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

Breathing Problems


dianegf

Recommended Posts

dianegf Newbie

This is my first time here. I discovered I was gluten intolerant, about 5 years ago, by conducting the elimination diet. I've been having some breathing problems lately and wondered if this was common with celiac disease or GI. Also, I'm curious as to where the line is drawn between GI and celiac disease. Take care. Diane


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

hi diane-----the line is very slim--gluten intolerant means you cant have gluten--celaic disease simply means the gluten has damaged your intestines severely--you can be intolerant and not have severe damage as of yet, but if you dont go gluten-free then the damage is imminent-----as for your breathing, maybe you should check to be sure it isnt asthma---now with me--the longer i am gluten free the more allergies seem to pop up--i am soy limited and corn limited too--i just spent 6 days ingesting soy unknowingly and have had the worst headache with ringing ears, sleepless nights, joint pain-----i aslo will have breathing problems with many scents---orange cleaners make me gasp for air and there are many scents that make me react--different bath and body works scents are terrible for me-----so, it could be gluten intoerant related------deb

dianegf Newbie

Deb,

Thanks so much for your reply. Even though I have been gluten-free for years there is still so much I don't know. I figured out my gluten intolerance through an elimination diet and trial and error. I'm thinking that I should pursue some more extensive testing. Even though I'm feeling much better I still have issues that are unexplainable. Take care. And thanks again. Diane

MySuicidalTurtle Enthusiast

Some people do have breathing problems but you don't find them as much. It could be related or maybe like Deb said you could be having reactions to something that never bothered you.

Good luck!

Rikki Tikki Explorer

Diane:

I don't know, the same thing has been happening to me since December. I have been poked and prodded so much I feel like a human pin cushion.

So far, the doctor hasn't been able to find out what is wrong. The pressure in my chest is awful and my pulse rate is about 114 continually.

It feels like all the years the doctors and finally even myself thought I was crazy only to find out it was celiac.

I hope you find out what is wrong. However, I wouldn't go back on gluten to see if it is related, that's not worth it.

Sally

dianegf Newbie

Sally,

You are right, and I would never go back to gluten. I tried that once and felt worse than the worse hangover you could imagine. I'm thinking it is time to try the elimination diet all over again to see what other allergies I may have. Ahhhh! But it is well worth it if I can feel better yet. The pressure in my chest is very disturbing, expecially when I lay down at night. I've had treadmill tests and don't seem to have any heart issues. Back to the drawing board I guess. Thanks for your reply. Take care.

Rikki Tikki Explorer

Diane:

That is so odd, the same thing is going on with me. My doctor thinks I am nuts. I have a hard time believing it is related to the celiac though. Mine is pressure in my chest, it never goes away. My heart beats so fast and I am so tired.

Mine seems to be related to eating and drinking? It's so bad that I have been eating just one meal a day and don't want to lose weight. I also have pressure in my right ear, my upper back hurts to breathe. My doctor diagnosed pnuemonia back in December but I have never really felt better since then. It started off not to bad, pressure under my left breast that eventually moved to under my right breast, and now this. Somehow it's related and I am at the point that I can't handle it anymore. I did have the endscopy again and it showed the villi that was damaged is now healed so I am not ingesting gluten.

Please let me know if you find out what is wrong.

Sally


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



Celiac.com Sponsor (A8-M):



cdford Contributor

Some of us out here have asthma and other breathing problems that are directly associated with the celiac problem. I never had asthma or other breathing problems until the celiac had done its damage. Over time being gluten-free, the worst of it has settled down. It did this for all the gluten-free folks in my home. It doesn't take much gluten to trigger it again, though.

Is it possible that you are still dealing with the longer term effects of the pneumonia or one of the medications you were given? Some of the breathing treatments can cause fast heart rates and some of the other symptoms you mentioned. Also, if they gave you medications without carefully checking to ensure that they were gluten-free, it could have caused a set back in the celiac.

Pneumonia is a tough one to get over under the best of conditions. The last time I had it was terrible to get past and took an extended period of time even once the primary problem was cured.

dianegf Newbie

Sally,

How are you doing with your breathing problems? I'm doing better but still have problems getting a deep breath. I've gone back to the basics, reading every label very carefully and researching all the foods that don't say gluten-free. Looking on the bright side, my diet is a much healthier now then it was before I discovered my gluten intolerance. I'm currently not eating any corn, dairy, chocolate, eggs and seafood. I'll slowly try them again, one at a time of course, and see if anything else, besides gluten, is giving me problems. I am sick and tired of feeling sick and living in a fog half the time. I can barely remember writing last week because I was feeling so crappy. At least I know it is gluten and not Alzheimers. That's what I thought I had for a long time.

