Biopsy Negative...crying

[Stellar003]

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

[etta694]

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.

[azagave]

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

[Happyw5]

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!

[zus888]

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!

[ravenwoodglass]

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.

[gf-soph]

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!

[Stellar003]

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!

[Jill0711]

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.

[Looking for answers]

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

Open Original Shared Link

To me, it reinforces the importance of remaining gluten free despite an "official" diagnosis.

[jebby]

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.

[zus888]

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

Can someone translate this?

[jebby]

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?

[Stellar003]

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

[Evangeline]

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.

[Igg postive]

Dr. Sheila Crowe (GI doctor who specializes in Celiac Disease) says:

"So how do we know who really needs to be gluten-free?

Some patients have symptoms of celiac disease but do not have an abnormal intestinal biopsy that is taken before starting a gluten-free diet (by definition, they are not categorized as having celiac disease). If blood tests show that such patients also have antibodies to tissue transglutaminase (TTG) or deamidated gliadin peptide (DGP), I would suggest that these individuals consider going on a truly gluten-free diet, since they are most likely on their way to celiac disease."

The whole article is at:

Open Original Shared Link

Do you think this statement applies to you?

[WinterSong]

I've also read that some people with Irritable Bowel Syndrome (the symptoms of which are very similar to Celiac) actually do very well on a gluten free diet. Have you looked into IBS at all?

[ravenwoodglass]

I've also read that some people with Irritable Bowel Syndrome (the symptoms of which are very similar to Celiac) actually do very well on a gluten free diet. Have you looked into IBS at all?

IBS isn't really a diagnosis it is a symptom. Since testing has so many false negatives it is a good idea for anyone with IBS symptoms to give the diet a good strict try after all celiac testing is done. Many of us that suffered undiagnosed for years were told constantly that we had IBS when what we really had was celiac or gluten intolerance. Sometimes the body can give us the answer that testing can not.

[cszymanski12]

Reading your post brought me back to not too long ago how I felt/still do feel. It is something that many don't understand besides those who may be going through it. The most unfortunate thing is that the patients (us) know more than alot of these doctors. There is so much research continually being done to try to help those who are fighting for their diagnosis and better health to find it sooner rather than later. Im in my 20's now and I cant tell you how many doctors I seen. Each time walking out of the office in tears wondering if I really was crazy. I researched everything and I educated myself because I knew all along that was what was going on with me. I had friends who had it who pushed me to keep trying to get a diagnosis and that there was a doctor out there that would help me I just had to find them. My diagnosis is still in its process even though its been almost a little over a month since I was diagnosed. My GI actually didnt even end up diagnosing me my allergist is the one who pushed the matter and the tests. I guess having another doctor push my doctor helped a little. I am having my biopsy redone and my blood test in upcoming may so that my GI can make see from him doing both things that I am coming back as positive for celiac or not. Which, if those come back neg it doesnt mean that I necessarily am not celiac. I have the confirmation that I have GS right now and thats enough for the time being to give me a small amount of closure. There are sooooo many different ways that celiac disease is misdiagnosed or the tests are improperly being handled, selected or interpreted in regards to the patient.

If your biopsy is neg it may not be a true neg. You may have patchy areas where the villi have atrophy, or if you have only partial atrophy the blood test will not pick up on it and it will come back neg. My friend's mother actually had villi atrophy in her colon that her GI found. THere are several tests for sensitivity including the stool/mucosa, and that ENTEROLAB test is very reliable and I would recommend it I myself had often considered it. There are also other sensitivity tests that can be used. THere is one other method that I have heard very little about being used specifically because its invasive. A tube is swallowed by the patient and the GI takes a sample of the intestinal fluid and very often they find the antibodies in there as well. You know your body better than anyone do not give up just because someone who wears a white coat with a degree and has the title to diagnose you stop you from getting better. I have nothing against doctors because there are many who will help their patients but that number is so small. I myself am in the medical field I am a veterinary professional and we treat our patients with the very best care and no diagnosis is left out nor unsolved.

I am so sorry you are going through what you are going through, however, you are not alone and many of us have been in your shoes and still are at one point or another. Everyone is here to give advice and share the knowledge that we obtain as we get stronger in dealing with this. Many have also self diagnosed themselves and NO that is not at all a bad thing to do. If the gluten-free is working then screw the doctors I dont know how many told me that on here and regardless if I would have gotten a diagnosis or not I would have done it myself. I have other health relations aside from this now and I imagine it only getting worse if I was untreated.

