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I Can't Get A Diagnoses Other Than Ibs....so Frustrating

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Posted 09 March 2012 - 12:50 PM

hi everyone. I'm 24 years old and have had stomach problems since I was a baby. I have had countless blood work, 3 colonoscopys, 2 endoscopys,barium x ray, stomach ultrasound, and allergy testing. I had the skin prick test which didn't show anything. my celiac blood panel came back negative, stomach ultrasound showed gallstones, so I had my gallbladder taken out last year, but still having problems. I got the report from my gi doctor and it said that a single biopsy was taken on my endoscopy. would one biopsy be enough to show celiac? also my blood work showed that I have a iron deficiency. my other symptoms are diarrhea every morning befor I even eat, then more diarrhea after my meals,excessive belching, and tooting, I have had bloody stools, I haven't had a period since October 2011. I just got diagnosed with pcos. my dr. gave me the diagnoses of IBS. I also have really bad eczema all over my skin. and creams don't seem to help. I don't know what to do anymore. I've missed a lot of work, because of cramping and diahrrhes, and vomiting. I'm scared to eat out, just I case I can't make it to the bathroom in time. do you think I fit the case for celiac. also how accurate are celiac blood tests. thanks so much for listening.... lizzy :)
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Posted 09 March 2012 - 01:03 PM

No one biopsy is not enough to have taken to rule out celiac and both blood tests and biopsies have a high false negative rate. I could have written your post a few years ago and it is so frustrating to be so sick and get the IBS diagnosis which isn't even really a diagnosis but a symptom.
I would suggest that you get on the diet very strictly, eating whole unprocessed foods and no dairy or soy to start. Your body will give you the answer. I can't say for sure but you do sound like you have found the right place. Read as much as you can here and ask any other questions you need to ask.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)

celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom

Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)



    It needs to be about 20% cooler.

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Posted 09 March 2012 - 01:27 PM

I wouldn't trust a negative blood test. I had my first blood test done while when I had an ERCP after several days of not eating at all. A single biopsy came back positive but that blood test and one done about a week or two later were both negative. The biopsy report was pretty conclusive, stating that the damage is consistent with celiac. On top of my insurance not covering getting another biopsy done, I really wouldn't have wanted it anyway. I'm not a fan of unnecessary procedures, especially when anesthesia leaves me eating laxatives like they're candy. Barium x-rays are the worst! Reading around a lot of posts here you'll find that the symptoms can vary widely from person to person but I don't think any of us would be shocked if you said you got a celiac diagnosis.

As for eczema, I can't offer much advice as I still spend 100% of my time itchy but I'll share what helps me. Sometimes I'm simply uncomfortable, sometimes I feel like I could crawl out of my skin. It helps some for me to use Eucerin calmin body wash. I also go through a lot of lotions and creams. They don't fix the itchiness but they help some. It makes the difference between tolerable and scratching myself until I bleed while simultaneously being unable to stand the feel of anything, even myself or the air touching my skin. I'd sooner not wash my hands after using the restroom than to wash them if I left the house without lotion. (Yeah, gross vs. being driven criminally insane. Both options suck.) I was told by customer service that Neutrogena hand cream is gluten free so should be fine to use. (I get the fragrance free one, but love the smell of the smelly one.)

Last tip, buy a back scratcher. I picked up a cheap wooden one at a Walgreens for like 3 or 4 bucks. Now that I have it I couldn't imagine life without one. Once you have one you'll wonder how you ever lived without one. It truly is a life changing experience when eczema has you on the brink of itch induced insanity.

Don't give up hope! Someone will wander around after me and tell you how they were diagnosed with IBS (which is not-so-affectionately called I be stumped around here) and it turns out it was celiac all along. Worst case scenario, if you have an uncooperative doctor you can always go gluten free and see if that helps any.
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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."


Celiac DX Dec 2012

CRPS DX March 2014



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Posted 09 March 2012 - 07:09 PM

I am first timer here too so i cant really give any answers.

Just letting you know that you are not alone in having issues. I have PCOS as well, I got disagnosed one year ago but not anything other.

I am do researching to see if PCOs does really be caused by the gluten diet plus other food intolerance? Just let you know that I am still learning more about this disease and intolerances everyday. However, welcome here! B)
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Still in process of searching for answers to my symptoms

Disagnosed with PCOs Dec 2010
Disagnosed with Asthma Sept 1993



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Posted 09 March 2012 - 08:51 PM

Welcome to the club, I think almost everyone here has been diagnosed with IBS at some point.. my blood work was positive / neg biopsy - both doctors swear it can not be celiac...but I'd trust your gut, keep a food diary and start out slow - eat normal foods but take out one thing at a time (Gluten, Casein, Lactose, Rice, etc.) It might take a while to rule out or find some of the foods that are causing the most pain but it does give you some answers! I hope you find your triggers and get some relief. There are ALOT of books out there written for people like us also, it makes it easier to understand what good methods of shopping and prepairing foods.
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Posted 09 March 2012 - 09:05 PM

You poor thing. Yes the blood tests are inaccurate and one biopsy is not enough because damage can be patchy. You could also just be very gluten intolerant which wouldn't show up on tests. Just go gluten-free and see if it helps any. :) As ravenwoodglass suggested, go simple. Soy and dairy are hard to digest and if you're belching and tooting a lot starchy foods and beans can make it worse. Lots of stewed meat and veggies, a little fresh fruit, and take a good probiotic, one with 10 billion+ colonies a day.
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