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Ideas Needed – IgE Results Not Good

Hi All,

First time poster here. I just received my IgE results and was shocked at the number of things I'm allergic to. I'm 48, live in Hong Kong with asthma. Prior to HK, I was in California and asthma was not nearly as bad, mostly just an issue in the winter months. On arriving in HK, I did the skin prick test which came back with a positive allergy for dust mites and I've been at war with them since. Now, I went further with the IgE test (to check if I had any unknown food allergies) and it came back positive for many items (these are all class II or above) including: cat, dog, dust mites, mould, grass, tree, weed, shrimp, crab, lobster, rice, potato, soybean, peanut, tomato, orange, eggs, nut mix, fruits mix. I'm planning on seeing an allergy & immunology specialist but also curious from others on the following:

I read in another thread about common false positive results for IgE tests, has anyone experienced this? 

Only class III or above (cat, shrimp, crab, lobster, dust mites) trigger my asthma, if I don't have a physical reaction to a food I'm allergic to, is it still worth avoiding?

The number of foods I'm allergic to is very overwhelming, have others experienced this in their 40s and had any success with adjusting eating habits?

Has anyone used the home dust mite testing kits (I found one on amazon)? I've been doing all of the regular advice (hepa filters, washing sheets weekly, pillow covers, mattress cover, trying to keep humidity low) and I'd like to try and quantify how bad my home mite issue really is.

Apologies for the length post, I guess I'm just a bit overwhelmed.

Thanks!

 

 

 

 

 

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  • K8sMom2002

    Hi, Warenpeace and welcome!

    You're right about false positives. Food allergy tests can detect sensitivities but not necessarily good for screening. AAFA's food allergy division, Kids With Food Allergies, has more about .

    As for false positives, yes, my family has experience with those. My DD tested spectacularly allergic to soy, though she'd never had a problem with it. We did a food challenge to soy, and she passed it with flying colors. Ditto with peanuts — she passed an in office food challenge to peanuts, even though she tests positive. The reason she tests positive is that she is allergic to one protein that doesn't usually cause severe reactions in most people. 

    It sounds like you are keeping a good record of what causes your asthma to flare — a good symptom diary. It's worth taking that information to your doctor and discussing the pros and the cons of avoiding a particular food.

    Also, remember that anaphylaxis doesn't always mean what the movies say it means. KFA also has a good resource on .

    I couldn't tell you about the dust mite test … but you might find more info about things that are better suited for folks with asthma and allergies at the asthma & allergy friendly™ Certification Program … quoting here:

    The asthma & allergy friendly™ Certification Program, administered by the Asthma and Allergy Foundation of America (AAFA) in partnership with the international research organization, Allergy Standards Limited (ASL), is an independent program created to scientifically test and identify consumer products that are more suitable for people with asthma and allergies. You can find certified products and services such as carpet cleaning, flooring, vacuums and more at 

  • Shea

    Hi Warrenpeace. Both my son and I have food allergies and environmental allergies.

    My food allergies developed when I was 13, after I had a major intestinal surgery. Sometimes I wonder if I had them before but just more mildly, because one was peanuts and grew up on pb and j, but after my surgery, I would get nauseus and stomach aches, and over time and different accidental ingestions, my peanut allergy now is pretty severe–Anaphlaxis, cant breathe, need epipen and ambulance immediately. 

    So severity can change, and, in my case, get worse with continual ingestion. 

    I suggest getting an epipen and carrying it and benadryl with you. 

    Then, I think food challenges are good for suspected allergies that you did test positive for. 

    Dog dander was another one–I lived with dogs most of my life but only thought I was mildly allergic to them, but severely to cats. During pregnancy, my reactions got so bad I developed a severe chronic allergic disease and I found out that dog dander was a huge trigger for the entire disease and had caused me significant health issues including asthma, vasculitis, and a heart attack from allergic blood cells called eosinophils surrounding my heart and choking it. I had to move into a dander-free home just to get the disease somewhat under control, and now if a dog touches me, I immediately break out in hives, my asthma is very sensitive to dander , I still have the chronic allergic disease, but manage it by avoidance along wity medications for flares and maintenence. 

