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Trouble Breathing & Celiac

sidelined

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sidelined Apprentice
sidelined
Posted

I'm a teenager who, for the past several months, has experienced a host of symptoms, among them constipation, unbeatable fatigue, an absence of appetite, and perhaps worst of all, labored breathing. My symptoms (particularly the digestive ones) led me to a GI doctor, who gave me a tentative diagnosis of Celiac (or gluten sensitivity--both are on the table until blood tests are done). I had been gluten free for about a month prior to seeing this doctor, and since then, my energy levels have skyrocketed and my digestion and appetite have improved (partially thanks to a Magnesium supp.), so I do believe that gluten has been doing me harm.

 

However, I'm having trouble understanding why my breathing is still giving me trouble. Some days, my breathing feels absolutely fine, while others, I just can't catch a breath. These breathing patterns seem completely arbitrary and random, and I can't find any connection between the days I can breathe fine and those when I can't. I've had a complete pulmonary evaluation and nothing is inherently wrong with my respiratory system, so I've been forced to conclude it is related to my digestive problems. Here are my questions:

 

1. Is trouble breathing (that feeling that you can't catch a breath) often associated with gluten disorders?

 

2. If so, why won't it go away? Could it be that I haven't been gluten free long enough (~1 month)? If that's the case, why does it feel fine some days?

 

3. Could I be getting glutened without my knowing it? My biggest concern is my family's shared convection oven. Could that be it?

 

I will add that I've been very precise with my diet, and I only really eat fruits, veggies and meat/chicken/turkey/fish.

 

Also, I am a runner and was running about 9 miles per day before the symptoms flared up, so I'm no stranger to breathing properly when I'm asymptomatic!

 

Thank you so so much for your help everyone. I just want to get back to "normal" (in all respects except diet, of course!).

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ravenwoodglass Mentor
ravenwoodglass
Posted

The inflammation that celiac causes can contribute to problems with just about any body system. In my case it did cause me to have asthma (don't think that is spelled right) that resolved after I had been gluten free for a while.  It can take some time for symptoms to resolve. 

I do hope you had the blood work done before you went gluten free. If not it is likely you will have a negative result even if you do have celiac. If you want or need a diagnosis and you haven't finished all testing you do need to go back on gluten for a few weeks before you get your testing done.

sidelined Apprentice
sidelined
Posted
  • Author

The inflammation that celiac causes can contribute to problems with just about any body system. In my case it did cause me to have asthma (don't think that is spelled right) that resolved after I had been gluten free for a while.  It can take some time for symptoms to resolve. 

I do hope you had the blood work done before you went gluten free. If not it is likely you will have a negative result even if you do have celiac. If you want or need a diagnosis and you haven't finished all testing you do need to go back on gluten for a few weeks before you get your testing done.

Thanks so much for replying! How long did it take in your case for the asthma to go away? Also, was the asthma an everyday thing or did it vary day-by-day?

HavaneseMom Explorer
HavaneseMom
Posted

Have you had your iron tested? Celiac can lead to anemia, which can cause shortness of breath and labored breathing.

My shortness of breath was pretty bad by diagnosis, but would vary day to day. Do you notice it more when you are physically active?

I don't mean running, but just little things like walking down the hall? Even walking up a flight of stairs would leave me very winded.

Hopefully your doctor can get to the bottom of these issues for you.

sidelined Apprentice
sidelined
Posted
  • Author

Have you had your iron tested? Celiac can lead to anemia, which can cause shortness of breath and labored breathing.

My shortness of breath was pretty bad by diagnosis, but would vary day to day. Do you notice it more when you are physically active?

I don't mean running, but just little things like walking down the hall? Even walking up a flight of stairs would leave me very winded.

Hopefully your doctor can get to the bottom of these issues for you.

I've been tested for anemia, asthma and the like. All negative =(. Yes, the problem is aggravated significantly when I'm up and moving. 

HavaneseMom Explorer
HavaneseMom
Posted

I've been tested for anemia, asthma and the like. All negative =(. Yes, the problem is aggravated significantly when I'm up and moving.

I'm glad to hear they ran all of those test. If the problem continues and your doctor can't figure out the what is causing it, you may want to take a closer look at your lab results. Some of the iron test have very large reference ranges that are considered "normal" results. For example, Ferritin at my lab has a reference range of 11-306. If your Ferritin were to come back at 12, it would be in the normal reference range, but you would be feeling much different than a person whose number came back higher say at 150, and you may have symptoms related to low iron, even though technically you are in the normal range. If you are concerned, your doctor or lab would be able to get you copies of your results to look over to see where your iron numbers fall within what is considered the normal ranges.
greenbeanie Enthusiast
greenbeanie
Posted

Have you been eating dried fruit, a lot of vinegar or fermented foods, or other foods high in sulfites? That can cause breathing problems for some people. My tongue swelled up for months after I did a gluten challenge last year, and as a teenager I had episodes when I was gasping for breath after dinner and doctors couldn't figure out why. Asthma tests were negative. It was very scary. In retrospect, we ate dried fruit for dessert a lot around that time of my life. I was only diagnosed with the sulfite problem recently, but in retrospect I feel sure that's what was going on then too. A lot of gluten-free snack bars are high in sulfites, and so are gluten-free flours that contain potato starch flour. My sulfite problem actually got worse for a while after I stopped gluten, because I'd always felt sick from wheat and rarely ate it before. Suddenly I was eating gluten-free backed goods that I loved, and I ate much more baked stuff as a result, which made the sulfite problem worse. I was also eating more salad, and salad dressings are high in sulfites. Anyhow, I hope sulfites aren't an issue for you, but it may be worth looking into if the breathing problems continue.

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powerofpositivethinking Community Regular
powerofpositivethinking
Posted

the Celiac Diva posted this question on her Facebook page the other day.  check out some of those comments!

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      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
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    • Colleen H
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      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
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