• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Post-Op Rny Gastric Bypass Putting Celiac Disease Puzzle Pieces Together
0

35 posts in this topic

The weirdest thing about the breathing was one day I was just standing on my front porch to talk on the phone (horrible cell reception indoors...even for big city Miami area), so I was standing on shaded front porch for like 5 mins maybe, walk back inside and couldn't get a deep breathe....I was like ok what is this? No exertion really? No chlorine? (thought chems from pool might have cause the after water aerobics issue).

 

Was it a high humidity day?  What temp?  I have had that happen inside my house during the highest heat of the day.  We get afternoon sun that raises the temp in our house by about 10 degrees and it kills me in the late summer/fall months.

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Re: feeling like you can't get a deep breath - that's the southeast heat/humidity, combined with whatever is ailing you.  People who have not tried to athletically train hard in that environment haven't a clue how difficult it is, how careful one has to be, and they don't understand how those of us out here in the semi- arid west, where the normal high temperature for 4 months is 95 to 100ºF, can prefer and withstand our heat (if we have a light breeze going).  It really is the humidity.  If you cannot breathe, usually it is really that you cannot EXHALE deeply enough to clear out the old, stale air, which is getting trapped deep in the little pockets in the lungs, so no new, oxygenated air can come in and the oxygen can be taken up by the bloodstream.  Also, any time you are outdoors you are exposed to who knows what sort of airborne pollutants, chemicals, combustion exhaust, ozone, etc, you cannot see this but it is effecting your ability to breathe.  Last evening here, it was crystal clear at dusk because we had a ferocious wind all afternoon, and I could clearly see the mountain ranges to the west and north, now this morning, 14 hours later, the usual CA smog combined with the stuff coming from across the ocean is slowly starting to make it hazy, again.  By summer, we will be fighting pollution every day, and that is WITH the higher air quality standards some like to complain about and try to get rid of. 

 

Try doing deep breathing while EXHALING if you feel like you can't breathe. Really concentrate on pushing the air out, in a steady pattern.  Most of the time, it works. 

 

Asthma frequently associated with wheat consumption....  another thing the wheat lobby really wishes we "gluten- sensitives" wouldn't talk about. 

0

Share this post


Link to post
Share on other sites

Hi Sarah,

I've had some problems with heat also.  And other things for that matter.  For me my worst symptoms were resolved by eliminating various foods from my diet.  I went gluten-free when I found out about my celiac disease.  But over the years since then I found out I have reactions to otoer foods besides wheat, rye, barley and oats.    I found out nightshades were making my joints hurt.  I found out soy was causing me to pass out.  I found out grapes were keeping my GI system in a constant state of irritation and making my feet and ankles swell up.  Dairy makes me congested and constipated and irritates my gut.  Somewhere along the line my sensitivity to heat went away and I am not sure if it was one particular food or a combination that was causing it.   I cut out coffee also.  We have several long threads about night sweats on the forum.  One theory was that they are related to a low level fever from inflammation in the body.  Sounds reasonable to me.  Celiac causes damage to the intestines and that causes inflamation and irritation.  Perfect recipe for a slightly high temperature in the body and possibly sensitivity to heat IMHO.

One idea is that we tend to develop food intolerances to food we eat a lot.  Celiacs may have a problem with a chemical called zonulin that regulates the passage of nutrients into the blood stream from the gut.  Dr. A. Fassano discovered this in some research he did.  It may be that this leads to food intolerances developing.  You may see this talked about as "leaky gut".  People talk about healing leaky gut also.  And to some extent I think that's right as the process may be more severe in a damaged gut?  I don't really know but it sounds possible.  The thinking is that small protein fragments can get through the gut lining into the blood stream, and cause food reactions.

Anyway, that's a rather long way of saying that I think it's possible your heat sensitivity is caused by a food reaction.  Next time you'll know to ask for the short version!  :)

0

Share this post


Link to post
Share on other sites

I'm very active in the WLS community and have not found many post-ops with Celiac, having much more success here than in the other communities, actually sent a message to a very popular WLS doctor asking if any of his patients have been dx'd post op or if he knew of any literature on the topic and he said "none". But that doesn't surprise me, typically only patients who aren't having issues follow-up or patients have very critical issues. So surgeons only see "successful" patients...ones who struggle feel embarrassed and don't want to go back they think they've failed, even if their might be a mechanical or medical issue at the source. 

