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Diagnosis no good

Hello everyone,

I am new to the forums and asthma. I have adult onset asthma and have suffered with allergies as long as I can remember. I was an immunology major(but changed my major later) so I remember doing blood counts of my own blood and having a lil bit of excess eosinophils in my blood. Just a few numbers above the limit in the blood. 

I was recently diagnosed with asthma around Jan this year and have used the reliever albuterol to relieve any attacks successfully until it stopped working for me in August this year. That’s when I went to the pulmonologist and he evaluated my Xrays and Spo2 and air flow counts and said I only have mild asthma and that the reliever should work. But gave me a steroid inhaler instead of the reliever and singular. The issue though is that I have stopped tolerating most foods since August and have a feeling that my throat is closing up when I eat food that I don’t tolerate. I have no clue what I can eat and what I can’t now and am scared of eating food. 

Most days even after using the steroid inhaler I seem to have bad breathing. I can breathe fine some days. I have been talking to a friend who is a pulmonologist and she says I should take Pred. 

But my pulmonologist says if some days I am ok then I should only use the steroid inhaler for SOS and not overdo anything.

I am confused as I am tired and weak and have lost a lot of weight since August. Nearly 20 pounds. Because of the food issues. All the blood work is always normal. But I am so tired and weak and want to be able to breathe easy again. Can you guide me on what to do?

 

and I want to add that the doc says there’s no wheeze every time I go to see him. So I am confused

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Comments 20

  • Breatheeasy
    Breatheeasy posted:

    Hello everyone,

    I am new to the forums and asthma. I have adult onset asthma and have suffered with allergies as long as I can remember. I was an immunology major(but changed my major later) so I remember doing blood counts of my own blood and having a lil bit of excess eosinophils in my blood. Just a few numbers above the limit in the blood. 

    I was recently diagnosed with asthma around Jan this year and have used the reliever albuterol to relieve any attacks successfully until it stopped working for me in August this year. That’s when I went to the pulmonologist and he evaluated my Xrays and Spo2 and air flow counts and said I only have mild asthma and that the reliever should work. But gave me a steroid inhaler instead of the reliever and singular. The issue though is that I have stopped tolerating most foods since August and have a feeling that my throat is closing up when I eat food that I don’t tolerate. I have no clue what I can eat and what I can’t now and am scared of eating food. 

    Most days even after using the steroid inhaler I seem to have bad breathing. I can breathe fine some days. I have been talking to a friend who is a pulmonologist and she says I should take Pred. 

    But my pulmonologist says if some days I am ok then I should only use the steroid inhaler for SOS and not overdo anything.

    I am confused as I am tired and weak and have lost a lot of weight since August. Nearly 20 pounds. Because of the food issues. All the blood work is always normal. But I am so tired and weak and want to be able to breathe easy again. Can you guide me on what to do?

     

    and I want to add that the doc says there’s no wheeze every time I go to see him. So I am confused

    I am just hoping it’s a flare up rather than anything else and that oral steroids will help. But scared to start them as I worried I’d be dependent on them thereafter. I have cut out all the common allergens and limited my food intake limited to what I need. I was a  binge eater before that. Also I am going through a divorce and I feel like a complete failure. It could be the stress of all of this and raising an autistic child on my own. But I am hoping to feel better.

  • K8sMom2002

    Welcome, Breatheasy! It sounds like you have a lot on your plate right now and a lot of issues to deal with.

    First of all, you are NOT a complete failure! I can tell you are smart and resourceful and you are trying to do everything you can to get better while taking care of a child with special needs.

    The swallowing issues are concerning. Have you seen a board-certified allergist with experience with food allergies and disorders like ? 

    I'm confused about your pulmo's advice about using the steroid inhaler as a rescue inhaler. Steroid inhalers are considered long-term controller medications and are NOT to be used as rescue inhalers. You can find out more about the different medication for asthma at .

    You're not alone here … we're definitely here for you and understand how asthma can turn your life upside down.

  • Breatheeasy
    K8sMom2002 posted:

    Welcome, Breatheasy! It sounds like you have a lot on your plate right now and a lot of issues to deal with.

    First of all, you are NOT a complete failure! I can tell you are smart and resourceful and you are trying to do everything you can to get better while taking care of a child with special needs.

