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

Anyone Suffered Or Suffer From Asthma/shortness Of Breathe?


Renegade

Recommended Posts

answerseeker Enthusiast

There are a minority of people that have celiac disease whom do not get better on gluten free alone and need help from steroids. So take care. In the meantime, do you use a food journal, in case there is anything you may have missed?

I think the fact that I've been on oral steroids 3 times in a year is probably why I was able to cope. I wonder how sick I would have been if it werent for that little extra help!


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



Celiac.com Sponsor (A8-M):



  • Replies 69
  • Created
  • Last Reply
ravenwoodglass Mentor

No, I don't need to, I always eat the same things and I remember everything I eat.

If you always eat the same things there may be something you are eating daily that your body doesn't like. Try dropping one thing at a time out of your diet for a couple weeks and then adding it back and watching for a reaction. This is where a food and symptom journal can be helpful. With intolerances the reactions can be delayed for up to a week so keeping a written record can help pinpoint items that may be an issue.

According to my allergist we are most likely to be intolerant of things we eat every day. That was why when he prescribed my elimination diet starting point it was with 5 foods I almost never ate.

flowerqueen Community Regular

No, I don't need to, I always eat the same things and I remember everything I eat.

The fact you say you always eat the same things, reinforces my thinking that it could be a vitamin or mineral deficiency. If you don't vary your diet, you could be missing out on vital nutrients.

Renegade Contributor

I eat fruits or veggies with any meal, and I take multivitamins supplements, I reintroduced cereal as I tolerate them very well and will eat gluten-free bread back if I tolerate it too.

 

I eat a variety of 3 different meat, 5 fruits and 4 veggies a day and I had no corn,starch or bread,oat,cereal, my only grain being rice.

anti-soprano Apprentice

Hi All,

I'm crashing the party only because the breathing thing is what gets me most.  Short version:  I was on acid reflux meds for 6 years and my GERD always seemed to escalate to the point where I needed stronger meds.  I also chewed tums like it was my job.  Last summer I was on 2 nexium a day (had to be specially approved by my insurance co.) and things were still escalating.  I'm a professional singer, so not being able to breathe well is a real problem.  I thought that the GERD was aggravating the asthma (I've always had allergy induced asthma).  I also had vocal issues and my vocal stamina sucked.  I went to a great ENT and he sent me to a great GI doc.  Long story short- after swallowing test, 24 hr PH probe down the nose, additional endo with bravo and 48 hr PH probe off all meds: I NEVER HAD GERD.  When she went down for the bravo she biopsied my small intestine (something she says she does routinely) and since then I've been gluten-free.  Since GERD is a major issue for singers, I asked my excellent GI doc what to do if students had symptoms.  She said before going on meds, you should get a definitive dx by doing the bravo test.  I don't know how many of you who wrote in were actually diagnosed with acid reflux or were "kinda diagnosed" as I was. I have had 2 barium tests where they saw a little bit of something after turning me all around because my insurance co. required that for the med I "needed".

 

It wasn't until the first time I was glutened after starting the diet that I found out what my symptoms are: shortness of breath, severe anxiety, a weird and weak feeling in my thigh muscles (no idea on that one), extreme congestion, dry skin days after or other skin issues, fatigue, fog, and the usually GI issues (C in my case, bloating , and severe pain underneath my ribs and on my sternum that I always thought was the GERD).  I was on meds for the GERD, allergy meds for the congestion and a daily steroid inhaler for the breathing, all of which I didn't need if I just ate gluten-free and probably weren't doing much good anyways.  BTW the congestion is what was causing me to have more phlegm from the post nasal drip, which was wreaking havoc on my singing.  Usually singers will notice small changes in the voice/larynx that non-singers would not.  When I am short of breath no inhaler will help.  I just have to wait it out. I would LOVE for some doc to do a study on those of us that have this issue.  I've had the lung functioning tests and twice pulmonologists have told me there's nothing wrong with me.  I never wheeze as I did when I was younger and had an actual asthma attack.  The rescue inhaler helps my overall lung function just a bit when I'm a-symptomatic.  The once a day inhaler I was taking before DX had no effect (shocked my doc!)