A lot of post-ops vanish from the online communities once they have lost the majority of the weight. I know one other who had the DS in 2009 (we had the same surgeon) and she was diagnosed post-op though very likely had it before as she had a child with Celiac.

 

 

I found an article questioning if screening for Celiac should be a part of the pre-op tests for WLS. I would have to say um YES, since it's only a blood test initially and maybe an endo and often an endo might be done pre-op anyway! I am very involved in the WLS community and will be VERY vocal about this, another reason I want my tests etc so I can show documentation!

 

I agree with you. One big problem is that some of the diets often required pre-op will cause false negatives. Low-carb is a bugger for that. So will the protein shake diets.

0

Share this post


Link to post
Share on other sites

Re: feeling like you can't get a deep breath - that's the southeast heat/humidity, combined with whatever is ailing you.  People who have not tried to athletically train hard in that environment haven't a clue how difficult it is, how careful one has to be, and they don't understand how those of us out here in the semi- arid west, where the normal high temperature for 4 months is 95 to 100ºF, can prefer and withstand our heat (if we have a light breeze going).  It really is the humidity.  If you cannot breathe, usually it is really that you cannot EXHALE deeply enough to clear out the old, stale air, which is getting trapped deep in the little pockets in the lungs, so no new, oxygenated air can come in and the oxygen can be taken up by the bloodstream.  Also, any time you are outdoors you are exposed to who knows what sort of airborne pollutants, chemicals, combustion exhaust, ozone, etc, you cannot see this but it is effecting your ability to breathe.  Last evening here, it was crystal clear at dusk because we had a ferocious wind all afternoon, and I could clearly see the mountain ranges to the west and north, now this morning, 14 hours later, the usual CA smog combined with the stuff coming from across the ocean is slowly starting to make it hazy, again.  By summer, we will be fighting pollution every day, and that is WITH the higher air quality standards some like to complain about and try to get rid of. 

 

Try doing deep breathing while EXHALING if you feel like you can't breathe. Really concentrate on pushing the air out, in a steady pattern.  Most of the time, it works. 

 

Asthma frequently associated with wheat consumption....  another thing the wheat lobby really wishes we "gluten- sensitives" wouldn't talk about. 

It would be completely gone after the summer months, last year I moved back to S. Ohio...can still get hot and humid here...can actually get hotter nastier some days without that nice Miami ocean breaze...but last summer no issue or no lingering for day issue that I recall. Of course as soon as I mentioned to the NP that it was the only un dx'd condition and that I might need to catch it over the summer for more eval she offered me drugs...now PCP in Miami had given me an inhaler (which never really relieved anything) but PCP had never recommended daily meds, again it was never to the point of I can't breathe just hmmm can't get a good breathe. So I'll watch for it this summer, but yeah been over a year since I really dealt with it...thanks for the suggestions.

0

Share this post


Link to post
Share on other sites
Ads by Google:


When these breathing issue began a couple years ago I brought up to my PCP that in 2nd grade I was dx'd with Asthma but I was never given meds or inhaler as I really never had an asthma attack, I'd get short of breath after exertion but then again I weighed 125lbs in 2nd grade so of course the "fat kid" get short of breath after running or climbing stairs...but I could always rest to "catch my breath"....this issue that started two years ago was just totally different, and again often while I was exercising like at the pool I was fine, then 2 hours later...bam...but you know ate dinner after that....could have been something trigger...who knows. But yes just another oh yeah there is a sign I've had symptoms ALL MY LIFE.

0

Share this post


Link to post
Share on other sites

Just wondering...when/if they do a Endoscope given I've had part of intestine bypassed will they be able to get accurate biopsy or will the part they have needed to really biopsy have been bypassed?

