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

Well I'm Officially A Mess


Renegade

Recommended Posts

kareng Grand Master

 

 but guess I'll waste an entire Saturday

 

 

But you are so sick....what else do you have to do?  Really, from what you are saying, I'm not sure why they haven't sent you home from work.  You couldn't possibly be able to do a job right now. 


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



Celiac.com Sponsor (A8-M):



Renegade Contributor

But you are so sick....what else do you have to do?  Really, from what you are saying, I'm not sure why they haven't sent you home from work.  You couldn't possibly be able to do a job right now. 

I"m not, but I don't have much work to do, and I just fake being ok, that's what you do when you have no other choices but pay your bills, you cope however you can.

 

All those symptoms hit me right when I had to do job hunting, it wasn't in my plans to get that sick then it got worse and worse.

 

I'm going back to my parents home at the end of the month and taking off work as I can't do crap anymore, I'm on a contract and got 3 weeks left to do.

answerseeker Enthusiast

Shortness of breath is a medical emergency and therefore they see you right away.

I've been to the ER twice for my asthma, each time they took me back immediately.

I never had to wait. Any heart or breath problems is a medical emergency.

I gave you advice on your post about the sob a few weeks ago. Honestly I don't see how you can still cope with it. I'm thinking the sob is anxiety because I know first hand how asthma can affect me and how quickly it can become a life or death situation. But if your truly experiencing an inibility to take in a deep breath and are using your abdominal muscles to breath, they treat that immediately.

Someone had mentioned in your thread about the shortness of breath that it sounded like your having anxiety attacks. At this point I agree. Anxiety can cause abdominal pain too.

Renegade Contributor

Shortness of breath is a medical emergency and therefore they see you right away.

I've been to the ER twice for my asthma, each time they took me back immediately.

I never had to wait. Any heart or breath problems is a medical emergency.

I gave you advice on your post about the sob a few weeks ago. Honestly I don't see how you can still cope with it. I'm thinking the sob is anxiety because I know first hand how asthma can affect me and how quickly it can become a life or death situation. But if your truly experiencing an inibility to take in a deep breath and are using your abdominal muscles to breath, they treat that immediately.

Someone had mentioned in your thread about the shortness of breath that it sounded like your having anxiety attacks. At this point I agree. Anxiety can cause abdominal pain too.

 I saw a surgeon for my 'what I thought was a cyst', that was last Tuesday and I thought, oh wow I can have someone look up for my other symptoms and shortness of breathe. He asked me if I had health problems, then i started to explain to him all my problems, and shortness of breathe, then he said, do you take medications? I told him only vitamins and probiotics.

 

He clearly just wanted to hear that I was in perfect shape, then looked at my cyst and told me it wasn't one and sent me home and that if i wanted further help i should see my family doctor.

 

Yup, been using my abdominal muscle for the past month and a half but clearly it's all in my head, I am just being anxious, I'm eating way more peanuts then i mentioned. Thank you for all thinking I'm faking my symptoms like doctors always do, I am going to the clinic on Saturday and from there I'm no longer going to waste my time on this forum.

 

And I doubt shortness of breathe makes your intestines do a bunch of noise, give you the feeling like your gut is fighting a war, give you undigested food in your stood and constipation, ya anxiety...

answerseeker Enthusiast

That's why I said go to the ER. In the ER shortness of breath is a medical emergency. But it seems you don't want to take any advice that has been given.

A surgeon is not going to treat shortness of breath

kareng Grand Master

 I saw a surgeon for my 'what I thought was a cyst', that was last Tuesday and I thought, oh wow I can have someone look up for my other symptoms and shortness of breathe. He asked me if I had health problems, then i started to explain to him all my problems, and shortness of breathe, then he said, do you take medications? I told him only vitamins and probiotics.

 

He clearly just wanted to hear that I was in perfect shape, then looked at my cyst and told me it wasn't one and sent me home and that if i wanted further help i should see my family doctor.

 

Yup, been using my abdominal muscle for the past month and a half but clearly it's all in my head, I am just being anxious, I'm eating way more peanuts then i mentioned. Thank you for all thinking I'm faking my symptoms like doctors always do, I am going to the clinic on Saturday and from there I'm no longer going to waste my time on this forum.

 

And I doubt shortness of breathe makes your intestines do a bunch of noise, give you the feeling like your gut is fighting a war, give you undigested food in your stood and constipation, ya anxiety...

 

 

Huh?  What cyst?  Obviously you weren't having SOB when you saw the doc.  Abdominal muscles?  Giving us misleading info about what you are eating? Can't take off to go to the doctor but you actually did?

