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

[GottaSki]

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.

[Takala]

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. 

[GFinDC]

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! 

[Psyche]

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.

[SeekingSarah]

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.

[SeekingSarah]

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.

[SeekingSarah]

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?

[caseycc]

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

[SeekingSarah]

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

[caseycc]

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.