    The swallowing issues are concerning. Have you seen a board-certified allergist with experience with food allergies and disorders like ? 

    I'm confused about your pulmo's advice about using the steroid inhaler as a rescue inhaler. Steroid inhalers are considered long-term controller medications and are NOT to be used as rescue inhalers. You can find out more about the different medication for asthma at .

    You're not alone here … we're definitely here for you and understand how asthma can turn your life upside down.

    Thanks Cynthia.

    I have seen an allergist who did prick test and says that I am allergic to soy and oats only. nothing else. Apart from environmental triggers. But it wasn’t a big issue until I started the asthma flare up. I don’t really know if it’s food or asthma. But I have this feeling of narrowing throat and heavy breathing at times. Could be both allergies and asthma. 

    I have decided to change the pulmo anyway. 

    Could you have eosinophilic esophagus and have normal eosinophil count in your blood?

  • K8sMom2002

    Hmmm … have you had reactions to soy or oats? Did your allergist suggest that you have an ?

    And I'm not sure on the eosinophil count in your blood … I know that EOE is diagnosed based off biopsies done when a GI scopes your esophagus. 

    Trusting your doctor is really important, so I hope your next pulmo will be one that you can speak openly with and get a good plan forward — and I hope the appointment is not too long off! Having a is important!

    You mentioned being worried about being "dependent" on prednisone if you take a short course. That's where having a great doctor when it comes to your asthma is so important. Getting your asthma stabilized and getting you on the least amount of medication to keep it controlled should always be your goal. You might start out with more medication at first, but then you can step down.

    But if you are feeling like you are having to use a rescue inhaler (or that you should use a rescue inhaler) more than twice a week, it's really important to have a good talk with your asthma specialist — that's a sign that your asthma isn't under control. 

    Here's a video about the different :

  • Wheezy Me

    BreatheEasy, welcome!

    Yes, eosinophilic esophagitis can exist with normal blood eosinophils (so can many other atopic conditions as well). Gastroenterologists deal with problems in swallowing. Maybe you should set an appointment with one, and ask specifically about EoE also.

    Good luck!

  • Breatheeasy
    K8sMom2002 posted:

    Hmmm … have you had reactions to soy or oats? Did your allergist suggest that you have an ?

    And I'm not sure on the eosinophil count in your blood … I know that EOE is diagnosed based off biopsies done when a GI scopes your esophagus. 

    Trusting your doctor is really important, so I hope your next pulmo will be one that you can speak openly with and get a good plan forward — and I hope the appointment is not too long off! Having a is important!

    You mentioned being worried about being "dependent" on prednisone if you take a short course. That's where having a great doctor when it comes to your asthma is so important. Getting your asthma stabilized and getting you on the least amount of medication to keep it controlled should always be your goal. You might start out with more medication at first, but then you can step down.

    But if you are feeling like you are having to use a rescue inhaler (or that you should use a rescue inhaler) more than twice a week, it's really important to have a good talk with your asthma specialist — that's a sign that your asthma isn't under control. 

    Here's a video about the different :

    No he did not want to do any oral testing as the prick test was the only thing he ordered and I got sick after that and I didn’t follow up. He gave me albuterol inhaler for sos. 

    I had bad GERD issues that got better after medication and then have chest pain on and off now a days. I guess I will need to go for endoscopy, I was scared to do it last time I had to go for endoscopy because I was out of breath most of the time. I am better now so I better go for it.

    Now I need to make appointments with an allergist and a gastro I guess. 

    The rescue inhaler does not work. It causes paradoxical bronco spasms. I stopped using it in August of this year because of that, I guess I need to test and see if it will work now. 

  • Breatheeasy
    Wheezy Me posted:

    BreatheEasy, welcome!

    Yes, eosinophilic esophagitis can exist with normal blood eosinophils (so can many other atopic conditions as well). Gastroenterologists deal with problems in swallowing. Maybe you should set an appointment with one, and ask specifically about EoE also.

    Good luck!

    Thanks. Fingers crossed I can go through the endoscopy without any issues. I will make the appointments.

     

    i have shortness of breath during the day most days. I do sleep through the night. I don’t have a rescue for when I get short of breath.  I was using pulmicort for maintenance but was asked to stop when the day time symptoms went away.(after a month) But after I stopped they are back again and are around almost everyday now. I.e shortness of breath(varying degrees of it). It gets better at night. 