 

I'm so confused.  :huh:

answerseeker Enthusiast

"And I doubt shortness of breathe makes your intestines do a bunch of noise, give you the feeling like your gut is fighting a war, give you undigested food in your stood and constipation"

Actually it does. My asthma has been directly related to my gut issues, confirmed by my doctor. When my gut is unhappy it triggers my asthma. I ended up admitted to the hospital for an asthma attack that almost took my life, all because of a spaghetti dinner I ate. (This was before gluten intolerance diagnosis)

I may not be an expert on all the gluten issues as I'm still learning, but when it comes to asthma I am confident I know what I'm talking about. It's been a thorn in my side for the last 1 1/2 years.

And constipation? The Bain of my existence. Everything you mentioned I have lived.


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



Celiac.com Sponsor (A8-M):



answerseeker Enthusiast

Yeah the cyst thing just threw me too.

kareng Grand Master

"And I doubt shortness of breathe makes your intestines do a bunch of noise, give you the feeling like your gut is fighting a war, give you undigested food in your stood and constipation"

Actually it does. My asthma has been directly related to my gut issues, confirmed by my doctor. When my gut is unhappy it triggers my asthma. I ended up admitted to the hospital for an asthma attack that almost took my life, all because of a spaghetti dinner I ate. (This was before gluten intolerance diagnosis)

 

 

 

Yeah...lots of people with asthma vomit or get upset stomach/intestines when they have an attack.  Anxiety can cause BOTH SOB and digestive issues.

 

But I think this was said by various people over various threads to Renegade.  The whole thing is getting stranger.

Renegade Contributor

Huh?  What cyst?  Obviously you weren't having SOB when you saw the doc.  Abdominal muscles?  Giving us misleading info about what you are eating? Can't take off to go to the doctor but you actually did?

 

I'm so confused.  :huh:

 

I gave no misleading information, back when I came here I mentioned the cyst, I had this appointment for over a month, it wasn't an appointment for my celiac symptoms. The sob comes and goes, im having it all the time, but clearly of course it looks like anxiety anyways, abdominal muscles, what about it? Givng misleading info about what I eat, when did I do that?

 

Ya you probably right, it was all in my head, thanks.

mommy2krj Explorer

You've been given a lot of really good advice. Most of the people here have lived through symptoms like yours or worse and they are telling you what you need to do. But, like has been noted...we're not doctors....and none of the advice will help if you don't actually heed it.

 

I don't think I said to not eat for weeks (though I haven't gone back to check) and if I did...I meant days. It was late when I was responding.

 

Elimination diets don't take hours. They take days...some take much longer before people know exactly what they can and can't eat.

Shortness of breath isn't a "I'll deal with it later" issue, it's a deal with it NOW issue.

My 6 year old has allergy induced asthma. Cats are the worst offenders but he's allergic to trees and such as well. His asthma isn't the typical can't breathe asthma either. He coughs and coughs and coughs. Nonstop. At night. He can be completely symptom free during the day and then cough all night. Only other thing that is noticeable is a depression near his chest bone. Inhalers have never helped either. We have to keep him constantly dosed with 3 different allergy meds (though Singulair is used for both allergies and asthma). Not something we play around with.

 

You're going to be hungry. Deal with it. Until you know what you can and can't eat it's a matter of being hungry but knowing that you're working on fixing it by eating broth and bland nonreactive foods or being hungry knowing that you have no idea why and you're just going to keep making yourself sick. That part is ENTIRELY up to you. ENTIRELY.

Hell...you could have a regular ALLERGY to wheat instead of Celiac and have similar symptoms to what you're having. Or an allergy to peanuts or any of the things you're eating. It's a pain to figure out what it is but if you aren't willing to do what needs to be done then you aren't going to figure it out. That's not on us or on the doctor....that's on you. So give yourself a kick in the rear, make a plan and stick to it.

answerseeker Enthusiast

Shortness of breath isn't a "I'll deal with it later" issue, it's a deal with it NOW issue.

 

 

^ exactly ^ but it's what we have been saying for weeks now!

 

If I were short of breath and using my abdominal muscles to breath I sure wouldn't be on this board, I'd be at the ER

SusanB26 Newbie

Hell...you could have a regular ALLERGY to wheat instead of Celiac and have similar symptoms to what you're having. Or an allergy to peanuts or any of the things you're eating. It's a pain to figure out what it is but if you aren't willing to do what needs to be done then you aren't going to figure it out. That's not on us or on the doctor....that's on you. So give yourself a kick in the rear, make a plan and stick to it.