 

Oddly, Years ago- at the start of the chest pain and "acid" issues, I had a spontaneous partially collapsed lung.  After I healed and the X-Rays said I was fine, I was always out of breath, couldn't walk long distances, took the elevator for 1 floor out of necessity (yikes), and had those pains in my sides.  I even persisted until a thoracic surgeon saw me.  Everything was fine.  I'm not sure if the two are connected, but they may be.  The pains in my sides/chest are the same celiac pains I know today.   Very slowly over the course of six months, I returned to normal.  I still don't know why I had the problem and why it went away.

 

Honestly, Renegade, I wonder if there's something that you're missing that isn't glutening you on a regular basis?  The sinus issues, breathing issues, and fatigue are all symptoms (at least they can be and might be for you too).  Also, I know you're a young male- are you tall and lanky?  When my lung went down, they were so surprised because I didn't fit the normal physical profile for that (young, male, tall and lanky build).  Just another thing to consider.  I tried to be very descriptive so you could tell if we were on the same page or not as far as symptoms go.

 

I hope you get some answers.  This is all very frustrating and I'm still struggling at times even at my one year mark.  But there are days that are spectacular and I wonder how I ever felt bad.  Those are the absolute best!

Renegade Contributor

Hi All,

I'm crashing the party only because the breathing thing is what gets me most.  Short version:  I was on acid reflux meds for 6 years and my GERD always seemed to escalate to the point where I needed stronger meds.  I also chewed tums like it was my job.  Last summer I was on 2 nexium a day (had to be specially approved by my insurance co.) and things were still escalating.  I'm a professional singer, so not being able to breathe well is a real problem.  I thought that the GERD was aggravating the asthma (I've always had allergy induced asthma).  I also had vocal issues and my vocal stamina sucked.  I went to a great ENT and he sent me to a great GI doc.  Long story short- after swallowing test, 24 hr PH probe down the nose, additional endo with bravo and 48 hr PH probe off all meds: I NEVER HAD GERD.  When she went down for the bravo she biopsied my small intestine (something she says she does routinely) and since then I've been gluten-free.  Since GERD is a major issue for singers, I asked my excellent GI doc what to do if students had symptoms.  She said before going on meds, you should get a definitive dx by doing the bravo test.  I don't know how many of you who wrote in were actually diagnosed with acid reflux or were "kinda diagnosed" as I was. I have had 2 barium tests where they saw a little bit of something after turning me all around because my insurance co. required that for the med I "needed".

 

It wasn't until the first time I was glutened after starting the diet that I found out what my symptoms are: shortness of breath, severe anxiety, a weird and weak feeling in my thigh muscles (no idea on that one), extreme congestion, dry skin days after or other skin issues, fatigue, fog, and the usually GI issues (C in my case, bloating , and severe pain underneath my ribs and on my sternum that I always thought was the GERD).  I was on meds for the GERD, allergy meds for the congestion and a daily steroid inhaler for the breathing, all of which I didn't need if I just ate gluten-free and probably weren't doing much good anyways.  BTW the congestion is what was causing me to have more phlegm from the post nasal drip, which was wreaking havoc on my singing.  Usually singers will notice small changes in the voice/larynx that non-singers would not.  When I am short of breath no inhaler will help.  I just have to wait it out. I would LOVE for some doc to do a study on those of us that have this issue.  I've had the lung functioning tests and twice pulmonologists have told me there's nothing wrong with me.  I never wheeze as I did when I was younger and had an actual asthma attack.  The rescue inhaler helps my overall lung function just a bit when I'm a-symptomatic.  The once a day inhaler I was taking before DX had no effect (shocked my doc!)

 

Oddly, Years ago- at the start of the chest pain and "acid" issues, I had a spontaneous partially collapsed lung.  After I healed and the X-Rays said I was fine, I was always out of breath, couldn't walk long distances, took the elevator for 1 floor out of necessity (yikes), and had those pains in my sides.  I even persisted until a thoracic surgeon saw me.  Everything was fine.  I'm not sure if the two are connected, but they may be.  The pains in my sides/chest are the same celiac pains I know today.   Very slowly over the course of six months, I returned to normal.  I still don't know why I had the problem and why it went away.

 

Honestly, Renegade, I wonder if there's something that you're missing that isn't glutening you on a regular basis?  The sinus issues, breathing issues, and fatigue are all symptoms (at least they can be and might be for you too).  Also, I know you're a young male- are you tall and lanky?  When my lung went down, they were so surprised because I didn't fit the normal physical profile for that (young, male, tall and lanky build).  Just another thing to consider.  I tried to be very descriptive so you could tell if we were on the same page or not as far as symptoms go.

