Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Asthma And Casein?


Adelle

Recommended Posts

Adelle Enthusiast

So I've been having shortness of breath at night when I try to sleep. I called my doc and he said it sounds kind of like asthma, "so come in and we'll run some tests and see what we can do" (read: I want to give you medication). Um no thanks.

So I'm going CF (I've been gluten-free since Aug 06) for a while because I've heard that helps.

I'm just wondering if any of you have had experience with this? Is there anything else I could try? How careful do I need to be? I'm going to be as careful as I can, but my dog's food has milk in it (he has allergies and it would be nearly impossible to switch him) can I get CC'd like with gluten?

Thanks in advance.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



lizard00 Enthusiast

I am all too familiar with the shortness of breath...

It might not be so bad if he does give you something, probably just a fast acting inhaler or something along those lines. It's better to be able to breathe than not. (and I am NOT an advocate of handing out drugs!)

Oddly enough, I did my initial elimination diet to see if something was 1)causing my headaches and 2)causing my asthma to kick up. Well, my headaches went away, and my Rxs were filled... so I never had a conclusive answer. BUT, I notice that my asthma does sometimes flare up if I over do it on dairy...

I would first suggest though, checking into some sort of environmental allergy. I'm not sure where you are, but our weather is unseasonably warm, which I LOVE, but is torturous on my breathing. 70 degrees is the perfect temp for whatever allergen makes my airways constrict, so I have been using my meds this week. Most of the time I don't need them, but I always have an inhaler with me just in case. It's not something to mess around with. How long have you been experiencing the shortness of breath? (the DR will want to know, too) True asthma is not something you generally come down with all of the sudden. It could be allergy-induced.

Either way, the shortness of breath is among what I think to be the worst feelings in the world. So, I would try the casein thing until you can make it to the DR. It's not going to hurt. Steam will sometimes help me, or some sort of homeopathic allergy/sinus combination.

I hope you start breathing better soon!!!

Adelle Enthusiast

I highly doubt it's an environmental allergy, I've had this off and on my whole life (but now it's lasting longer than it ever has), and I've moved several times!! So that seems unlikely. I've also had to take allergy meds for another weird reaction (long story there) and it didn't help at all!

It doesn't bother me except at night. It's not like I CAN'T breathe, it's just like I have to think about breathing. Which keeps me awake at night. It's usually cured by opening a window, except that it's too cold to sleep all night like that now, it's unseasonably cold here (I'm near Salem, Oregon).

We've also been trying to get pregnant for over a year, the asthma meds I've heard of are NOT okay to take during pregnancy. So I'd rather just suffer!!

I'm really just resistant to the idea of seeing a doctor. I've had SO many (about 13, I lost count) and NONE have helped me (in fact many caused lasting emotional and physical issues). So while it's not terrible, I'd rather do what I can first!

tarnalberry Community Regular

if it truly is asthma, you *need* to have fast acting bronchodilators on hand, and may or may not need a short course of inhaled or systemic steroids. if it really is asthma, you do *NOT* (repeat *NOT* want to under or not treat it. it can be finicky, and suddenly become much worse - as in "you got to the hospital now, if you want to keep breathing", even if you've *never* experienced such an exacerbation, if you don't keep it managed. and while I am not against alternative therapies and do believe that they can be of benefit, they are - in this case in particular - of no substitute for traditional pharmacological treatment. fortunately, there are a number of things you can do to help yourself, if it is asthma, from becoming dependent on pharmaceuticals in many cases.

(I say all this as someone with relatively mild, fairly stable, cough variant asthma for all of her life. I've never been to the hospital, and I've *once* had to use my rescue inhaler in an acute attack - which really wasn't all that acute. I use it before exercise if I'm out of condition, and the main effects of my asthma are that I'm much more prone to respiratory infections, coughing when I get a cold, extended periods of time for recuperations from viruses, and extremely rapid respiratory deconditioning when I get sick.)

All that said, it may not be asthma (and if they run some good spirometry, they can get a pretty good idea). If you've had any colds, or the flu, or anything else this winter, you may have something lingering that's affecting your capacity to breath that manifests in a similar way, but isn't actually asthma. You may need treatment, you may need to wait it out, you may find just getting some good aerobic exercise helps your body work it out. But you have to be careful with those things, because vigorous aerobic activity can be contraindicated with uncontrolled asthma (especially if you don't have any medication to control it).

