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Hi! I am new -- wondering about myself & my 5 year old (Read 3874 times)
KansasMom
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Hi! I am new -- wondering about myself & my 5 year old
06/17/13 at 05:44:35
 
Hi, I'm new to the forum. I have been having some symptoms -- angioedema, edema, (lymphedema due to surgery but not related), paradoxal reactions to medications, flushing (I think), etc. So I recently had labs done and my Total IgE was 111 and my doc sent me to an allergist. My only allergy is dust -- which is high -- but doesn't seem to warrant a high total IgE. He did more lab work, and my Tryptase was 10.8 -- well the reference number was less than 11.5 so it is considered normal. But from what I've read on your forum is may not actually really be normal? My eosinophils were also high -- although not super high. I feel like everything is just a bit off -- and nothing looks scary enough to get the doctor's attention.

I did have a very low Vitamin D count, so I am on Vitamin D supplements. Not sure if that would be related?

I have a 5 year old daughter who suffers from abdominal pain and motility issues. She was scoped and had instestinal inflammation from non-specific cause. She also had anaphylaxis to a cashew nut and had severe allergies. I asked about MAST cells being tested in her gut but they said they didn't do that. So, I wonder about her as well as myself.

Do you think a 10.8 tryptase needs to be followed up on? I haven't had angioedema in probably close to 6 months -- going gluten free seems to have helped. I do get hives when exercising in the cold -- but not recently. But, my edema -- which is much much worse in my right calf/ankle/foot really bothers me.

Thanks for your help!!
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Starflower
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Re: Hi! I am new -- wondering about myself & my 5 year old
Reply #1 - 06/17/13 at 13:41:28
 
Hi KansasMom,

Welcome to the group!

A tryptase that high does point to a mast cell disorder (although you and your doctors are right that it's nothing scary).  Have you tried any mast cell treatments like antihistamines?  If so, did it help?  Also... have you ever had your complement levels tested?  I'm thinking specifically of C1q, which is a marker for hereditary angioedema (HAE).  If that turns out to be part (or all) of your problem, HAEA offers amazing support for patients.  

I don't have HAE, but I do get edema in my ankles.  It's a lot better now that I'm fairly stable and getting regular exercise.

A low vitamin D level can make everything feel worse Sad  I take about 30,000iu per week, which has made a huge difference... my level last time was in the 50s.

Heather
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KansasMom
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Re: Hi! I am new -- wondering about myself & my 5 year old
Reply #2 - 06/18/13 at 00:33:16
 
Thanks so much for getting back to me! So I do think he tested me for Hereditary Angioedema -- but I do not think it was that complement -- it was a different one? I need to find the labs (and I will post again) but that was normal. It makes me wonder though if that has a different normal like the tryptase does?

I haven't been back to my allergist since the labs so I haven't discussed the tryptase with him but I am guessing he is going to say "it is normal. or, it isn't high enough to mean anything." So then what do I say?

He did just have me start daily antihistamines -- and I am not sure they are helping? Not with the edema/swelling anyway. I am taking allegra -- is that the right one to take?

He is retesting my Vitamin D in 3 months to make sure it went back up.
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Re: Hi! I am new -- wondering about myself & my 5 year old
Reply #3 - 06/18/13 at 14:06:32
 
I originally started taking antihistamines to prevent another trip to the ER.  It took me a while... honestly a couple of years... to recognize all the other symptoms I had that were not "normal" and how mast cell medications could help.  

That being said, I get abdominal angioedema during my cycle (OMG is that painful) and none of my usual medications help.  All I can do is take a strong painkiller and wait it out.  Ditto for edema around my ankles... although at least it's not painful!  Massage helps a bit temporarily.  Compression stockings work for some people, but they give me petechiae.  I'm not sure why, but edema is a stubborn symptom to deal with Angry

Although I personally can't take it (and you have to be careful), aspirin can be good for reducing flushing.  I can't take allegra either (it gives me a headache), but for most people it works great... it's definitely one of the recommended H1s.  Have you tried an H2 like Zantac or Pepcid?

Heather
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We're all in this thing together
Walkin' the line between faith and fear
This life don't last forever
When you cry I taste the salt in your tears
(Old Crow Medicine Show)
 
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KansasMom
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Re: Hi! I am new -- wondering about myself & my 5 year old
Reply #4 - 07/11/13 at 14:02:13
 
So I think I might be getting somewhere with this. My allergist of course said anything under the reference range is a negative and there's no "grey area." But he's old school and I don't think he's right. So I saw my GP today and told her about all of it and she seems to agree with me. There is something allergic/mast cell related going on with me that just a dust allergy doesn't seem to explain. So, she prescribed Zantac & Singulair, to add to the Allegra my doctor already prescribed. Does that sound like the right combination? I am going to try it and see how it goes!
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DeborahW, Founder
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Re: Hi! I am new -- wondering about myself & my 5 year old
Reply #5 - 07/12/13 at 10:05:09
 
That is a great combination. Many of us take Zantac twice a day (morning and evening) and allegra and/or zyrtec twice a day (morning and evening). Throw in a singulair once a day, and you have a great combo! That is the combo I took when I was quite ill and it helped so much.
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