 

I hope you get some answers.  This is all very frustrating and I'm still struggling at times even at my one year mark.  But there are days that are spectacular and I wonder how I ever felt bad.  Those are the absolute best!O

The only thing I see that could be glutening me on a regular basis is the fork I use from, work, it goes throw a dishwasher but people use those fork all the time with gluten food. Looks clean so I take it, but I'll be bringing my own fork from now on.

anti-soprano Apprentice

I don't think it could be the fork as long as it's washed...  Do you take pills of any kind?  Do you share food prep space with family or room mates?  Do you ever taste soap, shampoo, or hand sanitizer?  Chap stick?  Do you lick stamps or envelops at work?  Anything that goes in your mouth is a potential hazard- it doesn't have to be food. 


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



Celiac.com Sponsor (A8-M):



Renegade Contributor

I don't think it could be the fork as long as it's washed...  Do you take pills of any kind?  Do you share food prep space with family or room mates?  Do you ever taste soap, shampoo, or hand sanitizer?  Chap stick?  Do you lick stamps or envelops at work?  Anything that goes in your mouth is a potential hazard- it doesn't have to be food. 

I share an appartment and dishes wish someone that eat oatmeal that can be cross contaminated and other spices buts its about it. She's gluten-free but no celiac. All my food is prepared by myself.

IrishHeart Veteran

You do not have to worry about stamps or envelopes anymore. This is a myth. 

 

Open Original Shared Link

 

Plain spices are G F but some "seasoning/mixes" have to be scrutinized.

anti-soprano Apprentice

Ooooooo- thanks IH!!!  It was just weeks ago when I found out I really could eat blue cheese, now I can also lick envelops till my heart's content!  (This may sound sarcastic, but I am being completely sincere).  You continue to be a fount o' knowledge for me!

IrishHeart Veteran

Ooooooo- thanks IH!!!  It was just weeks ago when I found out I really could eat blue cheese, now I can also lick envelops till my heart's content!  (This may sound sarcastic, but I am being completely sincere).  You continue to be a fount o' knowledge for me!

 

Not sure if you ever watched "Seinfeld", but all I can think of is when Susan (George's fiance) died after licking all those wedding invitation envelopes. :D

 

When I first went gluten-free, I read all kinds of things about envelopes, blue cheese, vitamin E, etc and it made my head spin.

I would actually  wet the envelope flap with water to seal it.

 

Then, I read something either Gemini or Peter posted --about the envelope thing being a myth--and I started researching what else could be misinformation. Turns out, there's plenty of it circulating. :unsure: 

 

I find that Tricia Thompson's articles really help dispel some myths and inaccuracies about "hidden gluten".

 

If we believed everything about "big bad gluten" that we read on the internet,, we'd never leave our homes or eat a thing. 

bartfull Rising Star

Envelope adhesive MAY however, contain corn. So any of you who have a corn intolerance or allergy should continue to use water instead of licking them.

Adalaide Mentor

Also, they may taste bad, so finding a sucker or a sponge is never a bad idea.

anti-soprano Apprentice

Not sure if you ever watched "Seinfeld", but all I can think of is when Susan (George's fiance) died after licking all those wedding invitation envelopes. :D

 

When I first went gluten-free, I read all kinds of things about envelopes, blue cheese, vitamin E, etc and it made my head spin.

I would actually  wet the envelope flap with water to seal it.

 

Then, I read something either Gemini or Peter posted --about the envelope thing being a myth--and I started researching what else could be misinformation. Turns out, there's plenty of it circulating. :unsure: 

 

I find that Tricia Thompson's articles really help dispel some myths and inaccuracies about "hidden gluten".

 

If we believed everything about "big bad gluten" that we read on the internet,, we'd never leave our homes or eat a thing. 

I'm a huge Seinfeld fan and was probably thinking of Susan licking envelops when I wrote that as well!  Thanks for introducing me to Tricia Thompson.  I will definitely check her out.  When so many little unrelated things turn out to be gluten related, I find it really difficult to separate celiac stuff from other medial stuff (or just plain over-thinking).  Still trying to figure that out for myself.  At any rate, I think my husband will be glad not to lick all of my envelops in the future!

