shortness of breath

[ironictruth]

Okay I know I have seen this post in the past but it's been a while. Does anyone remember getting a shortness of breath? I am 6 weeks gluten free except for a couple of mess ups and find it recently hard to take a deep breath. I can still breathe and I have mild asthma but nothing big, I can even still jog on the treadmill. However I find myself yawning and just thrilled when I finally get a deep breath in.  it feels so freaking good! My iron and ferritin levels are within normal range 2 weeks after stopping gluten. Someone mentionEd my ferritin at 49 may be less than optimal and did drop from 74 From a couple months prior.  I am not sure how quickly your iron can drop, because the shortness of breath started after the last test.  It has been a month since the last blood work. I am taking some Iron But afraid to take too much since if you do not need it you can overdose.

 I do look a bit pregnant these days although I am not thank God and I'm wondering if it's just my diaphragm being squished.

 I tried Pepcid for about a week and a half to see if maybe it was silent reflux and that did not help. Also tried Claritin for about 10 days and that did not help. Also tried Xanax a couple times, and that seems Calm me about the fact that I cannot catch my breath, but also did not help.

Anyone?  it is so frustrating.

[Estes]

I have had that off and on.  I find if I bath my dog or use candles during a time when I am a bit weak, it happens.  Do you have new carpet, change of seasons, pets? New perfume?

[ironictruth]

We have had had a change in seasons. 

I am really thinking it may be a squished diaphragm from bloating. Because when I stretch out and lay on my back it does not happen. 

[AWC-California]

I had shortness of breath for about 6 months about after going gluten free (started around month 3).  I do have some other contributing factors that are heart related but I don't think they were the main cause.  Mine seemed to get really bad after eating eggs (severe reflux).  I am also suspicious about soy.  Some of the gluten-free waffles I was eating contained soy and I noticed shortness of breath after eating those.  I went on a really strict GERD diet for several months and it really helped.  I have been gluten-free for 1.5 years now and have not recently had shortness of breath that I believe is related to gluten.  I am back to eating eggs and other foods that were previously a problem for me.  Best wishes.

[ironictruth]

Thank you. Yes, my squished diaphragm theory is looking less likely. I will start examining other foods as a possible culprit. 

[cyclinglady]

Did your doctor advise you to take iron?  It can be dangerous to self-diagnose anything.  Think about it!

 Stop worrying about your symptoms and focus on recovering from celiac disease.  You will be surprised how much better you can feel.  All your energy should be making sure you are not consuming gluten and avoiding cross contamination.   

When your ferritin levels affect your hemoglobin level, that's when you should worry, in my humble opinion.   I have never even seen a 74 on my ferritin results in my life!  I was breathless when it reached a 2 and my hemoglobin was a seven.  

Six weeks into the diet is gluten-free frankly, nothing!  Give it time -- six months at least.  I understand that you have anxiety (that is a definite symptoms of celiac disease).  We are here to help and support you.  

Hugs!

 

 

[ironictruth]

Thank you. You have responded before and I found it helpful. No, my doctor did not advise me to take iron. My level went from 74 to 49 in a short time. They had not done a hemoglobin. In fact, the only reason they checked the ferritin was I requested it. I had read that there are optimal levels (60-100) and for some, if it drops below 50, symptoms can set in. So I figured I would supplement once the shortness of breath kicked in. To be clear, I did check with a physician's assistant friend of mine and the amount I am taking is not at all a concern. This may be TMI, but all of my stools now float which they had not done before and I know that can be a sign of poor absorption. I keep waiting fo rthem to go back to NOT floating. I did have D several times in the morning several times a week prior, and that is now gone.

This whole experience has not been good for me at all and I am NOT a confirmed celiac. So I think I worry more about the onset of symptoms and what is actually causing them because I do not have the diagnosis. My brother has celiac and he does think my issues are from gluten, it just is still somewhat unbelievable to me.  I went gluten-free a year ago after a mildly elevated DGP IGA at the suggestion of my primary care doc.  I had gone to her for my very bloated painful belly. I then realized the diet is a pain so opted to see a GI doc to          confirm. I was DQ2 positive. But my GI doc was not celiac saavy and it started to become clear to me that I was learning more scrolling through the boards then he knew. He was 1) totally shocked I was not "allergic" to wheat but had the DQ2 gene. I was totally shocked that he was shocked by that. 2)  He was unaware that the DGP tests replaced the older gliadin tests, I had to show him an article. He does not bother requesting anything other then TTG. 3) He forgot to order my bloodwork after I was eating gluten for 6 weeks despite my calling the office to request the order.

After a 6 week challenge, my biopsy was negative (he did take 6-8 samples of the bulb). I did tell him that the D in the mornings did not start for the most part until the end of week 4. I did have chest pain before then though. He told me to go gluten-free and it was ok to "cheat" every now and then. When he realized he forgot to order the blood work a month later, he asked if I wanted to go back on gluten again, so I  did. Eventually, my primary care just suggested I stop. My symptoms were getting ridiculous. Pain between my shoulder blades, chest pain, ear pain, pain in the side of my neck, dizziness, weird visual stuff, small burps, shortness of breath, a strange squeezing feeling in my upper stomach, general flu like feelings and horrible feelings like I am going to pass out. The feelings come and go in waves. I have learned fairly well to not panic when it all hits at once because it makes it worse, but admit, it is extremely disturbing to feel so ill when I am with my young son, especially out in public. I may be fine for several hours then have a "bout" for awhile, then it will vanish. When I feel ok, I take advantage. I jog on the treadmill, though that has suffered due to feeling breathless. I am not totally out of breath. Just cannot get a deep one in.  It does seem very coincidental that it all started with the re-introduction of gluten. I guess I assumed that as soon as I started eating it I would get sick right away instead of it taking a month. I also figured I would feel better by now if it was the gluten. I have some days that are better then others.

However, I have screwed up and eaten it twice just in the last week accidentally which was extremely upsetting to me because again, I have no way of knowing for certain if this is what is causing my issues.

But I do like your advice, to focus on cross-contamination. I was talking to my boyfriend the other night about all of this as the sudden onset of symptoms that were not there at all just 4 months ago is annoying and scary. I realize that there is no way I am going to be able to rule the gluten in or out since I do not own a dishwasher and am washing my son's PBJ knives with a dish sponge then washing my stuff with it.  I am also still going out to eat and ordering gluten-free items but not really thinking about CC. Again, it is hard to believe with a negative biopsy and the first month on gluten feeling ok that this is what it is. But, if I do not become extremely cautious about it, I will never know.

So, I am strategizing a way to get my current kitchen totally gluten-free for awhile. I am moving in a couple of months and will have a dishwasher and replace some items then as well. In the interim, I did buy a new pot/pan solely for me, and some new cooking utensils. I may "ban" gluten from my house since I am unable to safely wash other items. I also told my boyfriend we may need to avoid going out to eat for at least a month to see if there is any improvement.

It just seems like an awful lot to do an to put other people through (son and boyfriend) if it is something else.

On a side note, very dedicated gluten free bakery near his house with to die for cupcakes. So, that is a plus.

 

 

[TrisBerliner]

I was having a lot of chest pain and difficulty breathing before going gluten free, and chest pain is the first thing I noticed when I get glutened. I also have some mild IBS and take Bentyl, which has helped eliminate all chest pain and breathing pain unless I ate something I shouldn't have.