  • Melissa G

    Welcome to AAFA Breatheeasy! 

    Cynthia, has already given you some excellent resources. 

    I agree with Cynthia and Wheezy Me, seeking a second opinion from a different pulmo/allergist and see a gastroenterologist would be a wise next step. 

  • emtwallace

    I'm going to agree with whats already been said.  Get a second pulmonary opinion, see an allergist that also specializes in asthma, report swallowing issues to your GP and see a GI doc.  GI docs can also test for food allergies through tissue samples and I would say ask someone to do a blood food allergy test.  Make sure you're off singulair and have not taken any antihistamines in about 2 weeks or the results will be flawed.  I wasn't told that and tested negative to shellfish, which I have anaphylactic reactions to.  Most importantly, follow care instructions.  I too was diagnosed with adult onset asthma and know what you're going through.  It was life changing and career changing for me.  My best advice for coping is to find healthy ways to relieve stress such as prayer, reading, or taking a walk on your good days etc.  Keep your blinds open, let the sun in and make the best of your good days.  Then during the bad days, find all of the things you're thankful for in your life to cheer you up.  Find something that you enjoy doing and you can do on your bad days.  I know its a lot but don't give up. 

  • Shea

    I really don't like the medication singulair because after taking it I developed a rare disease called churg-strauss syndrome (CSS) that actually the eosinophils surrounded the tissue in my heart and choked it and caused a heart attack and then tbe doctors told me singulair is being correlated with more cases of churg strauss syndrome although causation has not been proven.  At the time of the heart attack my eosinophils were really high and they confirmed diagnisis with a heart biopsy showing high levels of eosinophils in my heart tissues (with CSS the eosinophils get concentrated in tissues). My life was saved by high dose steroids and also a medication calked cytoxan. Steroids like prednisone can get inflammation under control fast and be really helpful, and in most cases you can wean off it and then the inflammation eill be under control. But I understand being concerned about them. With my disease, patients often have to be on a maintenence dose of steroids– mine is 20mg, although I want to get lower. My main allergic trigger is cat and dog dander– even the amou ts carried on others clothing can give ne an asthma attack and flare up my css.

    I also have lots of food allergies and when I was younger was diagnosed with ulcerative colitis and had intestinal surgery– my digestive system is a bit of a mess but I am trying probiotics and strict avoudance of allergens. I carry epipen and benadryl everywhere, aling with a rescue inhaler. My son (age 7) has food allergies and I do the sane for him with carrying a med bag. 

    I also had just given birth to my son and was going through a break-up with his father and it was a tough time for me, I felt it would never get better but I have come a long way the past 7 years, so hang in there! 

    Finding doctors you are comfortable with is a big step. I liked my immunologist the best, but rheumatologist and pulmonologist and allergist are helpful too, I just feel like my immunologist was all those wrapped into one. 

    Since I mentioned benadryl– I do take it nightly for my allergies and it is helpful. 

    I have had doctors tell me I sound clear at times and wheezy at other times. When they say I sound clear, I will say what about this sound (and breathe out hard and it is wheezy,) and they say it sounds more in my throat, and maybe its from using inhaled steroids, and that maybe its vocal chord dysfunction, but an ear nose throat doc said it was not. So I still dont know about that type of wheeze for me but I do think I have more than one type of wheeze going on and that one is sometimes helped by humidity and nebulizing. 

    Since developing asthma I am highlt sensitive to sulfites in foods. Like shrimp, dried fruit, wine.. (i am actually allergic to grapes so I avoid wine anyways but even non-grape wine I react to from sulfites.) I am allergic to apples, grapes, peaches, pears, plums, kiwi, peanuts, all nuts… My don is allergic to soy, nuts, honeydew melon).. My biggest suggestion is food journalling.  My son also have oral allergy syndrone to lots of foods during certain times of year– he cannot eat raw bananas, cucumbers during ragweed season because they have proteins that cross react to ragweed proteins and during certain times of year it will give him itchy mouth and skin if he eats them.