Renegade Contributor

Yep, this is definitely not gluten related, last few days have been so bad, I've been reaching for my breathe so much that if I swallow my throat hurt. It coming t the point that i am worried of brain damage at this point from lack of oxygen, hope I can last like that before I see the doctor. I'll update when he tell me what he found.

kareng Grand Master

Yep, this is definitely not gluten related, last few days have been so bad, I've been reaching for my breathe so much that if I swallow my throat hurt. It coming t the point that i am worried of brain damage at this point from lack of oxygen, hope I can last like that before I see the doctor. I'll update when he tell me what he found.

If its that bad, call an ambulance! Go to the hospital!

kareng Grand Master

Envelope adhesive MAY however, contain corn. So any of you who have a corn intolerance or allergy should continue to use water instead of licking them.

But, for this discussion, its gluten free. Not to confuse people - corn is considered gluten free.

  • 2 weeks later...
anti-soprano Apprentice

Yep, this is definitely not gluten related, last few days have been so bad, I've been reaching for my breathe so much that if I swallow my throat hurt. It coming t the point that i am worried of brain damage at this point from lack of oxygen, hope I can last like that before I see the doctor. I'll update when he tell me what he found.

Wondering how you are doing, Renegade.  Have you been to the doc?  Gotten any answers?  Still having a hard time?

jennjenn Newbie

I actually was misdiagnosed as having asthma 3 years ago. I was prescribed Albuterol and actually used it for 2 years because there were times when I was short of breath.  I also had chronic sinus infections and a severe bout of vertigo. I went on a raw food vegetarian diet for 6 months and felt great. I fell off the wagon and started consuming  gluten products again and wham! All these symptoms crashed in on me, panic attacks, raceing heart, brain fog, falling into a weird deep sleep and when I woke I had feelings of doom. Olf course stress was the diagnosis and I was put on an antidepressant. It was kind of funny cuz for a while friday nights were a night mare for me , my husband and I usually went out for dinner and I would have a weird episode after. Fast forward a year later and after all that time of eating cereal for breakfast bread for lunch etc I had a complete blood panel done to check thyroid function and viola, the Dr, called me to personally inform me that I have Celiac.  So yes, I do think you can suffer from shortness of breath. Inflammation is inflammation and I think it can wreak havoc in in your throat, broncheal tubes. I also have trouble with my throat sometimes i feel like food is getting tight.  I think everyone can have different symptoms.

Renegade Contributor

Wondering how you are doing, Renegade.  Have you been to the doc?  Gotten any answers?  Still having a hard time?

I went tot he doctor, it's of course as bad as before, ups and down as always, see the last thread I made.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,979
    • Most Online (within 30 mins)
      7,748

    volivier
    Newest Member
    volivier
    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

    • trents
      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
    • Wheatwacked
      @Riley., Welcome to the forum.   It was once believed that Celiac Disease was only a childhood disease and it can be outgrown.  That was before 1951, before gluten was discovered to be cause of Celiac Disease, also called Infantilism.  Back then Cileac Disease was thought to be only a gastro intestinal disease, once you  "outgrew" the colicky phase, you were cured. You were so lucky to be diagnosed at 5 years old so your developing years were normal.  Gluten can affect multiple systems.  The nervous system, your intellegence. The muscules, skeleton. It can cause neurological issues like brain fog, anxiety, and peripheral neuropathy.  It can cause joint pain, muscle weakness, and skin rashes. Epilepsy is 1.8 times more prevalent in patients with celiac disease, compared to the general population. Because through malabsorption and food avoidances, it causes vitamin D and numerouus other essential nutrient deficiencies, it allows allergies, infections, poor growth, stuffy sinuses and eustacian tubes. There is even a catagory of celiac disease called "Silent Celiac".  Any symptoms are explained away as this, that or the other thing. Gluten is one of the most addictive substances we consume.  Activating the Opiod receptors in our cells, it can numb us to the damage that it, and other foods are causing.  It has become socially acceptable to eat foods that make us feel sick.  "There's a pill for that".   It is generally accepted that n fact you are weird if you don't. The hardest part is that if you don't eat gluten you will feel great and think why not.  But slowly it will effect you, you'll be diagnosed with real diseases that you don't have. You'll be more susseptable to other autoimmune diseases.  As you read through the posts here, notice how many are finally dianosed, after years of suffering at older ages.  Is it worth it? I think not. Perhaps this book will help:  Here is a list of possible symptoms:   
    • Riley.
      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
×
×
  • 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.