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

[SeekingSarah]

Last week in the middle of the night half asleep I heard Jennifer Esposito mention her scalp fire on the Today Show being related to celiac disease. I was shocked and relieved all at the same time. At this very moment I have painful scalp sores, I've dealt with episodes of these sore for years, I have thick hair, at one time it was thought hair clips were rubbing spots but I don't wear hair clips etc. Given my GI symptoms too I decided I need to press further for real testing for celiac disease.

 

I had RNY gastric bypass in 2003. I was once over 500lbs. I lost down to 250lbs. In the past 5 years I've regained back to nearly 400lbs despite healthier eating, exercise. I never gained at this rate during my younger years of eating junk fast food 3x a day. I am 35 years old. 5 years ago I volunteered in New Orleans, we worked in several flooded buildings upon return I had severed GI trouble and thought I picked up a bug. Very bad diarrhea, my PCP took samples and gave me antibiotics, things cleared up some what but I still had daily loose stools, yet I was also constipated where I had strain very hard. My mornings were spent at least an hour trying to fulling empty my bowels and I'd still feel the urge to go...or at least spasms the rest of the mornings. When nothing relieved this she sent me to see a GI doc. He said he'd order blood test for celiac but he didn't suspect it since celiacs are under not over weight (oh I could just shake him now), I do not know what exact test he ran, he said it was negative. He did a colonoscopy to rule out chrohns, it was normal, I knew that, I had one in my 20's due to bleeding (hemmroids) and was told I never needed another until I was 50. So with all that he said I had IBS and send me on my way with little blue pills...dioxycycline to take for the spasms.

 

I found a bit of relief with eating daily greek yogurt and taking probiotic pills...relief as in perhaps my mornings wouldn't be filled with spasms but I would still have an hour of boweling emptying...2-3 times usually because etc...loose...gas.

 

Reviewing other symptoms I also have low B-12 and Vitamin D of course those can be associate with post-op bariatrics surgery.

 

Again the skin rash, on scalp, around my hairline back of neck and forhead and I had flakey spot on my lip for over a year that would never fully heal, but was not contagious as my boyfriend never got one and I always have a spot on my chin like acne. 

 

Possible related I have lymphedema might just be that going glueten free also helps with the LE. 

 

I have an appt in the morning with a NP locally, oh I moved last year so my main docs are in FL but since that is where a lot of my records and past CT scan, last endo (man I wish I'd had know to push more with that GI doc, I had an endo for hiatal hernia in 2010), So tomorrow morning I am going to ask NP if she might run the blood test again. Then I'm going to either have weight loss doctor in FL do and endo or see a new GI I've already looked up ones that have published articles on celiac disease...I will not take no for answer...to many things point to it now...in my opinion.

[GottaSki]

Oh my goodness.

 

You have had a tough time -- even if you don't have Celiac Disease - we understand.

 

I also think celiac disease is a a very REAL possibility for many of your health problems. 

 

NP is fine, or your primary.  The most important thing to do is demand a full celiac antibody panel now - before you remove gluten.

 

Total Serum IgA

tTG - IgA and IgG

EMA - IGA

DGP - IgA and IgG

AGA - IgA and IgG

 

Sounds like you have recent B and D -- but have them order them again...here is a complete list of nutrient testing.

 

B1, B2, B6, B12, D, K, Iron, Ferritin, Copper, Zinc

 

along with CMP (complete metabolic panel) and CBC (complete blood count) - even if they have been done this year.

 

Demand they all be drawn at the same time to give the best picture with regard to possible celiac disease.

 

Hang in there

[SeekingSarah]

Oh my goodness.

 

You have had a tough time -- even if you don't have Celiac Disease - we understand.

 

I also think celiac disease is a a very REAL possibility for many of your health problems. 

 

NP is fine, or your primary.  The most important thing to do is demand a full celiac antibody panel now - before you remove gluten.

 

Total Serum IgA

tTG - IgA and IgG

EMA - IGA

DGP - IgA and IgG

AGA - IgA and IgG

 

Sounds like you have recent B and D -- but have them order them again...here is a complete list of nutrient testing.

 

B1, B2, B6, B12, D, K, Iron, Ferritin, Copper, Zinc

 

along with CMP (complete metabolic panel) and CBC (complete blood count) - even if they have been done this year.

 

Demand they all be drawn at the same time to give the best picture with regard to possible celiac disease.

 

Hang in there

 

I forgot to mention I have acid reflux and take nexium too and saw that is also a symptom...and oh honey...I'm a natural hanger I didn't even mention then on GI issue like mini strokes..and DVT...and hole in my heart...no no don't cue the violins...all that is has been taken a care of since 2006 and I'm all better in that regard, I am one to stay on top of my health, honestly that is why I've tried to keep asking about these symptoms like something is not right, and I think that GI just thought I was a non-compliant WLS patient eating "bad" foods. My PCP in FL to whom I still see when I go to visit is an angel, she is just out on maternity leave, just had baby last week, but I can't WAIT to tell her that I solved the skin mystery because that has been a puzzle for sure and I think I just thought sensitive skin, but really either the Vit D or B12 shot must have something in them that have set of the sores other than just what I'm eating because they are wicked sore and I started in the D and B 12 regimen late January. So I have an NP I see here in Ohio and she could see me tomorrow so I figure better to get a jump on things, thank you for the list I will take that with me!

[Psyche]

I found a bit of relief with eating daily greek yogurt and taking probiotic pills...relief as in perhaps my mornings wouldn't be filled with spasms but I would still have an hour of boweling emptying...2-3 times usually because etc...loose...gas.

I had a DS is 2009 and it was Greek yogurt and probiotics that were my saving graces as well. We blamed so many of my symptoms and issues on the DS. Now I know different.

Something I was told - post-bariatrics - we can still get false-negatives even because we do tend to eat less of the foods with gluten because of our WLS side effects.

[mommida]

I have heard of the bariatric surgery "triggering" Celiac.  A person may have a genetic inclination for Celiac, but Celiac starts when the immune system reacts to gluten as a trigger to damage normal healthy tissue.

 

There is  Non Celiac Gluten Intolerance that the medical community is now starting to recognize.  Even if your Celiac testing is negative, you should try the gluten free diet.  Continue to EAT gluten until the testing is complete.

 

I am positive you should try a Biotin vitamin supplement.  The average American is usually deficient for Biotin.  Most people don't consume animal livers for taste or just warned off as too contaminated with toxins.  Biotin has no known toxic level for the body and excess is just flushed out of the body.  Talk this over with your doctor.  Biotin helps with hair and nail growth, and METABOLISM.

[SeekingSarah]

Well I saw the NP today armed with my list of tests I wanted, she looked at the scalp sores and mentioned cradle cap, etc I told her I've actually dealt with this for years, my PCP in FL had given me a medical mousse years ago but that I had seen something that made me think it was all related to the IBS issues, Thyroid symptoms (but normal tests), etc etc...she got up left the room and called the GI doctor to ask if his office did Gluten testing ....small city.... but yes he does...ok so she'll send me there so he can do all that...but for now here's some shampoo, and oh here's some new meds for the IBS symptoms in the meantime. *sigh* I really don't want more meds, I just want a confirmation so I can then proceed to go Gluten free...that is the answer...or really pursue an answer you know?

 

So first available appt...May 1. UGH.

 

So my options...of course ask the local GI for appt if someone cancels...but again small city I don't see them dealing with Celiac a lot around here, I'm sure people have it but there isn't a lot of specialists dealt with locally. 

 

Fly back to Miami, University of Miami specifically so if anyone recommends a doctor there, they have all my past CT, and last endo there which was in 2010 but was for WLS related purposes, they also treated for all other issues. Like the TIA, did I see somewhere a link to TIA...wow I'm just overwhelmed.

 

Or try for area doctor 30 min away, no history there, no idea their wait time for appt, etc. There are of course other major hospitals in my state, the one I want to go to that did my WLS 10 years ago Ohio State doesn't take my insurance, my preference right now is Miami, even with flight, I go down to visit my boyfriend who still lives there anyways. It would just be taking the extra $ and time off work than local.

[GFinDC]

Hi Sarah,

 

the University of Chicago celiac center is another option. It might be a closer trip?   There are celiac disease centers IN other parts of the country too.

 

Weight gain may not be the typical celiac presentation, but there have been more than a few people who had weight gain with celiac post on the forum.  Your doctor should be able to order the blood antibody tests without going to a specialist though.  They just draw the blood and send it to a lab for analysis.  That way you wouldn't have to wait to get started on the testing.

[SeekingSarah]

No Chicago would be a 7+ hour drive or a flight which airport is 2 hours away itself =( if I have to travel I'd just go to Miami where they have my records and know my history. Local small town docs are frustrating, my PCP in Miami to whom I still communicate with and see when needed just had a baby last week so she will be out for a few weeks, I say a few because she usually has only taken a month off for her other children. I am waiting to see when she is back, or like I said see where I get with WLS doctor to whom I was seeing in Miami...I'm usually such an advocate for myself guess I should have pushed a bit more 5 years ago.

[GottaSki]

Oh Sarah-

Please do not blame yourself...unfortunately this process can be extremely frustrating.

There is no reason a primary or naturopath can't order the necessary tests....you can even have them done privately for about $200 thru usahealthcheck.com - ill double check that web address when I'm not posting from my cell.

Hang in there - May 1 is not acceptable - we can help find a better option.

[SeekingSarah]

I will call the GI local tomorrow and see if they will just order them early, and if anything the PCP office in FL does love me I have baked them lots of cake over the years,  I might be able to get my PCP's office partner to order them, I already have a planned trip to Miami in two weeks. I have held off on even emailing my PCP, but I cannot wait she will be very open minded to this, it's just not her specialty I understand that, I mean if a GI brushed me off then of course a reg doc isn't going to connect all the random symptoms either. 

[SeekingSarah]

I had a DS is 2009 and it was Greek yogurt and probiotics that were my saving graces as well. We blamed so many of my symptoms and issues on the DS. Now I know different.

Something I was told - post-bariatrics - we can still get false-negatives even because we do tend to eat less of the foods with gluten because of our WLS side effects.

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. 

[SeekingSarah]

So I called the compromise option of the doctors 45 min away larger hospital than local, and guess what they had appt for April 1st! I feel confident that since they are in a larger city (tri-state area) they probably also have more experience also or have seen more cases. Regardless even in Miami it would be starting with a new GI, so I can't avoid having to explain my history, etc all over again, I have current records, tests are outdated by now and I'll just have them sent up, of course if I'm not satisfied with the answer I get...as if they aren't willing to test do endo, etc...then I'll proceed elsewhere. 

[GottaSki]

Sounds like a good plan.

 

Good luck on the 1st

[SeekingSarah]

Sounds like a good plan.

 

Good luck on the 1st

I just read your signature, Can you tell me more about your heat/exercise "allergy"? Two summers ago I started getting short of breath after very little excretion. Ex. Went to outlet mall, was fine walking from car to shop, shopping, but for some reason walking back to car more around noon, carrying a bag, I was winded and it was then difficult to take a deep breath the rest of the day. I'd have the same issue after my water aerobics class,no issue during class, but an hour or so later hard to get a good breath. Inhaler given by PCP wouldn't really relieve the issue. I lived in Miami at the time so of course summers were hot and humid but I had lived there for years and never had this experience. PCP sent to PULM, waste...then she had lungs tests normal, VQ for clots (history of DVT) clear...by this time it was Oct and I wasn't having the issue anymore. Had it off and one the following summer. This past summer in Ohio, perhaps 1x I felt it, nothing to be alarmed about or mentioned to PCP. But now....geez reading your sig...makes me wonder.

[SeekingSarah]

The more I read and see nearly every medical condition or issue I've had in the past 10 years mentioned in relation to Celiac my nature thought is I don't want to keep poisoning myself.   Thank goodness I got that appointment for April 1st. I mean I joked with a friend that I'm "cleaning out the pantry" while making sure I have plenty of gluten in my system for the tests aka eating up my Girl Scout cookies. But all joking aside, mentally this is HARD....oh and I'm sure it will be harder....

[GFinDC]

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.

[SeekingSarah]

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....

[GottaSki]

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.

[SeekingSarah]

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. 

[SeekingSarah]

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

[GottaSki]

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

 

Open Original Shared Link

[mommida]

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.

[SeekingSarah]

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!

[Takala]

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....... 

 

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 !    ) 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. 

[SeekingSarah]

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).