    So, the moral of the story is, take it seriously, pay attention to these things and do not brush it under the table if it is mild to start, because that could change. Challenges are best made at an allergists office. 

    Eating out CAN be a pain, but there are more restaurants with food allergy menus now, and once you find some places and go-to safe foods, it will be easier. 

    Keep up the air purifier and hot water washing, those have helped so much for my son and I's dust mite allergies. 

    And, come here for support, everyone on here has really helped me make good progress coping with asthma and allergies. 

     

     

     

  • Shea

    (I am allergic to apples, grapes, peaches, pears, plums, all nuts, cat and dog dander, mold, dust mites, and have severe adthma reactions to sulfites, such as are in dried fruits. My 5 year old is allergic to soy, nuts, cantaulope, honeydew, cat and dog dander, dust mites, molds, ragweed.. and he has oral allergybsyndrome where he cannot eat cucumbers and bananas certain times of year when ragweed pollens are high because they make his mouth itchy, but other times of year, or cooked he can ingest them fine). 

  • warenpeace

    This is all great advice, many thanks. I'm going to keep testing and evaluating until I make significant progress. Such a mystery to discover this later in life, and will try some of the challenges in doctor's office to try and course-correct on any false positives.

  • Brian Cushing

    I believe Xolair is the drug of choice for high lgE levels. It's a twice-per-month injection. Check it out: 

     

  • warenpeace

    @Jen - yes, have an appointment with a specialist scheduled. What I really need to know is whether I need to avoid these foods to which I have a mild allergy, especially since I've been eating them all my life and I DON'T get a noticeable reaction after eating them. It's only cats, crab, lobster, shrimp that actually trigger my asthma. 

  • K8sMom2002

    It's good that you're not seeing asthma flares from all of these foods. As for food allergies, is the specialist an allergist? Could you arrange a consult with an allergist to give you an for the foods that don't cause an asthma flare?

  • warenpeace

    @K8sMom2002 Yes, the specialist is Immunology & Allergy, apparently there are only 2 of these doctors in all of HK which is surprising. I'll ask about the food challenge idea this Thursday, that sounds like a good idea. I am also looking at an allergy test to sulphites, since I drink wine at night.

    Almost every time I get a flare, it's 3-4AM and I wake up and take medicine. Usually, earlier that day I can tell its coming, but its never bad enough to be discomforting. 

    I bought a use at home peak flow monitor, the day after using medicine I can get a 450 L/min. Then it gradually goes down to 300 L/min. Once I have a clear sense of the triggers, I'll move on to more breathing exercises to improve my peak flow scores which I know need to be 600+.

  • K8sMom2002

    I'm hoping that the allergist/immunologist will be able to help you figure things out! Lots of members have talked about asthma worsening at night and in the wee hours of the morning — I believe it may have something to do with the body's natural steroids dropping at that time? 

    Could you also ask the doctor to check your peak flow monitor with theirs, and then help you write an asthma action plan that tells you what to do when your numbers drop? Or don't come back up like they should?

  • Brian Cushing

    Are you using albuterol when your peak flows are that low? Does it help? If your peak flows are going as low as 300, then I believe you need a better asthma management plan (I'm assuming you're male). Are you using a LABA right now (Dulera or Advair)?

  • warenpeace

    @Brian Cushing - thanks for the note. I think you're probably right in terms of a better plan. For the last two years I've used Seretide 100, a new doctor just gave me Flutiform which I've only used 3 times now. I don't know what LABA is. I only use the drugs when I actually need it (I don't take it regularly), as I'm trying to focus on the trigger and not just the treatment. If I can't get the peak flow up then I'll be forced to take the drugs more regularly.   

  • Brian Cushing

    LABA: Long-Acting Beta Antagonist. Serevent and Flutiform are both LABA's. They don't work so well when they are taken intermittently; most asthmatics take them every day to keep symptoms in check. Are either of these helping you maintain control? If you are still experiencing low peak flow results while on a LABA, you might be a candidate for Xolair injections, especially if IgE levels are your problem. Have you been given a course of oral prednisone to help you get control when things get tight? 

