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My 13 year old daughter has a tryptase level of 18, should we be concerned?
We went in for testing because we thought she might have a seafood allergy. She had developed a rash while on spring break. The tryptase level came back at 18 and she is not allergic to seafood.
The rash went away. She has had terrible headaches for a couple years. She dances 4 days a week and she gets seriously red faced after a few minutes. Never thought anything of it. She has sensitive skin. If she gets a mosquito bite, she gets a huge welt. The doc says we need to wait 4 weeks for another blood test. Just hard to wait...
The rash went away. She has had terrible headaches for a couple years. She dances 4 days a week and she gets seriously red faced after a few minutes. Never thought anything of it. She has sensitive skin. If she gets a mosquito bite, she gets a huge welt. The doc says we need to wait 4 weeks for another blood test. Just hard to wait...
Just got the results of the 2nd test and the tryptase level was still 18.
2 Comments
Well, it's not a false positive because of her flushing.
If her level stays at 18, then they'll maybe eventually want to do some other testing to rule out mastocytosis - though she doesnt have the physical signs of that and her level is not super high, they still might want to rule it out.
Was she by chance flushing when she got the blood draw for the tests? The flushing can conceivably be stress induced. If she flushes during the test, that is extremely important.
There's also a 24-hour urine sample test for histamine that they might do.
If her level stays at 18, then they'll maybe eventually want to do some other testing to rule out mastocytosis - though she doesnt have the physical signs of that and her level is not super high, they still might want to rule it out.
Was she by chance flushing when she got the blood draw for the tests? The flushing can conceivably be stress induced. If she flushes during the test, that is extremely important.
There's also a 24-hour urine sample test for histamine that they might do.
Let me rephrase: we know it's not a false positive on the testing because she does also have the flushing, which is mast cell related.
COMMUNITY LEADER
Then the level of 18 is her baseline, which is high but not super high.
So the doc put off the followup test for 4 weeks to see if the elevated trypsin is transitory and will go down by itself. Was she having bad hayfever or other allergies at the time of the test? You want her to have a low baseline even if she has big spikes.
Btw, I've read that children can have a problem with MCs but that it can get better all by itself over years, so keep your fingers crossed for that, too.
She can observe if any foods trigger any symptoms, and of course then avoid those foods.
The red line (dermographia) happens because MCs in the skin get set off too easily. It's not normal. You can try drawing the line on yourself and compare what happens to hers. This is likely a genetic condition. Any blood relatives of hers can test themselves and see if they have something similar.
So the doc put off the followup test for 4 weeks to see if the elevated trypsin is transitory and will go down by itself. Was she having bad hayfever or other allergies at the time of the test? You want her to have a low baseline even if she has big spikes.
Btw, I've read that children can have a problem with MCs but that it can get better all by itself over years, so keep your fingers crossed for that, too.
She can observe if any foods trigger any symptoms, and of course then avoid those foods.
The red line (dermographia) happens because MCs in the skin get set off too easily. It's not normal. You can try drawing the line on yourself and compare what happens to hers. This is likely a genetic condition. Any blood relatives of hers can test themselves and see if they have something similar.
COMMUNITY LEADER
Make sure that you don't get the followup test soon after a flushing episode. They want a baseline number for the tryptase, when things are settled down.
Be wary of anaphylaxis. I'm not saying that's likely, just that it's possible. One day she *might* have to carry an EpiPen.
I assume rhat she doesn't have mottled reddish brown skin all the time, else you would have mentioned that.
Be wary of anaphylaxis. I'm not saying that's likely, just that it's possible. One day she *might* have to carry an EpiPen.
I assume rhat she doesn't have mottled reddish brown skin all the time, else you would have mentioned that.
1 Comments
She does not have the mottled reddish brown skin.
The rash was in the last week of March and her blood work was done on May,1. I'll check and see if she can draw a red line on her sternum.
The rash was in the last week of March and her blood work was done on May,1. I'll check and see if she can draw a red line on her sternum.
COMMUNITY LEADER
Hi, that sure seems like a problem with "mast cells" aka MCs. A person's MCs produce histamine, which is the chemical that everybody knows is associated with allergies. MC's also produce many other chemicals, such as tryptase, that along with histamine and other MC chemicals are associated with flushing of the skin -- because they dilate blood vessels.
MCs are filled with those chemicals and stay in the skin, waiting to be triggered. In a person with a mast cell disorder, the MCs get set off too easily. E.g., she can probably draw a reddish line on her sternum just by using a fingernail.
It's very possible that her MCs are also causing the severe headaches. So the good news is that by getting diagnosed, a lot of present and future problems can be lessened. But probably not cured per se.
MCs also line the lungs and digestive tract and can cause problems there.
The terms are Mast Cell Activation Disorder (MCAD) and Mast Cell Activation Syndrome (MCAS).
There are some drugs that are "mast cell stabilizers". Good news is that some extracts from plants can do as good OR BETTER than drugs, as shown in studies. You can get them in capsule form. Let me know if you want their names.
Does she happen to be double jointed? There is an association.
There are some serious conditions that can come from MCs, but those don't seem involved here.
MCs are filled with those chemicals and stay in the skin, waiting to be triggered. In a person with a mast cell disorder, the MCs get set off too easily. E.g., she can probably draw a reddish line on her sternum just by using a fingernail.
It's very possible that her MCs are also causing the severe headaches. So the good news is that by getting diagnosed, a lot of present and future problems can be lessened. But probably not cured per se.
MCs also line the lungs and digestive tract and can cause problems there.
The terms are Mast Cell Activation Disorder (MCAD) and Mast Cell Activation Syndrome (MCAS).
There are some drugs that are "mast cell stabilizers". Good news is that some extracts from plants can do as good OR BETTER than drugs, as shown in studies. You can get them in capsule form. Let me know if you want their names.
Does she happen to be double jointed? There is an association.
There are some serious conditions that can come from MCs, but those don't seem involved here.
1 Comments
We did the "scratch" test and it made a red mark that went away in about 3 minutes. Another good sign I'm guessing...
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