0

Share this post


Link to post
Share on other sites

Sarah, please let me know how you make out.  I had RNY about 10 years ago and gained most weight back.  I had viral meningitis a year ago and thought I have been struggling with it since.  My health has been getting worse over last five months though, not better.  However I have been extremely exhausted (beyond exhausted), dizzy, breathing problems (much like you described), migraines, thought I had heart problems (despite regular blood pressure, normal cholesterol, eating no fried food and little processed food, but alas I am overweight) but got the cardiologist clearance after invasive procedure, they sent me to a sleep dr and I'm getting tested for apnea, now getting sent for breathing tests and then for cardio/breathing combo if that clears (I honestly don't know how I'm going to do that test).  I'm going for upper GI because silent reflux can mimic heart problems but the gastro physician asst. is strongly suspecting celiac disease.  I too have been battling low vit B-12 (shot every 3 weeks) and Vit D (50,000 i.u. prescription 2x a week, supposed to be 1x week for a month then over the counter but I've been on it for months), all suspected on the RNY.  I'm just started scalp botox for migraines and on so much topamax medication I've nicknamed myself "dopamax".  My quality of life sucks.  I barely make it to work and home and its in bed.  I'm so exhausted my husband makes dinner.  I might help.  I rest all the time.  Sometimes I'm too tired to take a bath, a favorite relaxing thing I used to like to do!  I swear if I had a handicap sticker on my car, it wouldn't help me!  I'm tired, but not always a sleepy tired, an exhausted tired.  I'm also having a colonoscopy when I have the upper GI so hopefully they can further test for the celiac.  I had the blood test two days ago.  I'm kind of relieved because I've been thinking chronic fatigue, MS or Lupus (I had positive ANA test a few years ago, which topamax meds can sometimes cause a false positive).  All these doctors and specialists (Neurologist, Cardiologist, Pulmonologist, etc.) seemed to just shrug and say its the weight and just move around more, you have been too sedentary since the viral meningitis, MOVE!  But this one Physician's Assistant says, we need to look at celiac; overweight, extreme exhaustion, heart palpitations, breathing issues, etc. are some of the many, many symptoms.  I can't wait to hear about your progress.

 

Casey

0

Share this post


Link to post
Share on other sites

Casey I sent you a friends request so I can connect with you once I know more....

0

Share this post


Link to post
Share on other sites

Thanks Sarah, I'll keep you posted too.  I've just been on the gluten free diet since last Thursday and while my stomach/digestive symptoms are a lot better I'm waiting for all other health symptoms to improve.  Constipation is a lot worse, but I heard that can happen.  But funny thing is I can eat things like potato salad which I swore used to bother my stomach but it must have been the bread that I had with the sandwich or hamburger along with the potato salad.  All along I thought the gastric bypass handle the potato salad!  I'm discovering new things every day!  Maybe I can even eat fruit now, who knows!  I just want my energy and breathing back, even just 1/2 of it, and the aches and pains gone too.  I don't get on here much so you could get me at caseycc at cox dot net.  I spelled it out in case its not permitted.  I've decided to slowly taper off my topamax (also known as "dopamax") for migraines because I'm walking around in a permanent fog and loosing my hair like crazy and I really think it's causing some of the breathing problems.  I wish you luck, it seems like these drs and specialists and tests take forever!  I wish there was a full body scan to detect everything wrong.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,786
    • Total Posts
      932,420
  • Member Statistics