  • Brian Cushing

    Oh, and one other comment I'd like to offer: since you seem to be allergic to so many things, do you want to live your life in a bubble? You can't avoid many of the triggers in your list and still live a full life; you might instead think about working to develop a medication strategy that minimizes your body's over-response to those triggers. Don't punish yourself; instead, work with an allergist and try different meds and treatments in various combinations until you get control of your body's immune response to the stuff on your list of triggers. Just some advice from one asthmatic with severe environmental triggers to another…. 

  • warenpeace

    Thanks for your further thoughts @Brian Cushing

    The Flutiform does work for me, and it works within a minute. Have not tried oral prednisone. I'll find out more tomorrow after seeing a specialist, my biggest question is whether a mild food allergy (foods that trigger asthma for me are only crab, shrimp, lobster) which doesn't trigger asthma is ok to eat. Part of me thinks that if I can get my dust mite trigger under control I might not need to take a regular steroid. 

    Its really nice to hear from others, very much appreciated.

  • K8sMom2002

    Good luck with the specialist today, @warenpeace! Could you go over your medications with your new doctor and ask for advice on how and when to take them?

  • warenpeace

    Update on visit to specialist.

    He said all of the food-based allergic reactions which showed low numbers/levels on IgE test were likely incorrect. He said the IgE test is very hard to do and that the labs here in Hong Kong are not accurate enough. So, very good news. As a precaution, we did a skin prick test on a couple of the foods that had showed up on IgE – no reaction at all so the false positive on IgE was confirmed. 

    Now I just need to keep fighting the dust mites to avoid that strong trigger as much as possible. Thanks all for your thoughts and suggestions!

     

     

  • warenpeace

    Actually, yes, I've always had a reaction to dust mites, both in skin prick and IgE. It was just the foods (wheat, egg, orange, tomato, nuts) which were negative.

     

  • Brian Cushing

    If that is the case, then you might check with your allergist regarding Xolair shots. They are quite effective against IgE antibody reactions. They're expensive, but possibly your insurance will pay for them. They are helping me better manage my asthma and I have dust mite allergy as well. 

  • warenpeace

    Thanks @Brian Cushing, are those the shots that desensitize you over a period of time? My doctor did recommend those but said it takes 1-3 years which I wasn't really ready for…

  • Brian Cushing

    Hi, Warenpeace; I've been on Xolair for 2.5 months, and I'm feeling better. I was completely prednisone-dependent previously, and now I'm managing my asthma much better without the steroids. The Xolair deactivates the IgE antibody specifically without the side effects that drugs like prednisone are known for. I'm just saying that Xolair is something you might try, if you can get your insurance to pay for it (it's very expensive). 

  • K8sMom2002
    warenpeace posted:

    Thanks @Brian Cushing, are those the shots that desensitize you over a period of time? My doctor did recommend those but said it takes 1-3 years which I wasn't really ready for…

    @warenpeace, could your doctor have been referring to allergy shots or ?

    For pollen allergies, there's also Sublingual Immunotherapy. That involves placing a tablet containing the allergen under the tongue for 1 to 2 minutes and then swallowing it. 

    @Brian Cushing, so glad the Xolair is working for you! What was the trick to getting your insurance to help pay for it?

  • K8sMom2002

    And another tip on the dust mites — an air cleaner or air filter that's designed to help folks with asthma and allergies might help reduce the amount of dust in your home. 

    AAFA has a series of blogs with lots of clean air tips —  — and there's a giveaway!

    The Asthma and Allergy Foundation of America and Dyson are giving away three certified asthma & allergy friendly® Dyson Pure Cool™ Link air cleaners. So don't forget to comment and vote in order to get your shot at one of those air cleaners!

  • Jen

    @warenpeace Have you figured out some ways to help you minimize your exposure to allergens?  

  • Jen

    @warenpeace Have you been able to talk to your doctor about other options that might help?