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How Does This Happen?


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#16 kittensmom

 
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Posted 03 January 2013 - 02:53 PM

I am just starting here but I think my trigger was gastric bypass surgery 6 years ago. I didn't realize anything was wrong with me until very recently though. I had no idea why I started getting crazy rashes on my knees and elbows 4 years ago, that have migrated to my fingers and the back of my neck over the past few years. Any stomach issues were very slight and I attributed those to the gastric bypass until a few months ago. That was when I had abdominal pain that had been going on for 3 weeks. I (finally) went to my regular doctor and he sent me to the ER immediately. Was diagnosed at the ER with mild case of colitis, told to follow-up with my regular doctor and a Gastroenterologist, ASAP. Gastro performed a colonoscopy and diagnosed me as having the genitic markers for Celiac. They advised me to "look into" going gluten free. Until I started reading posts here I had no idea how important gluten-free really is and how deeply it can affect every system in our bodies. I can see now how many things I thought were normal may be the result of gluten.
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Thanks,

Kathi M
Diagnosed with Celiac Nov 2012

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#17 GFinDC

 
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Posted 03 January 2013 - 06:48 PM

Welcome to the forum Kathi (Kittensmom).

People with the celiac skin rash (Dermatitis herpetiformis) often don't have many GI symptoms at first. please take a look around the DH section of the forum for tips on dealing with it. the experts on DH hang out there. We can help with other questions about diet and other fun stuff in the rest of the site though. Not that anyone has questions about diet on this site. :)

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

Helpful threads:

FAQ Celiac com
http://www.celiac.co...celiac-disease/

Newbie Info 101
http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?
http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?
http://www.celiac.co...or-lunch-today/
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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

#18 SeekingSarah

 
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Posted 19 March 2013 - 06:49 PM

I am just starting here but I think my trigger was gastric bypass surgery 6 years ago. I didn't realize anything was wrong with me until very recently though. I had no idea why I started getting crazy rashes on my knees and elbows 4 years ago, that have migrated to my fingers and the back of my neck over the past few years. Any stomach issues were very slight and I attributed those to the gastric bypass until a few months ago. That was when I had abdominal pain that had been going on for 3 weeks. I (finally) went to my regular doctor and he sent me to the ER immediately. Was diagnosed at the ER with mild case of colitis, told to follow-up with my regular doctor and a Gastroenterologist, ASAP. Gastro performed a colonoscopy and diagnosed me as having the genitic markers for Celiac. They advised me to "look into" going gluten free. Until I started reading posts here I had no idea how important gluten-free really is and how deeply it can affect every system in our bodies. I can see now how many things I thought were normal may be the result of gluten.

How are you doing? I had RNY in 2003, had what a GI said was IBS for 5 years but just heard that celiac disease could be related to these skin issues I also have so I am pushing for more tests before I go gluten free.


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#19 EmiPark210

 
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Posted 20 March 2013 - 12:11 PM

I think mine was stress triggered. I started having colon spasms connected to IBS during my freshman year of high school in 2006 but it didn't get really bad until my senior year. I started on birth control that year to try to deal with a D/C cycle that lined up with my menstrual cycle. It worked except in high stress situations. The last few months of senior year I started having what I now know was a reaction to stress + gluten that got bad enough towards the end for my mom to take me to see her GI. He prescribed me an antispasitory for the spasms and I had a fluoroscopy done to check on the spasms and I think to see if we needed to do a crohn's test (my mom has it). He also gave me a bucket to collect a stool sample to test for gluten sensitivity but it's still sitting under my sink at home, ignored. I started limiting gluten in college as well as completely taking out any caffeine and carbonated beverages (still don't except for the periodic ginger ale) and maintaing a super "moderation" diet. I noticed that whenever i would eat gluten without protein I would get mild spasms, gassy and had little control over my bowel movements so I made sure to not eat straight pasta but have some meat and that helped. I started also eating pro-biotic yogurt by the tub-ful which helped. I decided to get tested for gluten intolerance/celiac's this past February when I ate two small bowls of pasta over the weekend and almost didn't make it to class on Tuesday because of the pain and feeling like something was going to explode. Blood tests came back positive so here I am! 