For those of you out there that are seeing a traditional doctor, and that doctor doesn't acknowledge food allergies as a possible explanation, change to a Naturepath. I spent years being miserable because the lack of knowledge of traditional docs. My naturepath knew my problem after the few minutes it took me to explain my symptoms. The elimination diet proved her right.

(Note: Sally, I'm just getting the hang of this forum. I accidentally e-mail you when I meant to send this to the forum. Sorry for the duplicate)

pturse Apprentice

I seem to have breathing problems while sleeping. I never had them before going gluten free but now, my husband cannot sleep because I am gasping for air or am breathing out quite heavily in my sleep. Sometimes if I have just fallen asleep I even wake myself up but mostly because he is a light sleep he feels the ill effects. It is bad enough I have to get up 3 times a night to use the bathroom but to wake up because of breathing issues makes getting a full nights sleep tough. I have been gluten free since May of 03.

mommida Enthusiast

I can't breathe today either! So nice I'm not alone.

This may be off the wall, but I react to Alpacha. I think it's some kind of Llama fur. The reason I'm telling you this, if there is a sweater with about 3% off the soft fluffy stuff in the same house with me that is enough for me to not be able to breathe. (My sister ordered a sweater/ skirt set, and had it sent to my house. It was in a plastic bag in a box.) It takes about 3 weeks to get over. The reaction turns into bronchitis and then most times phenmonia.

I would look at any new items brought into the house and check labels on everything! Clothes, pillows, blankets, rugs, or maybe houseplants, anything.

Check the humidity level of the house too.

Laura

Lesliean Apprentice

Diane, My presenting symptom to the doctor was inability to get a deep breath. First he diagnosed asthma and inhaled steriods and albuterol helped some. Then diagnosed laryngopharneal reflux and pepacid helped some.

Only when I stopped gluten and dairy (they can go hand and hand) did my vocal chords and throat stop swelling. Still on asthma Rx but off pepacid and gluten and dairy now. My reflux and asthma was diagnosed by an asthma specialist. The pulmonologist was not helpful because they didn't do spirometry (check for asthma) or laryngoscope (to see the vocal chord area). He was able to handle the food intolerance issues too.

Good luck,

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to GlorietaKaro's topic in Super Sensitive People
      2

      Am I nuts?

    2. - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

    3. - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

    4. - Scott Adams replied to GlorietaKaro's topic in Super Sensitive People
      2

      Am I nuts?

    5. - Scott Adams replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      My journey is it gluten or fiber?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,805
    • Most Online (within 30 mins)
      7,748

    lalan45
    Newest Member
    lalan45
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • Russ H
      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      Your experience is absolutely valid, and you are not "nuts" or a "complete weirdo." What you are describing aligns with severe neurological manifestations of gluten sensitivity, which is a recognized, though less common, presentation. Conditions like gluten ataxia and peripheral neuropathy are documented in medical literature, where gluten triggers an autoimmune response that attacks the nervous system, leading to symptoms precisely like yours—loss of coordination, muscle weakness, fasciculations, and even numbness. The reaction you had from inhaling flour is a powerful testament to your extreme sensitivity. While celiac disease is commonly tested, non-celiac gluten sensitivity with neurological involvement is harder to diagnose, especially since many standard tests require ongoing gluten consumption, which you rightly fear could be dangerous. Seeking out a neurologist or gastroenterologist familiar with gluten-related disorders, or consulting a specialist at a major celiac research center, could provide more validation and possibly explore diagnostic options like specific antibody tests (e.g., anti-gliadin or transglutaminase 6 antibodies) that don't always require a gluten challenge. You are not alone; many individuals with severe reactivity navigate a world of invisible illness where their strict avoidance is a medical necessity, not a choice. Trust your body's signals—it has given you the most important diagnosis already.
    • Scott Adams
      Some members here take GliadinX (a sponsor here) if they eat out in restaurants or outside their homes. It has been shown in numerous studies to break down small amounts of gluten in the stomach, before it reaches your intestines. This would be for small amounts of cross-contamination, and it would not allow any celiac to eat gluten again.
×
×
  • 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.