  • Dar007

    Hi and welcome!

    i am also new to an asthma diagnosis and have adult onset. I was reading your post and first, I would like to say I have the highest respect for you – having three kids in my immediate family with autism, I understand. It isn’t easy. For me, one of my triggers is stress.

    Also, you mentioned you have GERD, I have had that for years and it caused the exact problem you are talking about with swallowing food. What happens with me is that the acid reflux can cause a narrowing in the esophagus, causing your throat to feel like it is closing up when you swallow certain foods. A Gastroenterologist can help you with that – they go in with a scope and stretch the esophagus and you are good to go! Once, my specialist said my esophagus had closed to the size of a pencil eraser. It is a scary thing when you can’t seem to swallow. 

    I too have been told by my gp that he hears no wheezing when I go see him, but all my tests point to asthma. I take Dulera for long term, Ventolin for rescue, and Singulair tabs at night (but now I am nervous about that after hearing the heart trouble it can cause!). Sometimes things that are bothering me , medically, just aren’t bothering on the exact day or time of my gp appointments. And he totally understands that. In fact, just caught a bad cold and I was wheezing so loud it woke me up from a sound sleep. Wheezing happens. Maybe not at the right times. Lol I am not as bad as some on here,  the medications I have really work well for me, and I really don’t run into trouble unless I am near a trigger or I catch a cold. 

    Just wanted to say welcome. You came to the right place if you need understanding and information…everyone here is so kind! Hope you are doing ok. 

  • Breatheeasy
    Shea posted:

    I really don't like the medication singulair because after taking it I developed a rare disease called churg-strauss syndrome (CSS) that actually the eosinophils surrounded the tissue in my heart and choked it and caused a heart attack and then tbe doctors told me singulair is being correlated with more cases of churg strauss syndrome although causation has not been proven.  At the time of the heart attack my eosinophils were really high and they confirmed diagnisis with a heart biopsy showing high levels of eosinophils in my heart tissues (with CSS the eosinophils get concentrated in tissues). My life was saved by high dose steroids and also a medication calked cytoxan. Steroids like prednisone can get inflammation under control fast and be really helpful, and in most cases you can wean off it and then the inflammation eill be under control. But I understand being concerned about them. With my disease, patients often have to be on a maintenence dose of steroids– mine is 20mg, although I want to get lower. My main allergic trigger is cat and dog dander– even the amou ts carried on others clothing can give ne an asthma attack and flare up my css.

    I also have lots of food allergies and when I was younger was diagnosed with ulcerative colitis and had intestinal surgery– my digestive system is a bit of a mess but I am trying probiotics and strict avoudance of allergens. I carry epipen and benadryl everywhere, aling with a rescue inhaler. My son (age 7) has food allergies and I do the sane for him with carrying a med bag. 

    I also had just given birth to my son and was going through a break-up with his father and it was a tough time for me, I felt it would never get better but I have come a long way the past 7 years, so hang in there! 

    Finding doctors you are comfortable with is a big step. I liked my immunologist the best, but rheumatologist and pulmonologist and allergist are helpful too, I just feel like my immunologist was all those wrapped into one. 

    Since I mentioned benadryl– I do take it nightly for my allergies and it is helpful. 

    I have had doctors tell me I sound clear at times and wheezy at other times. When they say I sound clear, I will say what about this sound (and breathe out hard and it is wheezy,) and they say it sounds more in my throat, and maybe its from using inhaled steroids, and that maybe its vocal chord dysfunction, but an ear nose throat doc said it was not. So I still dont know about that type of wheeze for me but I do think I have more than one type of wheeze going on and that one is sometimes helped by humidity and nebulizing. 

    Since developing asthma I am highlt sensitive to sulfites in foods. Like shrimp, dried fruit, wine.. (i am actually allergic to grapes so I avoid wine anyways but even non-grape wine I react to from sulfites.) I am allergic to apples, grapes, peaches, pears, plums, kiwi, peanuts, all nuts… My don is allergic to soy, nuts, honeydew melon).. My biggest suggestion is food journalling.  My son also have oral allergy syndrone to lots of foods during certain times of year– he cannot eat raw bananas, cucumbers during ragweed season because they have proteins that cross react to ragweed proteins and during certain times of year it will give him itchy mouth and skin if he eats them.

    Ragweed is a big trigger for me. Banana is a no no for me – causes allergic rhinitis. 

