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Biopsy Negative...crying


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31 replies to this topic

#1 Stellar003

 
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Posted 16 March 2011 - 07:25 AM

So my biopsy and TTG tests came back negative and I feel hopeless and confused.
I was putting so much hope in a Celiac diagnosis...
I'm confused about gluten intolerance vs. Celiacs and I want so badly to be
done with this diagnostics phase!!! So my gliadin levels are high and I'm gluten
free going on three weeks and I am seeing some changes in my D and possibly
energy...the last 20 years have been a big hazy blur and I can't stand the thought
of not knowing what has been wrong. I just wanted a solid diagnosis. I want to be
able to explain to people that I love why I've been so out of it all these years
and now I'm scared that being gluten free might not make me feel alive again,
that I might be back to square one of having no idea what the hell is wrong
with my body. It sucks to hear from a physician that in general my labs look great. What good
are good looking labs when I feel like a zombie?? My joints hurt, my memory is insanely awful
and I cannot remember what a normal stool looks like. So frustrated and down :(
Any words of advice?

~Stephanie
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#2 etta694

 
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Posted 16 March 2011 - 07:50 AM

I have read so many posts of people who have had negative test results but they feel better on the diet. People with very bad symptoms, I might add. This is not unusual to have negative test results but still be sick from gluten.
I only had a biopsy, it was negative but it is like night and day when I eat gluten. I get very sick. (And my doctor was very happy to tell me I didn't have ANY problems!) I know they are wrong.. based on how well I feel now.
My advice.. stay on the diet if you are feeling better because it will just keep getting better.
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Anemia and IBS through my life
2005 Joint pain, exhaustion, general feeling of not being well 2006 Beginning of testing for everything but Celiac 2008 Bloating, more muscle stiffness, feeling sicker, more exhausted-testing 'normal' 2010 March insides begin to shut down, cough that won't go away 2010 June Colonoscopy, Endoscopy, biopsy - all show no problems
Self diagnosed gluten intolerant - went gluten free. Within 3 days feeling better.
After 5 days - insides began to move
Now - feel better than I have felt for 15 years (except when I gluten myself.. which I'm good at)

#3 azagave

 
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Posted 16 March 2011 - 08:34 AM

Don't give up hope. You can be Non-Celiac Gluten Sensitive and have all the same symptoms except sever sprue. I had a dna test and stool test which is how I found out that I am NCGS. I also carry the genes for Celiac... I was told that you need 3 things to develop Celiac which are 1. The genetics 2. Gluten in the diet 3. A stressor (which is different for each individual). So by eliminating the gluten from my diet which has taken away 99% of all sensitive symptoms I have effectively eliminated my chance of developing full on Celiac. Honestly- do the diet for 30 days and be strict & diligent. You will know by how you feel... I used enterolab.com
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EnteroLab Results: Elevated Anti-gliadin IgA
Carry Genes: HLA-DQB1*0201/HSA-DQB1*0302 Celiac Genes
DQ1/DQ2 (Subtype 2,6) Gluten Sensitivity Genes
Told I am Gluten Sensitive and Celiac is just a matter of when due to the genes and elevated Anti-gliadin IgA. Was told to go off gluten forever and my children may carry the genes and/or have the disease. Started gluten-free on 8/1/09.

#4 Happyw5

 
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Posted 16 March 2011 - 09:10 AM

I felt the same way when the dr told me it was all normal...I just knew it was what was wrong, and now the dr told me it wasn't. I have been on the diet since Jan 5 and it took a little over a month to see a really big difference. It is so easy to avoid gluten now. I know that it was a problem for me even with the tests say. I was glutened over the weekend and I have had gas-belly aches-and D, I will definitely be more careful now (especially at my mother in laws)... Stick with the diet!
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#5 zus888

 
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Posted 16 March 2011 - 09:41 AM

How can your doc say that the tests were normal when the gliadin antibody is high??? That doesn't make any sense. To me, that screams "GLUTEN INTOLERANT!" The positive gliadin antibodies are telling you that your immune system is reacting to the protein in gluten (i.e. gliadin). If you didn't have an immune system response to it, then the labs wouldn't be high at all. Obviously, you are reacting to gluten and you immune system is putting on a full-on attack on it whenever you ingest it. AND when your immune system is constantly being bombarded like that, your body will be affected. It causes chronic inflammation, which can lead to a whole host of other issues. Go on the diet and never look back. You will most likely see that it's been gluten all along and many years from now, when the medical field finally catches up to what you already knew, you can say, "I told you so."