You will be surprised how things unfold in the end. A allergist and the nurse practitioner are what helped me get to where I am and I never imagined that. I was placed in the hands of a better doctor who is doing so much more for me and has found me a proper dermatologist to take biopsies of my skin. I have medication for my IBS and I see such a difference. Even though Im no where near out of the "fog" here I am somewhere further than before. gluten-free is what has saved my life and many others as well. I now cant have soy either or certain types becasue I found out it triggers my IBS. My advice is any questions you have ask them on here I have just been amazed how much help I had gotten and my dear friend who has been a celiac for a good 5 years now helped me immensely. I learned so much including that I had to get gluten-free toothpaste and to use Johnson's baby shampoo/lotion to shower because of the rashes being opened and the risk of the reg products and cosmetics i used getting into my skin. There are also several books and I HIGHLY recommend them they are reliable hence far in my experience and I love them. THere is one that is wonderful its call "The Gluten Collection" by Shari Lieberman. Its fantastic Im serious it has extensive information on Gluten sensitivity and celiac disease as well as the differences. Most importantly the very many things that celiac is misdiagnosed as case studies of examples and recipes, ingredients to stay away from and the good ones. ALso tests and so much more its honestly like a bible to me I refer to it so often.

And once you start to get the hang of it which is my current issue because its been so emotional for me is the food. THere are so many gluten-free options now and stores have sections in them and stores are supportive of us and the food is actually very good and regardless I wouldnt ever go back to what I had before because of how god awfully sick I get its not worth it. Restaurants are also steadily adapting their menus to celiacs as well. You can still enjoy food u used to love u just have to find the safe version of it which is what is hard for alot of us. I loved bread and its so frustrating to not be able to ever eat my italian bread again but my gluten-free bread I have made my favorite now because I know that its whats best. I hope this has helped you and I hope you get to feeling better soon. I still am not myself but slowly getting there it takes a while and your body may still get ill on gluten-free but give it some time. You will be amazed how everything you have been experiencing pieces together to this source and its scary at first to think that gluten can be so poisonous to our bodies. My mother was tested and she tested positive and shes almost 60 now and shes been so sick but never got help she learned to live with it and now has osteoporosis, anemia, arthritis, and IBS almost IBD now etc. THose of european nationality have a predisposition in a form as well. You dont have to be born there but someone down the line was. In europe now everyone is tested for celiac disease and there is a Codex law which inquires that all food labeled gluten-free is gluten-free 100% and free of wheat etc. guaranteed and most food there is gluten-free now. I am 50% Polish and 25% German all makes sense to me now. And this isnt the case with everyone just another thing that can vary from case to case with celiac. I apologize for the extensive response but I want to help others as much as I can especially since I myself am still learning. Feel better soon

[katiekay]

I am new to celiacs. So totally confused here...

I thought you could have a negative test result but still have celiacs????? Am I wrong about this? Should you do a gluten challenge like I was just reading about??? Any answer would also help me as I begin this journey...

[cszymanski12]

I am new to celiacs. So totally confused here...

I thought you could have a negative test result but still have celiacs????? Am I wrong about this? Should you do a gluten challenge like I was just reading about??? Any answer would also help me as I begin this journey...

There is both the biopsy which so many doctors love to call the "gold standard" which it can be and there is the blood test which will test for the antibodies in the blood. Yes you can have neg results and still be a celiac, however there are different variations to that. My post above yours explains partially about testing and I know many of the more experienced members can elaborate on that for me and explain that to you a little better I do not want to mislead you with the specifics of the blood tests. In some cases researchers have found that celiacs can primarily appear as gluten sensitive first because they have not had the length of time for their villi in to become flattened and its caught early enough. If left untreated then there is a grave possibility they can/will become full blown celiac. However, they have still seen some that are GS and go gluten-free and later in life are then full blown celiacs. I find loop holes in some of the research sometimes but its a growing process still. The sooner you go gluten-free the better you will save yourself so much by doing it. I cant speak for much because i didnt go decades of being misdiagnosed but years in my case and you only will get sicker. Its not worth it to be too late. If it is the case where the symptoms are showing up as celiac but the test results are neg you may have an early start to save your body the extensive damage and its in the best interest to go gluten free. I would suggest trying it and see how it works for you, which im sure you will see the difference. WHen going gluten-free it takes commitment so you have to really be careful and stick to it and its hard I am still dealing with the emotions of the life change because Im only in my 20's this was not how I pictured things.

You need to start to get yourself better. Im not sure if you have had any testing at all yet?? Biopsies?? If not and you are scheduled to get them soon or you think it will be soon wait to go completely gluten-free until after the blood test because it can cause a false neg because it will mask your symptoms and will then cause a "error" in your test. The more you know the better off you are especially becaue if you havent already learned you will that doctors are not very good with diagnosing this disease and the repetition it takes to catch it at the right time and in the right manner. But trying gluten-free things just to see how it reacts with you I suggest if you havent gotten the ball rolling with tests yet. Hope this helps, good luck

[eatlovehope]

Wow Stephanie your story sounds very similar to mine. I too tested negative for TTG & Biospy and the only thing I did test positive for was Anit-gliadin IGA. My doctor too said I don't have Celiac and that was pretty much end of the conversation. But my question was well why did I have a positive Anit-gliadin IGA and she said that it could be a false positive. I was not happy with that respond, so then head to this forum.

