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Topic Summary

Posted by: jschwab
« on: November 27, 2013, 03:42:48 PM »

The allergist was very good, with good bedside manner and she seemed knowledgeable and personable but not overbearing. She took the time to listen and was able to answer my questions competently. She said at that practice their protocol is to do the blood test first. If nothing shows up, they will skin test. Next step is RAST in January and then follow up.  I was very happy. She was also able to convey the limitations allergists work under in terms of predicting future reactions and offering therapy in a real way, which I appreciated.
Posted by: jschwab
« on: November 22, 2013, 01:08:03 PM »

Yeah, I am in a slightly different situation. I have had bad environmental allergies pop up (orange cat, I'm looking at you) but, for the most part, these have been controllable for me with daily antihistamine and nasal steroids. I consider myself to have zero quality of life issues around that at this point BUT your point is well-taken and speaks to my experiences, especially around the dust mites > shellfish link.
Posted by: twinturbo
« on: November 22, 2013, 12:46:41 PM »

Yeah, some of my allergens I have to lump and deal with. The others my general plan is to knock down the well-studied ones with established treatment namely the environmentals. Same for my younger one who is wheat, barley, rye, oats, cow milk, beef, dermatographic, systemic temperature change hives, severely sensitized to dust mites, suspected nuts, shellfish, soy, and overall produces a lot of histamine. The likelihood of him being able to tolerate high histamine foods is very low and skin testing is almost pointless because he reacts to control.

He was the single most significant reason my husband went to the allergy & atopy conference in Asia. The profile of allergic population there is different and treatment has gone a little differently, I think. There's a lot more attention paid to dermatology issues, which coincides with the limited amount of focused study on Asian American patient population here in the states, that our kids are very atopic and prone to eczema. If it's true that transcutaneous sensitization is increased by skin barrier breakdown then it changes our approach slightly to increase attention to treating the underlying environmental allergens earlier through SLIT (as proposed at the conference) and/or SCIT.

For myself I've given it one year. If my pollen-food hasn't resolved I'm pursuing pollen and other environmental immunotherapy. I've decided for my longer term self-care to beat down what I can. I also take Zyrtec daily to deal with the minor issues so I don't have to break my stride any time I have a slightly itchy tongue from a spice.
Posted by: jschwab
« on: November 22, 2013, 12:21:39 PM »

We RAST (or if you want to call it IgE test) with the one kid on daily Zyrtec. For SPT he goes off Zyrtec but for oral challenges he actually stays on Zyrtec because it doesn't alter threshold all that much. Doc also reasons since he's on daily Zyrtec it is a more valid test than if he went off anti-histamine for a challenge.

The one thing I would look into given your allergen set is high heat treated milk. That has some validity to it that is somewhat of a treatment that also affects quality of life, and possibly positively influences contamination thresholds for untreated milk. Good, solid data on that one as long as you have an up to date doctor and adherence as an adult. I think there is some validity to dampening down your allergy cup through environmental allergy immunotherapy which is well established.

In essence you can't do much about the shellfish and almond but there are some adjunctive allergy issues that can be attacked with a great statistical likelihood of success that can translate into a better overall outcome.

Thanks, that's helpful. I think I may have outgrown the milk a little recently but I am not sure. I did have a couple bad reactions that could only have been milk cross-contamination early on. About a year ago, I ate at Five Guys and they messed up the no bun part of my order and I could not take going back to switch it out so I just removed the bun and ate my meal. I had been told the buns don't contain milk but that is actually not true. That was a pretty good opportunity for a reaction. While I flushed some and my mouth felt fuzzy, I was OK. And, before that, I was up and down with milk, giving it up after increasingly intense gastro symptoms and then tolerating it again and then going off it and then ana. Before the ana, I thought it was some kind of lactose intolerance. But the fact that I went up and down made me think it was a mutable reaction that can get better or worse with sensitization. I never tested positive for it and it was the one the doctor wanted to do an OFC for. I always said if I did a challenge, I would do it myself sitting in front of the ER instead. Have not done that mostly because no one in my house tolerates dairy much, anyway. Two of my kids decided to give it up because it made them feel not so hot and hubby doesn't eat it, so there is no real incentive. I have always tolerated shared equipment.

