Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


Photo
- - - - -

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

gastric bypass lymphedema

  • Please log in to reply

34 replies to this topic

#16 GFinDC

 
GFinDC

    A little farting never hurt anybody... :-).

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,160 posts
 

Posted 22 March 2013 - 05:24 AM

That's great they can get you in sooner Sarah.  How about the blood antibodie tests? Will they do those also?

If they can test you for vitamin and mineral levels that would be good.  Celiac damage to the gut can make it hard for the body to absorb vitamins and minerals.  So that is another indicator of possible gut damage.  Plus you will know what is missing if anything.  Being low on vitamins and minerals can cause lots of various symptoms.


  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

Celiac.com Sponsor:

#17 SeekingSarah

 
SeekingSarah

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 88 posts
 

Posted 22 March 2013 - 05:49 AM

I'll take the list of blood tests with me and be sure they do all of them, again if not the PCP in FL will order any blood work I want as soon as she is back. I already know I am very low Vit D and B12 have been extra supplementing them since Jan. Actually Vit D since Oct just taking longer to increase. But of course those being lose are just contributed to being post gastric bypass also...just saying it's harder to get docs to listen to things as possible other conditions as they like to just default to gastric bypass...before gastric bypass everything was blamed on my weight, then after gastric bypass everything is blamed on the fact you chopped up your guts...now deal with it....that's life...too bad. I really don't understand it, I see smokers still smoking yet get medication, treatment, etc...they aren't told to just stop smoking (like I'm told just lose weight) or just deal with it....


  • 0

#18 GottaSki

 
GottaSki

    "The past is the past...I've got places to be."

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,100 posts
 

Posted 22 March 2013 - 06:13 AM

Completely understand -- when I was finally diagnosed at 43 -- we were at first skeptical as I had been mis-diagnosed or dismissed so many times.  I can now pinpoint every symptom I have had since childhood to celiac disease and they are slowly improving or have disappeared.

 

Do keep finishing those cookies...have a thin mint for me this evening for me -- oh if no one has mentioned -- sometimes it is easier to consume the gluten needed until your testing is complete in the evening -- not always but can help limit some symptoms to sleeping hours.  And no need to overdo it -- one or two slices of bread per day -- hmm maybe two or three GS cookies???

 

As for your question regarding my heat/exercise intolerance.  Since I was a young child I always turned bright red in the face and chest when i exercised -- like running -- I ran 6 miles a day as a teen - felt great but looked like I was about to have a heart attack.  As the years went on I started having issues with heat and humidity - not only did I get a uticaria type rash and turn bright red, my lungs began having serious trouble -- I live in San Diego - grew up on the beach every summer -- took my kids there regularly until about 10-12 years ago...couldn't even get comfortable going between the ocean and umbrella.  Doctors NEVER figured this problem out -- when it got really bad this past five years my allergist - one of the top in his field - had me try all the different antihistamines and allergy meds while I was out exercising -- I only got minimal help from one -- Benedryl -- only problem Benedryl knocks me out -- ZERO desire to exercise so that was not a solution.

 

This past Fall when I finally became vertical once again I was taking very short walks.  On Thanksgiving morning I got up to full speed for a mile and bloated up like a balloon once again -- that night I googled "abdominal bloat - exercise" -- I guess I had never searched with those particular words during my years of researching heat and exercise allergies, intolerance, breathing issues, rashes, bright red face, etc....anyway I found "Histamine Intolerance"  -- everything clicked -- I read as much as I could...asked my doctor to run tests of two enzyme levels -- these enzymes are produced in the mucosal lining of the small intestine -- HELLO - mine was destroyed and had not started healing at all until last July (three years gluten-free and over one year many other thing free.  I am talking with two celiac specialists as I have improved by leaps and bounds since I have removed histamine containing and histamine inducing foods -- I am even walking in full sun -- can't run or ride my bike in full sun yet -- but I am hopeful.