    • Total Members
      64,267
    • Most Online
      3,093

    Newest Member
    Michelle Robinson
    Joined
  • Popular Now

  • Topics

  • Posts

    • I can tell you that the head pressure you are speaking about is one of the symptoms I am experiencing now.  And fogginess and dizziness.  I'm going to go as long as I can with my challenge. Im hoping the new GI I'm going to see will work with me. I would like him to do blood work every month to see if levels are changing.  There were so many problems with my daughter's challenge and testing. U of C at the time only recommended a 6 week challenge. And only tTG IgA and total IgA were run. Not a full panel. Well after the biopsy and when insurance wouldn't give us another referral we were told that there was a more extensive panel. By then she was gluten free and we were not going back.  
    • People are able to find a very old topic and add to it (bumping it up to current).  We need to remember to check the dates and realize that these people from 10 years ago may not respond.  Also, remember that product info, ma be even medical info, can change in that amount of time.
    • When I was changing doctors due to insurance issues, I got one doc who I told I had celiac, and had been gluten-free for 2 years. He ordered a blood test and said I DID NOT have celiac cause the blood test came back negative....I looked at him like it was crazy, told him course your not going to detect the antibodies in test if I am not eating it. Told him to go back to med school and never went back. Similar experience with another doctor around that time....funny memory glad I found one that knows about the disease to some extent.
    • ÖThe potential celiac or  NCGS  diagnosis is given to me by the Celiac researchEr.  I do not think it's official until after we meet again.  actually I have not heard of that doctors work. I will look it up and see if I can listen to an interview. Thanks for sharing.  some of the symptoms that I continue to have Had on a strict gluten-free diet or similar to what I have now  and some of them disappeared. Of course During that time I was thrown on Xanax and some Protonix even though I don't actually have acid reflux. So there may have been some symptoms that were caused by those medications but I've been off Of Them for months now.  I guess headed pressure would be one of the more prominent symptoms  that I still had on a gluten-free diet although it's much much worse recently well I'm gluten.  it was almost like I can feel a strange sensation in my gut and the head at the same time but it's nothing like what you would think it wasn't cramping it wasn't... I don't know how to describe it. it does not feel anything like sinuses it's a really strange feeling like my brain Is inflamed Or being squeezed.  When I first started getting it it scared the living crap out of me because I thought I was going to end up passing out. I would be afraid to drive alone with my young son. Now admittedly I was diagnosed with inflammation of the small intestine in late August and was gluten free throughout the fall but started eating it again in late December. So I may not have given myself a tremendous amount of time to heal from the August duodenitis.   Currently I have pain in the right rib cage area,  I also get a tremendous amount of pressure in that area mostly when I'm sitting. Kind of like when us pregnant women had a baby's foot stuck up in that area.  I get nausea on and off, some shortness of breath, dizzy,  when my brain gets that  pressure my eyes often feel it as well, and I get some transient numbness and tingling in my hands and oddly in my face.  last summer I had Random episodes of blood pressure drops as well. I would start to really not feel well and noticed that eating actually helped those episodes. I was exercising a lot At the time but ate constantly  and was maintaining my weight. One doctor theorized it might be my blood sugar dropping so I bought a monitor but I never caught that. The only thing that I did catch was when I bought the blood pressure monitor and started taking my blood pressure when these episodes were happening.   for the most part I had pretty good health up until about a year-and-a-half ago and a very strange six months or so about 13 years ago where a lot of neurological stuff happened as well. I had vertigo, visual disturbances, eye floaters, muscles twitching, ants crawling sensation on my scull, some really strange stuff. It lasted about 6 months and over time it just went away.  except for the eye floaters, they stuck around. I'm not particularly concerned about them it's just that they were not there one day and I had some visual disturbances and Bam there they were and they never went away. I have a half-sister with MS but we ruled it out for me at that time and we also ruled it out last summer as well.   I did the whole 12-week thing that they're suggesting for your daughter. We figured the six weeks wasn't long enough.  For the most part other than a few weird things I honestly didn't get strange symptoms until the end of the six weeks so 12 weeks made sense. I think I actually ended up doing 10 weeks before the biopsy This time. Nothing but the increase in IELs.  I know they only biopsy the duodenum and I wonder sometimes if it's not just lower down. But with the negative blood work except for that one random test I don't know if it's really worth pursuing any more testing at this point. I'm so tired.  I know my brother is seronegative but that's pretty rare although I have no idea whether or not they've ever done a study on if that happens to be familial.  I also would really like to know if people who test positive for TTG 6 have any gut damaged. Because if that's the case perhaps there is no seronegative celiac disease  Have you read Dr. Fasano's work?  he writes back both Celiac and ncgs.  How long are you doing your challenge for again?  I know you may be anxious for answers as well but my suggestion just from personal experience would be to go as long as you can. 
    • I should qualify that I'm actually consuming the equivalent of 1-3 slices of bread in the form of vital wheat gluten. Sometimes I have bread, if I'm eating out. But I don't really want all of the carbs and I want to demonstrate that it actually IS the gluten causing the problems and not a Fodmap issue.  My reaction to bread and my reaction to the gluten are the same.  I'm actually shocked at how quickly things have changed. My hair is starting to thin again (boo hoo 😩), and my stools are completely different and it's only been about two weeks. The headache and dizziness and nausea are the worst.  Ennis, you are right. You would think that all of these symptoms would show on blood work. Grrr. I'm hoping that the GI I'm seeing on June 7th will run a preliminary full celiac panel.  It will only be 4 weeks by then.  Will it show something?  My sister has her PhD in immunology and I remember her saying how difficult research in immunology is because you need clearly high antibodies to demonstrate anything. 
  • Upcoming Events