  • Brenda Silvia-Torma

    Hi @Breatheeasy, Welcome to the forums! I also have adult-onset asthma and it was a confusing transition. The people on these forums have been so helpful and supportive, and I am always amazed at how much knowledge everyone has…this community really is priceless!  

    I take 1 puff twice a day of Q-var (80mg), which is down from the 2 puffs twice a day earlier this year. It has helped immensely. My doctor only lowered my dose when she determined that my breathing tests showed that my lungs were getting better. One resource that helped explain to me why I need to continue to take my daily controller is , located at the bottom of that webpage.  

    Also, do you know what your triggers are (in addition to ragweed)? For me, I have real difficulty on days when the air quality is yellow/orange/red. On these days, I wear my vog mask and have managed to prevent some problems. Do you find that you have more difficulty on days when the air quality is poor? You can find out what the air quality is for your city by visiting .

    I'm so glad that you found this forum and hope that you feel better soon!

    Brenda

  • Breatheeasy
    Brenda Silvia-Torma posted:

    Hi @Breatheeasy, Welcome to the forums! I also have adult-onset asthma and it was a confusing transition. The people on these forums have been so helpful and supportive, and I am always amazed at how much knowledge everyone has…this community really is priceless!  

    I take 1 puff twice a day of Q-var (80mg), which is down from the 2 puffs twice a day earlier this year. It has helped immensely. My doctor only lowered my dose when she determined that my breathing tests showed that my lungs were getting better. One resource that helped explain to me why I need to continue to take my daily controller is , located at the bottom of that webpage.  

    Also, do you know what your triggers are (in addition to ragweed)? For me, I have real difficulty on days when the air quality is yellow/orange/red. On these days, I wear my vog mask and have managed to prevent some problems. Do you find that you have more difficulty on days when the air quality is poor? You can find out what the air quality is for your city by visiting .

    I'm so glad that you found this forum and hope that you feel better soon!

    Brenda

    No I am not sure what my triggers are. I am allergic to dust and every pollen out there during fall. So this time of the year I should be ok but looks like I am not. My main issue though is that I could stop an attack as soon as it started with albuterol. I was using it at least 3 – 4 days a week once a day. Sometimes twice a day. Now it’s hard as it’s causing paradoxical spasms. I have to let the attack go down on its own. The problem is my pulmonologist Probably does not specialise in asthma. I have to find the right one. So looking for a new one. I am on singular but I do t like it. It causes confusion and memory issues to the extent where I don’t remember something I did that day and try to repeat the activities. But without it I get very 

  • Breatheeasy
    Dar007 posted:

    Hi and welcome!

    i am also new to an asthma diagnosis and have adult onset. I was reading your post and first, I would like to say I have the highest respect for you – having three kids in my immediate family with autism, I understand. It isn’t easy. For me, one of my triggers is stress.

    Also, you mentioned you have GERD, I have had that for years and it caused the exact problem you are talking about with swallowing food. What happens with me is that the acid reflux can cause a narrowing in the esophagus, causing your throat to feel like it is closing up when you swallow certain foods. A Gastroenterologist can help you with that – they go in with a scope and stretch the esophagus and you are good to go! Once, my specialist said my esophagus had closed to the size of a pencil eraser. It is a scary thing when you can’t seem to swallow. 

    I too have been told by my gp that he hears no wheezing when I go see him, but all my tests point to asthma. I take Dulera for long term, Ventolin for rescue, and Singulair tabs at night (but now I am nervous about that after hearing the heart trouble it can cause!). Sometimes things that are bothering me , medically, just aren’t bothering on the exact day or time of my gp appointments. And he totally understands that. In fact, just caught a bad cold and I was wheezing so loud it woke me up from a sound sleep. Wheezing happens. Maybe not at the right times. Lol I am not as bad as some on here,  the medications I have really work well for me, and I really don’t run into trouble unless I am near a trigger or I catch a cold. 

    Just wanted to say welcome. You came to the right place if you need understanding and information…everyone here is so kind! Hope you are doing ok. 