My last major reaction was never identified but I assumed it was dairy. It was 18 months ago and pretty intense - it was the first time I reached for the Epi because my throat closed all the way and my airway was completely cut off and I freaked. We could not find the Epi, though, and the reaction passed. We had had a friend house sitting who had butter in the fridge and I got sick after eating peanut butter out of its jar and I assumed she'd double dipped a knife or something. I never asked her what she'd had in the house because I didn't want her to feel bad. I just hired a vegan housesitter for the same vacation so that works out well on the food front LOL
Posted by: twinturbo
« on: November 22, 2013, 11:31:00 AM »

We RAST (or if you want to call it IgE test) with the one kid on daily Zyrtec. For SPT he goes off Zyrtec but for oral challenges he actually stays on Zyrtec because it doesn't alter threshold all that much. Doc also reasons since he's on daily Zyrtec it is a more valid test than if he went off anti-histamine for a challenge.

The one thing I would look into given your allergen set is high heat treated milk. That has some validity to it that is somewhat of a treatment that also affects quality of life, and possibly positively influences contamination thresholds for untreated milk. Good, solid data on that one as long as you have an up to date doctor and adherence as an adult. I think there is some validity to dampening down your allergy cup through environmental allergy immunotherapy which is well established.

In essence you can't do much about the shellfish and almond but there are some adjunctive allergy issues that can be attacked with a great statistical likelihood of success that can translate into a better overall outcome.
Posted by: jschwab
« on: November 22, 2013, 11:11:34 AM »

Yes-- antihistamines have no impact on circulating levels of IgE.

Really? I have my plan then.
Posted by: CMdeux
« on: November 22, 2013, 11:03:40 AM »

Yes-- antihistamines have no impact on circulating levels of IgE.
Posted by: jschwab
« on: November 22, 2013, 10:37:40 AM »

Some people just historically don't skin test very reliably, too-- if you're one of them, then it makes much more sense not to bother and just go with RAST and history.

I hated the skin testing and how itchy it was so I would be glad to leave it out. Do you know if it's correct that RAST testing can happen without going through the no-antihistamines protocol?
Posted by: CMdeux
« on: November 22, 2013, 10:35:08 AM »

Some people just historically don't skin test very reliably, too-- if you're one of them, then it makes much more sense not to bother and just go with RAST and history.



Posted by: jschwab
« on: November 22, 2013, 10:16:48 AM »

I agree with CM.  I hope you find a great allergist.  And I could be wrong but I think you can get RAST tested without going off meds.  Our doc is not big on RAST and does skin usually but I think that's the case.  Testing is not the be all and end all but it can be helpful.  But it isn't necessary.  If you walked into most allergists and described your past reactions they would give you a script for epis and emergency plan. 

I can't remember your whole story but if you are having some mystery reactions testing via RAST could help you figure out the cause and so could in office challenges. 

I would want the very best allergist I could get if I were you.  Best wishes!

No mystery reactions, thank goodness. It's almonds. Every once in a while I think I get dinged with cross-contamination but that is all. We had almond flour EVERYWHERE in the kitchen, all over everything, so I'd be surprised not to have any issues with that.

I gave myself an oral food challenge by eating a single almond the day after this reaction [DO NOT EVER DO THIS] while I was still pumped full of steroids and planning on having almonds for dessert. At that point I was not sure what happened and thought maybe some sausage had some cross-contamination issues. I had an idea it might have also been the almond milk (worst case scenario, obviously, because a new allergen for me) and my hunch was correct and I reacted strongly. A week after that I had another bad reaction from cross-contamination that resulted in massive hives. After that hives reaction, I started blowing up to anything containing almond oil so it was pretty clear. And I have eaten every other component of that meal since then with no problem. That's enough confirmation for me with no testing.