Good luck!
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Suzanna

#6 ravenwoodglass

 
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Posted 16 March 2011 - 12:01 PM

Positive blood tests trump negative biopsy. False negatives in both are all to common. Your blood test was positive and some doctors are even skipping the biopsy when that is the case. Do stay on the diet strictly and you will likely be feeling much better very soon.
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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)

#7 gf_soph

 
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Posted 16 March 2011 - 10:39 PM

I know it's hard when you don't tick all the boxes for a clear celiac diagnosis, but as others have said, the positive antibodies really do mean something.

I had positive antibodies (gliadin was about 4 times normal and ttg was about twice normal) and a negative biopsy, but I was convinced by the gastroenterologist that I didn't have celiac so there was no way that gluten was making me sick. He actually told me not to even bother going gluten free.

I wasted another year of my life in sickness and misery before a good dr told me that gluten was the reason I was so sick. She considers me a celiac, and has referred me to other drs as such. I suffered from awful depression, massive deficiencies and horrible gi symptoms, and if I had gone gluten free when the antibodies were first detected I am sure that it wouldn't have been so bad, and it wouldn't have been so hard to regain my health.

I am technically gluten intolerant, but gluten destroyed my health and over 2 years gluten free I am still healing. Please give the diet a very long and thorough trial. I found a few minor symptoms resolved very quickly, but it did take months for my digestion to start to improve and my depression to lift. It's taken even longer to slowly regain my health, but that has been due to other intolerances causing symptoms and messing with my digestion. The point is that you need to see it as a journey with a long timeline, and don't give up if you don't feel amazing in a month or two.

We are finally starting to see some research in to gluten intolerance, and i think in 5-10 years there will be a far greater understanding of the seriousness of our condition. But until then, you will have to listen to your body and the lovely people here and let your own research inform your understanding of your gluten intolerance. It is real, it is serious, and you do have to be 100% gluten free, and avoid all cross contamination.

Good luck and i hope you feel better soon, I know exactly how it feels to be where you are, and it's hard work!
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#8 Stellar003

 
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Posted 17 March 2011 - 05:03 AM

Thanks so much guys. I feel better today.
Just felt a little shock to the system when
it seemed I no longer had the support of the medical
community per se. It seems there is a lot to be learned
about all of this. Thank you for your words of support.
It truly helps knowing I am not alone.
:) I have no intention of giving up on gluten free
regardless!

~Stephanie


I know it's hard when you don't tick all the boxes for a clear celiac diagnosis, but as others have said, the positive antibodies really do mean something.

I had positive antibodies (gliadin was about 4 times normal and ttg was about twice normal) and a negative biopsy, but I was convinced by the gastroenterologist that I didn't have celiac so there was no way that gluten was making me sick. He actually told me not to even bother going gluten free.

I wasted another year of my life in sickness and misery before a good dr told me that gluten was the reason I was so sick. She considers me a celiac, and has referred me to other drs as such. I suffered from awful depression, massive deficiencies and horrible gi symptoms, and if I had gone gluten free when the antibodies were first detected I am sure that it wouldn't have been so bad, and it wouldn't have been so hard to regain my health.

I am technically gluten intolerant, but gluten destroyed my health and over 2 years gluten free I am still healing. Please give the diet a very long and thorough trial. I found a few minor symptoms resolved very quickly, but it did take months for my digestion to start to improve and my depression to lift. It's taken even longer to slowly regain my health, but that has been due to other intolerances causing symptoms and messing with my digestion. The point is that you need to see it as a journey with a long timeline, and don't give up if you don't feel amazing in a month or two.

We are finally starting to see some research in to gluten intolerance, and i think in 5-10 years there will be a far greater understanding of the seriousness of our condition. But until then, you will have to listen to your body and the lovely people here and let your own research inform your understanding of your gluten intolerance. It is real, it is serious, and you do have to be 100% gluten free, and avoid all cross contamination.

Good luck and i hope you feel better soon, I know exactly how it feels to be where you are, and it's hard work!


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#9 Jill0711

 
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Posted 18 March 2011 - 07:25 AM

You also need to remember that damage in the small intestine can be splotchy so, even if multiple biopsies are taken, it can be missed. I say that you need to base it on how you feel because testing is still so unreliable. I know that it is frustrating, but trust your instincts.
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#10 Looking for answers

 
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Posted 18 March 2011 - 10:27 AM

