Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Please Help, I Cant Breathe And Im Terrified


alephknot

Recommended Posts

alephknot Rookie

there could be many things contributing to my current health predicament... but any advice would be sooooo very much appreciated. if you dont want to read my spiel, you can skip to the bold lettering... but if you have five minutes and are feeling extra self-less, and or sympathetic... i promise, your response will not go unappreciated.

i ended up at the er a few nights ago, 3 am, been having breathing problems for a few days already, but it got progressively worse. i think i was glutened, but then again, i feel sick most of the time these days so it is hard to tell. i have severe bloating, constipation, chest pain, back pain, neck pain, and cant get a full breath (maybe one every 25-40 minutes) . the er doctors were the most insensitive, belittling people i have ever came in contact with. they did not listen to my complaints or fears, nor did they take into consideration all my other health problems... celiac, autoimmune thyroid, etc etc... i was there for 4 hours, talked to the doctor for 3 mins, he diagnosed me with bronchitus and asthma, gave me an inhaler which doesnt help at all (because i dont have asthma) and said he'd be back with antibiotics.. which never happened and also denied me of anything to reduce my extreme stomach discomfort. although i should be used to this "its all in your head" response, it is extremely triggering for me, on so many different levels and im not sure how to process it. to think that your "emergency" lifeline doesnt give a poop, and wont do poop for you... is terrifying to me.

so, here i am, i few days later, still not breathing well... completely consumed by it. the two most innate human functions, eating and breathing, are destroying me... im really scared, im 24 and i feel like im dying a good portion of the time, even though im eating all the right things, taking a bunch of supplements, seeing a naturopathic doctor... actually trying to take care of myself. when i first went gluten free, i felt amazing, reborn, for about two months.. than it all went to crap again. and i can handle most crap, but not being able to breathe, i can not handle that.... and i think that the breathing seems to correlate with my thyroid, and or being glutened... but i just dont know anymore, there seems to be so much damage to my body, that i dont know what is causing what.

if anyone knows some sort of medicine i can take to relieve bloating and gas... please, do tell.

and if anyone knows what this weird airbubble thing i feel just under my lung when i try to breathe, please do tell.

and if anyone knows something i could take to be able to breathe, please do tell.

and if anyone has any suggestions as to how to emotionally get through utter hopelessness, isolation and panic, please tell me...

i have some pretty serious issues with anxiety, depression, eating disorders and addiction... and feeling chronically ill, with little to no validation is starting to take a toll on me that im not sure i can deal with... so, really, any advice, could be potentially life saving for me...

thank you in advance to anyone who replies.

kelly

p.s. im sorry to sound so victimish, and i write to this forum because i know there are people here who have or are experiencing a lot worse things than me... and who are or have gotten through them. i am pretty new to this all, and i have found a huge source of comfort from reading what you all have been through, or are going through. thanks again.


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



Celiac.com Sponsor (A8-M):



AliB Enthusiast

Oh Kelly - I can feel your pain. Not knowing what is going on is just the worst thing - and very frightening. My symptoms have not been all the same as yours, but I can sympathise with your fear as I have been there too.

Can I ask a few questions?

How long have you been gluten-free?

What do you eat?

Have you experimented with eating different foods at different times, and do you get the problem all the time, or only after eating?

Are there times when you do get respite from the problems?

I see this so often. So many times people say that they felt wonderful when they first went gluten-free but it didn't last.

The gas and bloating is an indicator and is likely what is behind the problem. Mine, if I get any doesn't affect my lungs, it affects my heart and gives me palps and a feeling it's going to burst out of my chest, but I know it is my digestion that is the problem.

Anyway, if you can answer my questions that will help me get a better understanding of what is going on.

If you don't get an immediate answer it is because I am in the UK and it is gone 1am here and I should be asleep!

Ali.

Di-gfree Apprentice

Hi Kelly, Are you on thyroid replacement? I'm on desiccated thyroid hormone for my Hashimoto's, and one of my hypo-symptoms is 'air hunger' - like I can't breathe very well, or get enough air. Do you think you're currently on the hypo side?

Just wanted to add on, that I've anxiety, panic, oh just lots of problems, too; and I recently found out my ACTH is very low, indicating that I am hypopituitary and have secondary adrenal insufficiency on top of everything. Have you had ACTH and AM Cortisol checked (at the same time)? Also, low ferritin/and B12 can cause air hunger, too, I believe.

Dianne

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,644
    • Most Online (within 30 mins)
      7,748

    Wagner
    Newest Member
    Wagner
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • junell
      I've been gluten free for 5 years, as well as being intolerant to gluten, my list of intolerances is growing.. from dairy, eggs, soya, yeast, to mushroom, garlic, onion, spinach and quite a few in-between, basically my diet is gluten-free cornflakes, rice, banana, almond milk and fish anything else causes bloating, severe abdominal pain, mucousy diarrhoea, lethargy, muscle and joint pain, kidney pain, headaches, and mouth ulcers. I've been told it's IBS, I think it's more than that... I've been sent to a gastroenterologist who tested for coeliac, if course it came back negative because, as I told him, I haven't eaten gluten for 5 years, he's asked me to eat gluten for 4 weeks and redo the blood test, so I've tried small amounts of crispbread for 3 days and am in agony, I can't do this for 4 weeks and then however long it'll take to recover. Has anyone got any suggestions, and is multiple food intolerances a common side effect of coeliac? I'm struggling! And struggling to be taken seriously 😒 
    • cristiana
      I think going back to your GI isn't a bad idea - my visits to the GI did not stop following my diagnosis as I had annoying issues on and off for some time.  Thankfully he is a fantastic GI, with  a great sense of humour, so it wasn't a chore to see him again although I'd rather not have had to, obviously!  But I needed my mind to be put at rest as my symptoms didn't seem to go away overnight as I'd hoped they would.  Initially I recall he recommended I went Dairy Free for three weeks, and he told me it would take that time to see an effect.  At that time, even lactose free milk went straight through me, so it is important, I would say, to even avoid that during a Dairy Free trial. My ongoing symptoms were bloating which did respond a bit to that trial.   However, within about 18 months there was a return to a very sore stomach, plus various aches and pains.   It turned out some gluten was sneaking in with my iron supplement (I was buying Floradix instead of Floravital), but I also think the dishwasher, the oven and eating out were contributors, too. Before my numbers normalised (from memory, about eight years!) I had several follow up appointments and a few more tests, but things gradually did get better.  Having read many accounts on this forum over the years, I don't think it is uncommon for symptoms to get a bit worse before getting better, that was certainly the case with me.  Your gut is damaged so you may well have issues digesting other food in the short term. But do try to be as scrupulously gluten free as you can possibly be as a first step, and I'd definitely try a three week Dairy Free trial.   Your villi because they are damaged are not able to create the lactase required to digest dairy at this time so you may well see some improvement if you come off dairy for a while.  Perhaps keeping a food diary of what you eat, where you eat it, whilst a bit onerous to do, will help identify foods that are causing issues.  For a while, apart from oats, I found peas, lentils and soya products hugely aggravating.  Things should calm down.
    • Rejoicephd
      Thankfully those are normal. B12 was on the low end of the normal range when I first got diagnosed. When I last got it checked, it had come up a lot (455 last time checked).
    • Scott Adams
      You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/  I didn't notice any gluten ingredients in Kirkland Almond non-dairy beverage, however it does contain Locust Bean Gum. Some gums may cause IBS-type issues in some people with celiac disease or gluten sensitivity:    
    • trents
      Have you had B12 levels checked?
×
×
  • Create New...