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IBS Diagnosis: 2010

Celiac blood results: 2/21/13 Positive

Biopsy: 4/19/13 - visually positive, 4/23/13 - positive


#20 SeekingSarah

 
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Posted 20 March 2013 - 10:28 PM

I was fine my whole life. Walking around with some constipation problems but nothing I wouldn't attribute to having my gastric bypass surgery 3 years ago. My GI tract went a little haywire after that surgery...for good reason...they removed like 2 feet of small intestine or something.

Anyway, I was ok, when suddenly in November, I got this horrible "D" and pain. Bad pain. Then I started throwing up, and didn't stop. It got to the point that I couldn't keep down liquids and had to be hospitalized. I was put in the hospital with horrible vomiting, and horrible pain. Non-specific, gut pain. Then the tests started. A colonoscopy, an upper GI, an ultrasound on my gall bladder. Finally they decided to do a "hida-scan" (I have no idea how its spelled, I just know it sucked...) I spent 2 hours on a hard plastic "table" off of pain meds for 8 hours, crying in pain, when they told me that my gall bladder had to come out. So 2 hours after that I was on an OR table getting my gall bladder removed. After the gall bladder surgery, I felt pretty good. I gained some weight, and things went back to pretty normal (or at least "normal for me".)

Then it started again in June. Pain. Vomiting. But then something new... a distended belly! I mean, we are talking like lookin' 4 months preggo's! Not cool! I just lost all that weight, am finally in a bikini, and now I am all bloated AND in pain?! So the crap began again...tests, know one knew what was wrong, blah blah... It got very frustrating.

Finally I ended up back in the hospital. The GI doctor (who I can only see in the hospital, because he doesn't take my insurance outside of it) said "o, you probably have celiac... your last upper GI biopsy was "borderline", did you start the gluten-free diet?" I was mad! No I said, no one had told me!?!? So he did another upper GI biopsy and a blood test for celiac and sent me on my merry way, telling me to go gluten free. I had the test results sent to my regular doctor (because that GI doc doesn't take my insurance still...grr....) and my regular doctor told me that the results were negative! Negative I said?! How?! I have every symptom of Celiac Disease. I feel 110% better in the 2 weeks of gluten-free while waiting for these stupid test results! If I accidentally gluten myself, I feel like crap! Doc explained to me that the tests for celiac are not very sensitive... and unless I was ingesting ALOT of gluten in the days before the test, and that he hit just the right spot with the biopsy, it's a good chance it's a false negative. I was NOT ingesting a lot of gluten in the days before, because they had me "NPO" (nothing by mouth) for 3 days while hospitalized waiting for them to figure out what was wrong with me again.

Anyway, my doctor's daughter has Celiac, and he knows the disease very well. He said "based on my positive reaction to an elimination diet, he is diagnosing me with Celiac Disease". He then offered to repeat the blood test if I wanted to intentionally gluten myself for a couple of weeks... I said no thanks and moved on.

I've been gluten free for almost 3 months, and I feel amazing! My chronic back pain is in remission, I have normal bowels, my weight is regulated, I am back in a bikini, well...its awesome! I don't know what happened, and I don't know what set it off...but I do know the hell I was going through before the diagnosis...and even that had to come some weird back handed way. Strange little disease. wink.gif (kidding...seriously...this disease is no joke... it's "not playin'!")

Good luck. Hope you get better reason why type replies, but that's just my story.

Ok I'm going to slowly start counting post WLS patients I find here, since from what I ask of surgeons they act they have no knowledge of celiac in post-ops. grrrrrrrrrrrrrrrrrrr  I'll be post op RNY 10 years. My issues started more after a GI bug 5 years ago, but still brushed off as if I was just a none compliant WLS patient. 


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