 

I have read this entire thread and I have to agree that this sounds like an allergic reaction to something.  I felt horrible even being gluten free, until I completely removed, even trace amounts, the allergens that I tested positive for.  I didn't play any guessing games as I felt sicker and sicker as time went on.  I made an appointment with an allergist and was tested.  In my case it's a rare allergy of onion/garlic (shallots, chives, etc) but once I found out what was wrong, I took it one day at a time and within a week or 2 felt much better.  I keep benadryl with me at all times as this helps slightly, and I do know within minutes if I've eaten something I shouldn't have.  For example, I cannot eat a salad that had raw onion on it that someone simply removed, or a bit of ketchup on a fry since it has onion powder in it.  I was sick every single day from these little things that I never knew I was ingesting.  I had shortness of breath, diahrrhea, stomach pain, heartburn,  migraines and more.  Gluten free helped remove a lot of it, but a reaction will come on in about 3 minutes and last for 24 hours if I eat something I'm allergic to.

mommy2krj Explorer

 

I have read this entire thread and I have to agree that this sounds like an allergic reaction to something.  I felt horrible even being gluten free, until I completely removed, even trace amounts, the allergens that I tested positive for.  I didn't play any guessing games as I felt sicker and sicker as time went on.  I made an appointment with an allergist and was tested.  In my case it's a rare allergy of onion/garlic (shallots, chives, etc) but once I found out what was wrong, I took it one day at a time and within a week or 2 felt much better.  I keep benadryl with me at all times as this helps slightly, and I do know within minutes if I've eaten something I shouldn't have.  For example, I cannot eat a salad that had raw onion on it that someone simply removed, or a bit of ketchup on a fry since it has onion powder in it.  I was sick every single day from these little things that I never knew I was ingesting.  I had shortness of breath, diahrrhea, stomach pain, heartburn,  migraines and more.  Gluten free helped remove a lot of it, but a reaction will come on in about 3 minutes and last for 24 hours if I eat something I'm allergic too.

Oh. Oh that really stinks! Right now we're handling going gluten free ok....but given the amount of onions and garlic we use....I think that would be much, MUCH more difficult! Glad you're feeling better though. :)

AlwaysLearning Collaborator

I haven't read all of the replies, but I'd lay off the ginger tea immediately. Sure it is good for you - but only if you're only drinking one cup. More than that and it will start to cause other problems (as if you were taking a pharmaceutical) and it will acidify your body.

I also think that it may be time to look outside the celiac forum for help because from this and previous posts, gluten doesn't appear to be the main issue that is causing your problems, and there are limits to how much the lay persons on the forum can help when someone is trying to self diagnose, especially when they aren't seeing doctors or getting tests run. 

Renegade Contributor

Saturday im going to the E.R, most likely to be told im fine and go home.

SusanB26 Newbie

Saturday im going to the E.R, most likely to be told im fine and go home.

I understand it can take time to get an appointment in Canada, but why not see a gastro or an allergist and be tested?  Until you do, you are your very own science project and there are too many variables to make an accurate diagnosis on your own.  Like I said from my example-  Certain things felt better once I went gluten-free, but I was not really better until I removed every trace amount of the allergen that I never knew I was allergic to, and was not allergic to as a young adult.  I spent days just wanting to lay down.

SusanB26 Newbie

Oh. Oh that really stinks! Right now we're handling going gluten free ok....but given the amount of onions and garlic we use....I think that would be much, MUCH more difficult! Glad you're feeling better though. :)

 

Oh it's SO much more difficult than being gluten-free!  There is onion, garlic, shallots, chives, etc in everything.  I can find many great gluten-free items, but then I read the label and it contains my allergens so I'm stuck.  The biggest thing that I am sad about is simply pizza.  I've found excellent replacements for everything but pizza.  I make my own (with homemade sauce) and it's ok but it's not real pizza.  We live only 20 miles outside of NYC so pizza is a big deal around here. 

 

I try to lay off dairy too which has also been pretty easy, many good products out there.  But what if I was actually allergic to dairy and the other main allergens like corn, nuts, soy etc.  It could be much much worse really.

notme Experienced

 The biggest thing that I am sad about is simply pizza.  I've found excellent replacements for everything but pizza.  I make my own (with homemade sauce) and it's ok but it's not real pizza.  We live only 20 miles outside of NYC so pizza is a big deal around here. 

 

i feel ya!  i'm from northern nj and i cut my teeth on pizza crust lolz - that's the only thing i haven't found/made that is 'right'   :(   

SusanB26 Newbie

i feel ya!  i'm from northern nj and i cut my teeth on pizza crust lolz - that's the only thing i haven't found/made that is 'right'   :(   

Just imagine it not only with a gluten-free crust but onion and garlic free sauce too.  Bleh.  Might as well go for vegetarian cheese and just call it something else altogether! Ha!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,035
    • Most Online (within 30 mins)
      7,748

    bostonbell
    Newest Member
    bostonbell
    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

    • Jmartes71
      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
×
×
  • 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.