 

I'm on the wrong computer, but will add a link to the best simple explanation of HIT (histamine intolerance) -- by the way -- I was never able to get the proper tests for DAO - the most important enzyme -- at UCSD with assistance from Mayo - crazy but true -- still haven't got a response from my allergist as to why histamine intolerance was not diagnosed or even considered here -- my research indicates there are many countries where docs look for this -- the US is not one of them.  One other member on this forum's doctor did mention histamine being an issue for her some time ago --- she didn't have much luck by removing histamines when she was newly diagnosed, but has removed them again with me and having some success.


  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#19 SeekingSarah

 
SeekingSarah

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 88 posts
 

Posted 22 March 2013 - 06:50 AM

Thank you. 

 

I'm trying not to overdue anything, as I have regained so much weight, 30lbs since moving back to Ohio in May so definitely no cookie binges, but I have the ability to just enjoy a few, like really there is a local cupcake place that won Cupcake Wars, I've had a cupcake in my fridge for days, I laugh at myself that I reach past it to grab my apples...lol. I've had so many health issues, that appeared...PCP would try to figured out...but then they'd go away before we'd get a DX so it was just like well ok the test were negative and the symptoms went away or are not causing emergency situations so life goes on. I was an overweight/obese child with sore throat earaches, never much other issues but yes always had sores on my knees/legs....which I find interesting to think about now. Joke that I've have more medical issue since losing weight ie after WLS, but most such as TIA/PFO were genetic not related to my weight or surgery directly, which I guess is true. My brother has fibro, my mother, sister, and at least 1 aunt has thyroid issues. 


  • 0

#20 SeekingSarah

 
SeekingSarah

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 88 posts
 

Posted 22 March 2013 - 06:58 AM

There is a free Gluten Free cooking book on Kindle Amazon today, is that something we can share on these forums? 

 

No Link but people can look for 

What is Gluten Free Covering the A to Z of Gluten Free
  • 0

#21 GottaSki

 
GottaSki

    "The past is the past...I've got places to be."

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,100 posts
 

Posted 22 March 2013 - 08:54 AM

here's the best condensed info I've found on HIT:

 

http://www.allergyuk...Intolerance.pdf


  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#22 mommida

 
mommida

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,958 posts
 

Posted 22 March 2013 - 03:37 PM

Many hospitals were doing the WLS, no not so many.  In fact I'm not sure of any local hospitals doing them.  They were having so many patients back in the hospital.  A local hospital was going for "the top WLS center "title, to NONE.  So with the fear of pending lawsuits, there goes your true statistics of WLS induced celiac disease !

 

I was in close enough contact with medical professional working with some of those later hospitalized patients.  Asking about celiac disease, because "Holy Crap there's another LWS Celiac"  So add to that the question was it undiagnosed Celiac causing the weight gain in the first place? or was the surgery the trigger.


  • 0
Michigan

#23 SeekingSarah

 
SeekingSarah

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 88 posts
 

Posted 22 March 2013 - 05:19 PM

Many hospitals were doing the WLS, no not so many.  In fact I'm not sure of any local hospitals doing them.  They were having so many patients back in the hospital.  A local hospital was going for "the top WLS center "title, to NONE.  So with the fear of pending lawsuits, there goes your true statistics of WLS induced celiac disease !

 

I was in close enough contact with medical professional working with some of those later hospitalized patients.  Asking about celiac disease, because "Holy Crap there's another LWS Celiac"  So add to that the question was it undiagnosed Celiac causing the weight gain in the first place? or was the surgery the trigger.

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 know I'm looked at as just a non-compliant patient. Although with the lipedema I can explain why I'm not losing but most no nothing about it either. They just see someone who had WLS and is still over 300lbs I must be lying about what I eat.....but I tell you all my life I was 125 in first grade and I can track an average of 25lbs a year gain...and yes I take responsibility that I ate CRAP growing up...that lead me to over 500lbs. But I was down to 250lbs then I gained 50lb in a year and I was eating healthy, not CRAP like I was, and I would go to water aerobics, etc. It made NO sense. Even now I see my mom not eat as well as I do, drink sweet tea, etc, I gain weight and she stays at her weight...yeah she is also obese but still she weighs 100lbs less than I do!


