things checked. We have a terrible oak pollen season here, and live under 3 big oak trees. But they didn't test for that. 

[cjzimmer1]

I didn't see the original post but based on comments I'll add my experience.  Youngest DS was labeled failure to thrive as an infant.  We tried all sorts of things but basically he refused everything except breastmilk but didn't eat enough of that either.  His doctor said they don't really do allergy testing on infants younger than a year but she was out of ideas and called an allergist she knew and asked if he would please test DS.  Both blood and skin test revealed very mild allergy to eggs and dairy.  The milk in particular didn't really register on the blood test as an allergy. So mild in fact that the allergist said when they see those levels in kids, they start doing food challenges to see if they can introduce the food back into the kids diet and yet we needed to remove them at that level.   Within a week or removing those items from my diet (because even though he was almost a year old he ate nothing other than breast milk because he refused everything), DS started gaining weight and everything has been great since.  1 year later they did the food challenge on those items and he had no problems and it didn't affect his growth either. 

My point is that even very low level allergies can cause problems with some kids.  So if tests show ANY sign of reaction even if it's so low they say it shouldn't be a problem, at least take it as a consideration as you work through finding the cause.  

[Spryte]

Oh, I’m going to just add that even on SPT they don’t necessarily test for everything possible. It’s really most effective when a parent has some ideas for guidance. It took us 8 years to identify (most of) DS’s allergies. And we had to bring some items for SPT from home. Particularly memorable was bringing bananas at three different levels of ripeness. Green, yellow, mostly brown. I don’t recall which was most reactive now, as we just avoid all banana, but it’s not uncommon to react more to one level of ripeness than another.

Also, on the banana topic … look into latex. And other environmental allergens, not just the typical seasonal stuff. Our issues here were more than food and outdoor plants.

Things drastically improved for DS when we not only identified the food and seasonal allergies, but also figured out there was more going on at home.

DS has issues with VOCs, so any time we bought new furniture, mattresses, painted, remodeled anything … all that outgassing impacted him. It can impact one for years. Hives. Asthma. Behavioral type stuff due to fight/flight response when unable to breathe. Anaphylaxis. It was a nightmare.

So we did All The Things. Slowly, one by one, as we could afford it. We tested and did food elimination diets (this started when he was a baby, so I get how hard it all is, we did as best we could and modified what we needed). By 7-8 we had all the food allergies and most seasonal identified, but were stumped on what else was going on. We had a huge routine - washed all bedding, pillows, curtains on hot weekly; no knick knacks; compulsive dusting; mobile groomer every two weeks bathed our dogs; no animals on sleeping levels; we just did every single thing we had ever seen recommended for kids like this.

Then my doc, an LLMD so kind of a special doc, who knew we had issues, took DS on as a test case. She started going to conferences and working more and more with similar patients. She recommended a book titled something like The Four As: Allergies; Asthma; ADHD; and Autism. We did some of those recommendations, but not all. IV treatments. Some of what we tried felt really Out There, but we were desperate. And then she tested him for VOCs, and it was like a lightbulb went on. That’s something our team of board certified allergists had never checked.

So, as we could, we slowly switched things over in our house. We bought air purifiers that filtered VOCs, and new mattresses. Removed carpet, paid attention to all new building/construction materials. All that helped, slowly. And then we moved, and happened to find a house that obviously had a resident with the same issues (sure enough, it was the daughter!) - flooring in bedrooms etc that would not outgas. We replaced the hardwood in the main level with a type that is supposed to filter VOCS when sunlight hits it. 

At 17, DS is in good shape now, though he does still have seven anaphylactic food allergies, plus a few foods he can’t eat due to lesser allergies. No more asthma or allergy meds daily, though. It’s a win.

Not sure any of that will help, but wanted to share. Our journey was hard, and I hope it will be easier for families now.