After the suggestion from Zu888 I have read the book Healthier Without Wheat and it really has confirmed in my mind I am not Celiac Disease but I do have non-celiac gluten intolerance.

As per the book it states

"Gliadin is a type of gluten. When the immune system attacks gluten, it produces gliadin antitbodies. If you have gliadin antibodies, then it is apparent that your immune system has interpreted that gluten is not food; it is a foreign invader that must be eliminated from the body. It attacks any gluten you eat. If either your IgA or IgG gliadin antibody test is positive, then you have a strong immune reaction to gluten and thus a gluten intolerance".

Basically the only different between the Celiac Disease and non-celiac gluten intolerance, is that in Celiac Disease you have Villous atrophy (damage of villi in the stomach), while symptoms & treatment are exactly the same for both.

I too was so confused but now I'm positive that I have non-celiac gluten intolerance and will live a gluten free lifestyle for life.

Hope this helps, the book is definitely a great read and really puts everything into content

[ravenwoodglass]

I am new to celiacs. So totally confused here...

I thought you could have a negative test result but still have celiacs????? Am I wrong about this? Should you do a gluten challenge like I was just reading about??? Any answer would also help me as I begin this journey...

Yes you can have celiac and still test negative. If you are doing well on the diet you may want to just stay on it. If you feel strongly that you cannot stay gluten free without a diagnosis then you can do a 3 month gluten challenge and load up on gluten and get retested. If you have been gluten free for any length of time and you need to be gluten free then the challenge is likely to make you feel very ill. That IMHO is diagnostic in itself and you would of course go back to the diet strictly after that challenge was done no matter what the test results.

[cszymanski12]

Wow Stephanie your story sounds very similar to mine. I too tested negative for TTG & Biospy and the only thing I did test positive for was Anit-gliadin IGA. My doctor too said I don't have Celiac and that was pretty much end of the conversation. But my question was well why did I have a positive Anit-gliadin IGA and she said that it could be a false positive. I was not happy with that respond, so then head to this forum.

After the suggestion from Zu888 I have read the book Healthier Without Wheat and it really has confirmed in my mind I am not Celiac Disease but I do have non-celiac gluten intolerance.

As per the book it states

"Gliadin is a type of gluten. When the immune system attacks gluten, it produces gliadin antitbodies. If you have gliadin antibodies, then it is apparent that your immune system has interpreted that gluten is not food; it is a foreign invader that must be eliminated from the body. It attacks any gluten you eat. If either your IgA or IgG gliadin antibody test is positive, then you have a strong immune reaction to gluten and thus a gluten intolerance".

Basically the only different between the Celiac Disease and non-celiac gluten intolerance, is that in Celiac Disease you have Villous atrophy (damage of villi in the stomach), while symptoms & treatment are exactly the same for both.

I too was so confused but now I'm positive that I have non-celiac gluten intolerance and will live a gluten free lifestyle for life.

Hope this helps, the book is definitely a great read and really puts everything into content

I just read your comment and this book sounds like a great one. Do you have any suggestions where I would have the best luck to find it like amazon or any stores?? This would be a huge help for me since I too am non-celiac gluten intolerant. I have become very fond of reading these books and they are also very comforting. The one that I also have that I love if you look at one of my responses I placed above I think you would also find helpful since it gives you so much helpful information and helps you understand the difference and how to best manage with which ever you are diagnosed with, even though they are very similar except for the true celiac has villi atrophy which i seen u also mention. Just a suggestion Im willing to share my resources with everyone.

[cszymanski12]

Yes you can have celiac and still test negative. If you are doing well on the diet you may want to just stay on it. If you feel strongly that you cannot stay gluten free without a diagnosis then you can do a 3 month gluten challenge and load up on gluten and get retested. If you have been gluten free for any length of time and you need to be gluten free then the challenge is likely to make you feel very ill. That IMHO is diagnostic in itself and you would of course go back to the diet strictly after that challenge was done no matter what the test results.

I actually have a question regarding eating gluten again before you are going to get tested which for me will be the second time. I am non-celiac gluten intolerant but my GI wants to do the tests at his office so he is comfortable with my diagnosis. I dont quite understand why he didnt just do them and then have me get the other tests but he seems to do everything out of order. I am content with what my diagnosis is currently and its the same treatment I never wanted a serious diagnosis and as long as I get to my old self I didn't care. Little by little I have been feeling so much better with gluten-free and the elimination of the soy which i had no choice and lactose. You guys were right its remarkable how much better you will feel. Do you have a suggestion on how soon before Im going to get tested I should start loading up on gluten? I don't want to go through the battle any longer than I have to, I have read and heard that 3-4 weeks before you should go back on it but I figured there might be variations to that. Also, I know this might sound strange but for the best interest in getting the most accurate results possible is there anything that is recommended to be eaten specifically I was told bread by a friend that is a celiac she said like 6 or so pieces of bread a day. I have a little over a month until my test again so I wanted to make sure I would ask since I always can count on everyone here for help.