  • 0

#24 Takala

 
Takala

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,555 posts
 

Posted 22 March 2013 - 07:33 PM

So add to that the question was it undiagnosed Celiac causing the weight gain in the first place? or was the surgery the trigger.

 

Sort of the classic was it the chicken, or the egg question.......  B)

 

I was just reading a bunch of stuff from our dear friends the Wheat Lobbyists, and they have this alternative nutrition narrative that is insisting that normal humans should eat whole grains, and lots of them, to lose weight, complete with studies showing that whole grain eaters are allegedly thinner ("not obese") than the rest of the general public, which is increasing in plumpness at an alarming rate (alarming to them, anyway, I am trying to be more zen about this)  and that consumers of whole grains, including the bran (outer part of the grain kernel) have alleged better gut health. Oh, how they love to recommend their bran.  What is interesting is that there is absolutely no mention of how all these graceful, mythical creatures (the normal, slender modern adults eating lots of grains who are still not obese, and presumably not "fad" dieting ) do not have any sort of auto immune or chronic diseases which would then be causing them to gain weight, or to take medications which have, as the side effect, weight gain.  They're saying people are healthy because they eat grains.  I'm saying they're eating grains because they are healthy. I want them to show me the time in human history where people ate as much grain as they claim is optimum, and had the average lifespan they claim we should have now.  And I want them to do this with my ancestors off of all my family tree branches, and they can't do this, because Wheat is a middle eastern/European food import, this is North America, and they won't admit it, so it's an interesting stalemate.  This thing with looking at corn as only a biofuel is seriously whacked. 

 

Chicken, or egg ?

 

We had, up until around the 1950's, and the introduction of antibiotics, (plus modern indoor plumbing for most)  an incredibly high infant mortality rate. It was normal for a woman to have many more children than lived to adulthood. This can be seen in any old, historic burial grounds from the 1700 or 1800's by reading the tombstones, plus checking census records. And there is no way to go back and visit each one of these little babies or children which succumbed for all these unknown reasons, and figure out which ones didn't make it because they couldn't adapt to the wheat based diet.  But if one looks at everything that could cause failure to thrive, perhaps up until that time, the population was sadly winnowing out those who couldn't adapt.  :(  

 

Now, we're living to adulthood, and yet they're trying to guilt trip us into not being "Like Them"  (this study claimed whole grain wheat eaters were also more slender, to which I say, well, duh !   :angry:  ) because it's easy to grow a certain grain crop family here, imported from Europe imported from the middle east.  Now they wish to export it back.   But who is .... "them ?"  And does North America change "them" into "us ?"  That thought must be really, really scary !

 

   

 

_______

 

Re: the heat intolerance with exercise, if one doesn't sweat normally, as with Sjogren's, which is another condition that tends to go along with celiac, then you can over heat quite a bit unless you take evasive maneuvers, such as wetting yourself down first, wearing a little wet neck scarf filled with crystals that you can put in the freezer to stay cold, selecting the cooler times of day to go out, wearing layers to start and peeling them off pretty quickly, exercising at night, selecting fabrics in clothing that breathe really well, etc. 


  • 0

#25 SeekingSarah

 
SeekingSarah

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 88 posts
 

Posted 22 March 2013 - 08:13 PM

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).


  • 0

#26 GottaSki

 
GottaSki

    "The past is the past...I've got places to be."

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,100 posts
 

Posted 23 March 2013 - 07:27 AM

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

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#27 Takala

 
Takala

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,555 posts
 

Posted 23 March 2013 - 07:38 AM

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

#28 GFinDC

 
GFinDC

    A little farting never hurt anybody... :-).

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,160 posts
 

Posted 23 March 2013 - 08:59 AM

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
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#29 Psyche

 
Psyche

    New Community Member

  • Advanced Members
  • Pip
  • 19 posts
 

Posted 23 March 2013 - 07:47 PM

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

Something witty this way comes...


#30 SeekingSarah

 
SeekingSarah

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 88 posts
 

Posted 24 March 2013 - 09:02 AM

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




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: