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

gastric bypass lymphedema

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#1 SeekingSarah

 
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Posted 19 March 2013 - 06:07 PM

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.


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#2 GottaSki

 
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Posted 19 March 2013 - 06:20 PM

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 :)


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-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 :)


#3 SeekingSarah

 
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Posted 19 March 2013 - 06:31 PM

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!


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#4 Psyche

 
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Posted 19 March 2013 - 08:31 PM

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.


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Something witty this way comes...


#5 mommida

 
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Posted 20 March 2013 - 08:50 AM

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.


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Michigan

#6 SeekingSarah

 
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Posted 20 March 2013 - 05:26 PM

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.


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#7 GFinDC

 
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Posted 20 March 2013 - 07:21 PM

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.


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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

#8 SeekingSarah

 
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Posted 20 March 2013 - 07:29 PM

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.


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#9 GottaSki

 
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Posted 20 March 2013 - 07:42 PM

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.
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-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 :)


#10 SeekingSarah

 
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Posted 20 March 2013 - 08:21 PM

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. 


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#11 SeekingSarah

 
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Posted 20 March 2013 - 09:56 PM

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. 


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#12 SeekingSarah

 
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Posted 21 March 2013 - 05:23 PM

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. 


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#13 GottaSki

 
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Posted 21 March 2013 - 07:30 PM

Sounds like a good plan.

 

Good luck on the 1st :)


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-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 :)


#14 SeekingSarah

 
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Posted 21 March 2013 - 07:48 PM

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.


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#15 SeekingSarah

 
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Posted 21 March 2013 - 09:35 PM

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....


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