This is a very good article for you to read and consider:

http://online.wsj.co...3522456636.html

To me, it reinforces the importance of remaining gluten free despite an "official" diagnosis.
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2010- Gluten, Soy, Corn, Dairy, Eggs, Nut free. Sugar, non-gluten grains lite(Yes, still plenty to eat!)
2010-Doctor diagnosed me as Celiac then took diagnoses back, then said avoid gluten for life
2009 Low T3 thyroid hormone, muscle twitching and adrenal fatigue
2006- Elevated Speckled ANA. GI suggested Celiac. Started gluten-free diet, but sloppily
2005 - Thought I had wheat "allergy." Stopped eating bread, oats problem too
College years - Still vegan -sickest point in life. Every classic celiac symptom
Teenage years - Stomach pain prompted veganism -> BIG mistake!
Child - Awful gas, D, C. Chronic infections, appendix and tonsils removed

#11 jebby

 
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Posted 18 March 2011 - 11:16 AM

This article was just published in the March 9th BMC journal, A. Fasano is one of the authors. It is one of the first articles I've come across in a medical journal to acknowledge that gluten sensitivity/intolerance is a true diagnosis. Hopefully there will be more to come.......

Divergence of gut permeability and mucosal immune gene expression in two gluten-associated conditions: celiac disease and gluten sensitivity.

Sapone A, Lammers KM, Casolaro V, Cammarota M, Giuliano MT, De Rosa M, Stefanile R, Mazzarella G, Tolone C, Russo MI, Esposito P, Ferraraccio F, Carteni M, Riegler G, de Magistris L, Fasano A.
Abstract

ABSTRACT:

BACKGROUND: Celiac disease (celiac disease) is an autoimmune enteropathy triggered by the ingestion of gluten. Gluten-sensitive individuals (GS) cannot tolerate gluten and may develop gastrointestinal symptoms similar to those in celiac disease, but the overall clinical picture is generally less severe and is not accompanied by the concurrence of tissue transglutaminase autoantibodies or autoimmune comorbidities. By studying and comparing mucosal expression of genes associated with intestinal barrier function, as well as innate and adaptive immunity in celiac disease compared with GS, we sought to better understand the similarities and differences between these two gluten-associated disorders.

METHODS: celiac disease, GS and healthy, gluten-tolerant individuals were enrolled in this study. Intestinal permeability was evaluated using a lactulose and mannitol probe, and mucosal biopsy specimens were collected to study the expression of genes involved in barrier function and immunity.

RESULTS: Unlike celiac disease, GS is not associated with increased intestinal permeability. In fact, this was significantly reduced in GS compared with controls (P = 0.0308), paralleled by significantly increased expression of claudin (CLDN) 4 (P = 0.0286). Relative to controls, adaptive immunity markers interleukin (IL)-6 (P = 0.0124) and IL-21 (P = 0.0572) were expressed at higher levels in celiac disease but not in GS, while expression of the innate immunity marker Toll-like receptor (TLR) 2 was increased in GS but not in celiac disease (P = 0.0295). Finally, expression of the T-regulatory cell marker FOXP3 was significantly reduced in GS relative to controls (P = 0.0325) and celiac disease patients (P = 0.0293).

CONCLUSIONS: This study shows that the two gluten-associated disorders, celiac disease and GS, are different clinical entities, and it contributes to the characterization of GS as a condition associated with prevalent gluten-induced activation of innate, rather than adaptive, immune responses in the absence of detectable changes in mucosal barrier function.
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#12 zus888

 
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Posted 18 March 2011 - 01:14 PM

"GS as a condition associated with prevalent gluten-induced activation of innate, rather than adaptive, immune responses"

Can someone translate this?
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Suzanna

#13 jebby

 
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Posted 19 March 2011 - 10:20 AM

In immunology there are two main categories of immune cells, T cells and B cells. I think that they mean that celiac disease is T-cell mediated (adaptive) like most other autoimmune diseases (lupus, RA, Crohn's, etc.), and that gluten sensitivity is B-cell mediated, or innate), more along the lines of an allergic disorder of sorts. Toll-like receptors (TLRs) are a huge topic in immunology right now. If gluten sensitivity is TLR mediated, than the possibility of a cure or treatment in the future is very promising!

"GS as a condition associated with prevalent gluten-induced activation of innate, rather than adaptive, immune responses"

Can someone translate this?
[/quote]
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#14 Stellar003

 
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Posted 21 March 2011 - 10:07 AM

Thanks for the information on gluten sensitivity. It looks like there aren't a ton of people
researching it, but it isn't unheard of.
I am so thankful for this forum! It's so good to feel like there are other people who understand.
~Stephanie
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#15 Evangeline

 
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Posted 21 March 2011 - 10:47 AM

I just read in the news that they've discovered there are TWO types of Celiacs: Those who have damaged villi in the intestines and those who do not. Try getting gluten sensitivity stool test at www.EnteroLab.com for $99. They have an accuracy rating of around 96% and have very good reviews online. They were the only laboratory to correctly diagnose me. :)
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