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

Feel Like I Can't Breathe


Paeonia

Recommended Posts

Paeonia Newbie

I am a 29 year old female and I feel awful. I constantly feel like I can't breathe, I have moments of feeling "surreal," I am tired all of the time, I have severe IBS, am lactose intolerant, I have aches and pains in my joints and neck and I don't have insurance. The breathing issue happens every day and usually multiple times a day anywhere from a couple minutes to a couple hours in length. I can't remember the last time I woke up feeling refreshed. I had a blood test for Celiac Disease many years ago, but it was negative. I was being treated for IBS and GERD while I had insurance more recently, but, since I told the doctor I had already tested negative for celiac disease, it did not come up again. Things seem to be getting progressively worse to the point that I feel like I'm dying. I'm really scared and confused. Hopefully I will have insurance again soon, but I am considering trying to go gluten and lactose free to see if I get any relief in the interum. If anyone has any suggestions for me, I'd really appreciate it.


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

I am a 29 year old female and I feel awful. I constantly feel like I can't breathe, I have moments of feeling "surreal," I am tired all of the time, I have severe IBS, am lactose intolerant, I have aches and pains in my joints and neck and I don't have insurance. The breathing issue happens every day and usually multiple times a day anywhere from a couple minutes to a couple hours in length. I can't remember the last time I woke up feeling refreshed. I had a blood test for Celiac Disease many years ago, but it was negative. I was being treated for IBS and GERD while I had insurance more recently, but, since I told the doctor I had already tested negative for celiac disease, it did not come up again. Things seem to be getting progressively worse to the point that I feel like I'm dying. I'm really scared and confused. Hopefully I will have insurance again soon, but I am considering trying to go gluten and lactose free to see if I get any relief in the interum. If anyone has any suggestions for me, I'd really appreciate it.

Hello and Welcome!

While none of us would safely presume to diagnose you, there might be a possibility that you may have a gluten allergy and/or your gluten intolerance has reached a new level. I would suggest that you continue to seek a professional medical opinion.

You can go gluten free. But you must know, that if you choose of pursue further medical testing for Celiac, it will compromise your findings. Many here are self-diagnosed, and feel quite comfortable in those shoes.

If you are miserable, try a complete 100% gluten free diet. Or, you can request a full Celiac Panel from your doctor. It might be worth the expense at this point.

rosetapper23 Explorer

I recently experienced a deficiency of B12 and felt as though I couldn't breathe. I would wake up several times a night gulping for air, and during the day I just dragged around. Your symptoms fall in line with a B12 deficiency, and although I don't believe in supplementing when it's not necessary, it wouldn't hurt you to buy some sublingual B12 to see if your symptoms are relieved. If not, then discontinue taking the B12. You might then try taking iron pills to see if you have iron anemia (which also causes fatigue and breathing issues), but, again, discontinue the iron if you don't see any easing of your symptoms.

Your symptoms also are indicative of a possible thyroid problem--that won't go away without a diagnosis from a doctor and medication.

Since you don't have insurance, try supplementing with sublingual B12 and/or iron...and hope for the best. If neither of these supplements helps you, you should probably visit a doctor for some basic tests.

  • 3 years later...
precious007 Newbie

I have the same issues for a very long time now, in my flares I have periods of the day where I feel that I cannot breathe at all, gasping for air all the time. My lung x-rays and CT scans all come back clear, you are not alone.

SMRI Collaborator

I have the same issues for a very long time now, in my flares I have periods of the day where I feel that I cannot breathe at all, gasping for air all the time. My lung x-rays and CT scans all come back clear, you are not alone.

 

This is an old thread but have you been tested for allergies?  Gasping for air all the time is not typically a Celiac reaction but an allergy reaction...or something else.  Are you overweight, out of shape, have you seen an allergy doctor or a pulmonogist?

ravenwoodglass Mentor

I have the same issues for a very long time now, in my flares I have periods of the day where I feel that I cannot breathe at all, gasping for air all the time. My lung x-rays and CT scans all come back clear, you are not alone.

The inflammation from celiac reactions can cause asthma like problems. Has your doctor evaluated you for asthma? I was on both an oral med and an inhalor before I was diagnosed. Once the inflammation calmed down I no longer needed either med. Perhaps the next time you have a 'flare' you could get in to see the doctor so he can figure out if that is what is happening and perhaps give you something to take when a flare happens. 

precious007 Newbie

I haven't been tested for allergies but that I am allergic to so many things, I haven't been tested for Celiac either. 