    Yes acid reflux was the reason my asthma started in the first place. And I was not eating anything that caused reflux. It started when I had very bad nausea and was throwing up during my pregnancy. I then had the worst reflux for the last 3 months of my pregnancy. After that it just stuck. Everyone was talking about what a relief it was to have had the baby. And I was like it made very little difference to my breathing. My DD always had her legs in my ribs during my pregnancy. The proton pump inhibitors help but I dont know if it’s just bad reflux now or allergies to food which I had never had before esp allergy to red velvet cake. THe day I had it my breathing was so bad. I realised later it must be the food colors as I had a bad reaction to outside food again 3 times. But now I react to some foods. 

  • K8sMom2002
    Breatheeasy posted:

    No I am not sure what my triggers are. I am allergic to dust and every pollen out there during fall. So this time of the year I should be ok but looks like I am not. My main issue though is that I could stop an attack as soon as it started with albuterol. I was using it at least 3 – 4 days a week once a day. Sometimes twice a day. Now it’s hard as it’s causing paradoxical spasms. I have to let the attack go down on its own. The problem is my pulmonologist Probably does not specialise in asthma. I have to find the right one. So looking for a new one. I am on singular but I do t like it. It causes confusion and memory issues to the extent where I don’t remember something I did that day and try to repeat the activities. But without it I get very 

    Wow, that's a lot of reliance on rescue inhalers! It sounds like your asthma was not under control at all during that time.

    If you're having paradoxical spasms with your inhaler, it's important that you let your doctor know ASAP. You can also talk with your pharmacist and see if your pharmacist has any suggestions you can take to your doc.

    We've had members here who can't use inhalers because of other ingredients in them … they rely on nebulizers of albuterol or other rescue meds instead, which have no propellants. 

    Your doc (even your GP may be able to help you with this in a pinch) may be able to help you find a rescue med that works — and that's a critical thing, because when you're in respiratory trouble, you don't need a rescue med that causes the exact same problem you're trying to treat.

    If it turns out that nebs work for you, you can get small portable nebulizers to take with you for convenience. Some of them are so small, they're not that much bigger than an inhaler.

  • Breatheeasy
    K8sMom2002 posted:
    Breatheeasy posted:

    No I am not sure what my triggers are. I am allergic to dust and every pollen out there during fall. So this time of the year I should be ok but looks like I am not. My main issue though is that I could stop an attack as soon as it started with albuterol. I was using it at least 3 – 4 days a week once a day. Sometimes twice a day. Now it’s hard as it’s causing paradoxical spasms. I have to let the attack go down on its own. The problem is my pulmonologist Probably does not specialise in asthma. I have to find the right one. So looking for a new one. I am on singular but I do t like it. It causes confusion and memory issues to the extent where I don’t remember something I did that day and try to repeat the activities. But without it I get very 

    Wow, that's a lot of reliance on rescue inhalers! It sounds like your asthma was not under control at all during that time.

    If you're having paradoxical spasms with your inhaler, it's important that you let your doctor know ASAP. You can also talk with your pharmacist and see if your pharmacist has any suggestions you can take to your doc.

    We've had members here who can't use inhalers because of other ingredients in them … they rely on nebulizers of albuterol or other rescue meds instead, which have no propellants. 

    Your doc (even your GP may be able to help you with this in a pinch) may be able to help you find a rescue med that works — and that's a critical thing, because when you're in respiratory trouble, you don't need a rescue med that causes the exact same problem you're trying to treat.

    If it turns out that nebs work for you, you can get small portable nebulizers to take with you for convenience. Some of them are so small, they're not that much bigger than an inhaler.

    Gotta see if they work. I was also told that using reliever without a steroid supplement can cause the spasms. So I have not tried the reliever in a while now after I started udimvvgve steroid inhaler. Kinda scared.

     

    Thanks I’ll discuss this with my allergist during my appointment.

  • Breatheeasy
    Brenda Silvia-Torma posted:

    @Breatheeasy, when is your next appt with your allergist? 

    Brenda

    I am looking for an allergist/immunologist. My insurance lets me make a specialist appointment. So I am going through the list of allergists around. I made a few calls but could not get an appointment as the doctor was away for the holidays. I am making some more calls today.

  • Brenda Silvia-Torma

    Hi Breatheeasy! Great!  One resource for finding an board-certified allergist is to visit the American College of Allergy, Asthma and Immunology's website to search in their service.

    Good luck!

    Brenda