Reconsider seeing your doctor- especially if it's affecting your sleep. You can always be upfront and 'negotiate' treatment protocols with him (say, no pharmaceuticals at this time, but if some other method doesn't show results in X weeks, you'll try this not-aggressive plan, and if that doesn't show progress in Y additional weeks, you two will re-evaluate). If he's not willing to work with you like that - get a new doctor. (Some people seem surprised that I suggest this - *every* doctor that I've maintained a relationship with works in this fashion - five (including specialists) in the past eight years. Some times, when I have no idea where I'd want to go with something, I rely solely on the doctor to inform me - and then I go get more educated. Other times, I actively ask questions and negotiate with the doctor about the course of treatment, keeping in mind that negotiation is a two way street. ;) )

lizard00 Enthusiast
We've also been trying to get pregnant for over a year, the asthma meds I've heard of are NOT okay to take during pregnancy. So I'd rather just suffer!!

I'm not sure where you got your info or what meds you are talking about, but that is not correct. If you are using a regular fast acting inhaler, I would be shocked if any DR told you to not use it during your pregnancy. The general thought is this: If YOU are not getting enough oxygen, neither is your baby. I could see that being the case for an inhaled steriod, such as Advair, but other asthma meds are safe. When you are pregnant, you are not the only one suffering if you choose not to use something.

My first DR (when I moved) put me on Advair, which made me crazy, and since I was nursing (and she didn't ask) made him crazy, too. That lasted two days. I went to a new DR and she totally understood why I didn't want to take steroids and gave me a RX for another long lasting inhaler. She then told me it was my choice to fill it or not, but she wanted the option to be there. I understand your apprehension about going to the DR... but as Tarnalberry said, you don't want to find yourself in the hospital in a critical situation.

You said that if you open the window it helps, which makes me believe it is probably something environmental, and the fresh air is helping to clear it out. It doesn't have to be an allergy, asthma can react to different things. For me, certain air fresheners set it off, if I vacuum too much, people with indoor pets, certain cleaning agents, exercise, cold air, the list goes on. I just know what to avoid if possible. So...try the remedies first. Look into certain herbal combos that are specifically geared toward respiration support. And if that doesn't help, please go see a DR.

tarnalberry Community Regular

lizard's comment about long acting inhalers reminded me, if you do reconsider going to a doc about asthma, I would *STRONGLY* encourage you to get a recommendation to a good allergist/immunologist - someone who *specializes* in asthma. they're going to be able to better diagnose you (and yes, other things can manifest as asthma that aren't), better treat you, better monitory you, and better negotiate with you - and give you better options.

one example I'll give is an experience I had - I had a flare up of asthma when I came down with a respiratory infection one winter. my asthma is mild, but the biggest problem it leaves me with is being very prone to minor respiratory infections settling in nice and cozy into my lungs. I thought that's all I had, until I found it very difficult to breath, becoming progressively worse over one day into the evening. unlike my usual asthma symptoms (which involve coughing and other such spasms, as I'm cough-variant), this was like I had a spandex shirt five sizes too small around my rib cage, and my rescue inhaler wasn't helping me do a lot for it.

long story short, I went to an urgent care clinic, as it was the weekend, and my allergist's office was closed, but it wasn't so acute that I needed the ER. the doctor there diagnosed me with pleuritis (infection of the lining between the lungs and the rib cage) along with my viral respiratory infection, and gave me salmeterol (the long acting, non-steroidal bronchodilator that is one of the two drugs that makes up advair) on its own to help keep the bronchi that were spasming from the outer pressure open. I followed up two days later with my allergist, and the first thing he did was add an inhaled steroid, because recent studies (which you guys may have seen last year or the year before) noted that there is an increased risk of death with single use of just the long-acting beta-agonists on their own which is not found when they are taken with inhaled steroids.

my point: there's a lot to know about treating asthma best, particularly if you're on the medication adverse side and being conservative, and a specialist is going to know the most up-to-date and useful, helpful information.