 

I am going through my worst flare ever (almost bedridden), have severe constant dizziness, loss of balance, the ground seems to be moving underneath me, leg weakness, whole body exhausted, can't think straight, burning sensation on skin all over, head pressure, tingling, pinching, stabbing sensations, muscle weakness, muscle pain, joint pain. (I have over 15 diagnoses so far) so I want to make this short because I can go on for hours and still didn't take any tests yet for - 

 

- Thyroid 

- Celiac

- Lupus

- Metal Toxicity 

- Food intolerance, allergies. 

 

Something is going on: I have 5 diagnoses on my spine, chronic sinusitis, candida, been diagnosed with lyme just to name a few, but I tend to believe I also have celiac and lactose intolerance since I get bloating from gluten and lactose and also think my problems stem from high heavy metal toxicity and candida (I have a very low immune system)

 

I am not recovering for two months now from my last flare, been in ER with galbladder issues, abdominal bloating and pain, barely standing on my feet. 

 

The only problem is that I do not afford testing and seeing so many specialist it can take a year or two to get to the root of the problems which I think is heavy metal toxicity. My GP can only refer me to one specialist per month and I will be admitted for a detailed checkup of digestive system soon. It's a start .. 

 

For now I am gluten free, soy and lactose free just to keep myself on the safe side but I still feel extremely ill and almost bedridden. 


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



Celiac.com Sponsor (A8-M):



gilligan Enthusiast

Could you be having anxiety attacks?

precious007 Newbie

Could you be having anxiety attacks?

 

No, I have anxiety issues for 10 years now - these are not anxiety attacks. 

 

I have bad digestive issues, faint like feelings from anemia possibly, 5 diagnoses or so on my spine, almost sure I have celiac and heavy metal toxicity along with esophagus candida that has invaded my digestive tract. (gallbladder crisis lately, been in ER 4 times, I will be admitted in hospital for a full check up. 

 

Anxiety always has a cause (even a small imbalance in the body), and NO anxiety does not make you bed ridden, in pain all over and barely able to stand or walk.

SMRI Collaborator

Ask your GP to run a full panel for immune deficiency.  Ask for your total IgG and the 4 subclasses as well as all of the rest of the Ig____'s.  (A, E, M, etc.).  

Why can they only send you to one specialist/month?  That is ridiculous.  

ravenwoodglass Mentor

 

For now I am gluten free, soy and lactose free just to keep myself on the safe side but I still feel extremely ill and almost bedridden. 

You can not be tested for celiac if you are not eating gluten. If you plan on being tested you need to start eating gluten again.  At least a couple of slices of bread a day for a couple months.

You don't need a specialist to order the blood test. Your GP can do that. If those were positive then you would likely be referred to a GI for an endoscopy.  

precious007 Newbie

I live in Romania and as far as I know I can only see a specialist per month, which is ridiculous because I need to see at least 4 or 5. Once you a specialist, IF you get a diagnosis then your GP has the obligation to write the monthly prescription for all the medication, i.e if you see 5 specialist during and you have 5 diagnosis then your GP has to write 5 prescriptions for you every month (the insurance only covers some of the medication, usually 50%, and you're allowed to get your medication for up to a certain amount of money - I need to call the insurance offices to get a clearer answer on this, but first I need to see an GI asap because I have really weird stuff going on my digestive tract. 

 

I might be wrong about seeing just one specialist, I'll just have to get more information on this. There are certain restrictions that's for sure. But once you're admitted to the hospital and they do find out something is wrong, then you can see multiple specialists while in the hospital so they can rule out all diseases. 

 

Quite complicated, I need more information on this, I stayed stick for years and this is my forth flare, I have been ignorant until things got quite bad. 

 

Hopefully it's nothing serious, even though I already have dozens of diagnosis, and suspect IBS or another GI issue which doesn't look good to me.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,746
    • Most Online (within 30 mins)
      7,748

    Hughesy
    Newest Member
    Hughesy
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Russ H
      The EMA test is an old and less sensitive test for anti-tTG2 antibodies. It relies on a technician using a microscope to check for fluorescence of a labelled substrate (typically monkey oesophagus or human umbilicus), giving a simple positive/negative result. It is similar to running a standard anti-tTG2 test but with a high cut-off, making it more specific but less sensitive. Transient rises in tTG2 can be caused by e.g. viral infections and inflammation. Very high levels of anti-tTG2 (>x10 standard range) are almost certainly coeliac disease but moderately raised levels can have several causes apart from coeliac disease. Other food allergies can cause villi blunting but that is much rarer than coeliac disease or other non-coeliac causes. Not All That Flattens Villi Is Celiac Disease: A Review of Enteropathies
    • Theresa2407
      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
×
×
  • 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.