You might be right about RAST. When I had allergy testing before, I was negative on skin and the allergist told me I was 100% not allergic to shellfish and I could eat it all I wanted. His assistant had a devil of a scare when the RAST came back positive and she could not contact me. So, maybe the skin did not work because I was not compliant enough with the protocol, because I had had skin reactions to shellfish before.
Posted by: lakeswimr
« on: November 22, 2013, 07:28:58 AM »

I agree with CM.  I hope you find a great allergist.  And I could be wrong but I think you can get RAST tested without going off meds.  Our doc is not big on RAST and does skin usually but I think that's the case.  Testing is not the be all and end all but it can be helpful.  But it isn't necessary.  If you walked into most allergists and described your past reactions they would give you a script for epis and emergency plan. 

I can't remember your whole story but if you are having some mystery reactions testing via RAST could help you figure out the cause and so could in office challenges. 

I would want the very best allergist I could get if I were you.  Best wishes!
Posted by: CMdeux
« on: November 21, 2013, 12:11:16 PM »

Yes-- BUT-- as someone who has developed multiple adult-onset allergies, you probably are a person who is going to need an established relationship with an allergist.  If not now, then in the future.

If you NEED to get an emergency epi script phoned into a pharmacy out of town, for example, a good allergist can do that for you. 


I find it mentally hard to think of myself as being a person with "complex" medical needs.  But in some ways I guess that I am.  I see my PCP about every two years, realistically.  But sometimes I do need to see someone with specialized knowledge. 

I know how you feel though-- I have been putting off a referral to a geneticist because I just keep thinking "so what-- I pretty much already KNOW what they are going to tell us, and there isn't a test... so what's the point??"

Posted by: jschwab
« on: November 21, 2013, 10:39:48 AM »

Nothing much to add just in to wish good luck, hoping this is your 'prince' after the frog. For me I always feel like I don't have time to deal with my own personal allergies when there's so much I have to do. The paradox of a mother's self-care.

Yes, this is why I am not really sure I want to go and pick up the phone to cancel every day. I don't really have time for diagnosing a new allergen that I already determined was the cause. I am not sure what any allergist could do for it, anyway. They don't do much for adult onset allergies anyway except hand you an Epi-Pen.  There is nothing really to "manage". I hate spending health care dollars on things that are just about diagnosis and not therapy, you know?
Posted by: jschwab
« on: November 21, 2013, 10:34:29 AM »

This might seem obvious, but I don't see it mentioned here.

If you are taking any antihistamine, if possible stop.  If the doctor wants to do any testing you have to have it out of your system for a certain amount of time.  (Sorry, I don't remember how long.  An week?)

That includes any other meds that have antihistamine in them...certain colds meds, and gravol (anti-nauseant, not sure of US name or if it's a different med there.)

It's not happening. I already posted about this in another thread because I have a lot of anxiety around the testing. I did the maybe 4 years ago due to ana reactions to shellfish and dairy and I blithely thought I could do the ten days with nothing in my system. I lasted five hours and discovered my environmental allergies were way more intense than I ever gave them credit for. I could not breathe, had flulike chills and soreness, etc. I had not missed a pill in something like 20 years and have complete remediation of symptoms with nasal steroids and 24 hour antihistamines, so I just had no idea how bad off I was without meds (although bad enough I never missed). I ended up not making it, I think. I took Benadryl for a week and I think negotiated something on those final three days, but I don't remember exactly what. I don't think they would conduct the testing at the first consultation anyway.
Posted by: twinturbo
« on: November 21, 2013, 08:40:41 AM »

Nothing much to add just in to wish good luck, hoping this is your 'prince' after the frog. For me I always feel like I don't have time to deal with my own personal allergies when there's so much I have to do. The paradox of a mother's self-care.