additionally, there is no precaution listed on the PI for advair for pregnancy. inhaled steroids really are much safer than systemic ones. (no, I'm not a huge fan of the drug - it works well for me, but, on long-term use, I'm prone to a number of the lesser-known, but very aggravating side effects. so, when I need it, I generally stay on it for no more than a course of 2-3 months, and then strive hard to maintain good lung function through exercise. until a nasty respiratory virus comes along again... /eyeroll... :) just saying these drugs have a purpose, they don't have to be terribly long term, and there are a number of alternatives and options that can still keep you safe.)

lizard00 Enthusiast

Thanks for that update Tarnalberry! I didn't get Advair until after my son was born, but like I said, the steroids made him CRAZY! I use Serevent, which is just the Salmeterol and I have had no problems. But I don't have to use it all the time. Certain times of the year, and when I start running again. I know that my OBGYN called in my inhaler Rx when I was pregnant ASAP. Good to know about the others for future reference. :)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



gfp Enthusiast

My Dr. thought I had asthma .. until they had me blow in the tube thing...

Anyway this may or may not be appropriate and the important thing is to find out exactly what your dealing with.

For me it turned out to be a combination of things...

1/ I get a Casein reaction which nearly killed me once by blocking my airways with literally glue. However even lesser times it makes breathing labored because of the mucus and stuff.. It seems to be a combination type allergy (the french don't refer to hay-fever but 'allergies') which I find more apt for me at least.. since I react to car fumes etc. far more than clean pollen ...

2/ Opening the window etc makes it sound more allergy like ???

3/ The third and killer was acid reflux... this can literally parallise your lungs when the acid from your stomach gets into the lungs...I actually had an inhaler at one point because it can be really severe.

You don't really have to concentrate on breathing, however much it feels like it does ... (unless you have an asthma attack)... I've been down the same road and its a catch-22 ...like once you start thinking about actually breathing you suddenly can't help it... but if something dramatic happened and your mind switched over you would probably just forget and your body do it naturally... Knowing you can distract yourself from this might help .... especially since you seem to get this at night ..it probably affects your sleep (it did me) ... I almost worried if I fell asleep I'd forget to breath...

lizard00 Enthusiast
I almost worried if I fell asleep I'd forget to breath...

You are the only other person I've heard say that... I used to feel the same way.

Adelle Enthusiast

Well whatever the problem is, I'm 90% sure it's casein related. After staying 100% CF for 2 days and having markedly less issues, I popped a piece of chocolate w/o even thinking (DOH!). Within 20 min I was more out of breath than I have ever been. So I'm steering clear of that.

I've seen 2 allergists who BOTH refused to do any testing. My dad has allergy disorders that make allergy testing wildly innacurate (I don't know the whole story, but he basicaly only reacts to things randomly, but he's not in the picture so I don't know any specifics) and since that's in my medical records, they both said it would be innacurate and so they won't bother. So I'm on my own there.

At this point I don't care if it's a casein allergy, asthma, or something else entirely, avoiding casein makes me feel much better, so I'm going to do it!

tarnalberry Community Regular
At this point I don't care if it's a casein allergy, asthma, or something else entirely, avoiding casein makes me feel much better, so I'm going to do it!

That's definitely a sensible thing to do. :)

Time to develop a taste for dark chocolate! :D (no casein in *most* dark chocolates)

tarnalberry Community Regular
I've seen 2 allergists who BOTH refused to do any testing.

BTW, testing for asthma needn't involve any traditional allergy testing. (Some people's asthma triggers - including my own - aren't allergic in nature. Mine are chemical irritants like propellants, smoke, and chemical fumes.)

gfp Enthusiast
You are the only other person I've heard say that... I used to feel the same way.

strange I said the same thing above...

However, like I say if the house was burning down you'd suddenly find you forgot about it and carried on breathing...

The same for falling asleep but its not the easiest thing...

Being aware you will not stop breathing is a big help... distract yourself however you an, be it a TV (not my choice) or reading a book etc. but basically theless you think about it the easier it is.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    5. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,079
    • Most Online (within 30 mins)
      7,748

    Terra33
    Newest Member
    Terra33
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.