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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Why I Still Eat Bread...
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I won't do anything rash right now, but I do need to be 100% certain that gluten is the cause.

My mom feels that this is all psychological, and since last month (August) I've been going to several therapists, so far nothing has helped (other than bringing up a lot of bad childhood memories).

One GI recommended Elavil, it's an old SSRI I think, and makes my stomach feel totally numb between meals (which is good) but does nothing to help when I eat breads/pastas.

Yes actually I am on the "primal" diet right now. :)

I'm a dancer btw, so we have to stay lean, and I only eat fish/seafoods, birds, and some mammals (steak), the meats do not hurt at all. So I know that is okay. I also eat lots of fruits, dairy, and porridges and that's basically about it.

I used to eat a lot of breads/pastas, but obviously... not now.

LASTLY, what I am scared of is if gluten is NOT the cause but rather something that highlights it. This problem is so strange and my mom and my drs are now thinking I'm making this all up, but I swear it is real and the pain is real but no one will believe me. :( *frustrated*

What are your porridges made of? Are they grains?

Also...a very common ingredient in foods is soy. You could have a soy sensitivity.

I think others have pointed out that the best way to narrow down a dietary problem is to cut out everything and eat only a handful of things that do not hurt. Add things back one by one, waiting several days between each addition.

Really simple here, if breads/pastas hurt, they aren't good for you!

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I've been ton dozens of doctors all around LA, I've had an endoscopy and a pillcam and I have seen the images myself, there is no damage.

I have tried going gluten free and wheat free for a couple of months earlier this year in the Spring. When I ate a quarter of a doughnut to challenge wheat again I had the exact same pain and passing out.

I'm just feeling so frustrated, I just don't understand what could be causing this and it's frustrating my doctors too because they worked so hard with me and ordered so many tests we've all run out of ideas on what to do.

This is where I would recommend a test from Cyrex Labs and Enterolab.

I believe that the gluten sensitivity should be tested for before it is treated. It is especially difficult to test for gluten intolerance once gluten is no longer present.

Thought I should add:

If you are still eating gluten and feeling unwell (despite negative test results) I believe a trial of the gluten free diet would be a good idea, based on your symptoms.

All the best. :)

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I testing negative for the blood test and the biopsy. However, i did test positive for gluten intolerance on a saliva test ( i know many traditional drs do not accept it). The point is that a soon as i went Gluten-Free in 2009, my stomach problems got under control. Furthermore, there are great Gluten-Free pasta and bread brands out there. I prefer Schar. Toast the bread a little in your own toaster to avoid cross contamintion. The toasting heats the oils in the bread and gives it a little better flavor. I happen to love the multi grain bread as opposed to white bread.i have even shared iit with friends and family and they love it too.

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Step 1: eliminate all gluten.

Give it a while. See if you feel better. If you do, then you at least have Gluten Intolerance, though it is still possible that you have Celiac if you weren't eating (enough) gluten at the time of your biopsy. But to be honest, that really doesn't matter in the end.

If you still don't feel any improvement after a few months, try (as suggested here too) eliminating milk and soy. If that still doesn't help, then a serious elimination diet might be needed.

In my opinion, the only way you can truly diagnose celiac/gluten intolerance is by going gluten free.

If your family isn't being supportive, then you have to make it clear that the only way you will get better is by not eating gluten. It's not all in your head. It's all in your stomach, and that stomach needs to heal.

We're rooting for you! It's a hard road, but as I said, it's worth it.

Peg

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Now, mostly cottage cheese porridge, boiled turkey meat, things like that.

Only porridge that was bad was one made from semolina (that really hurt for obvious reasons).

I need to find out why breads are hurting, not just avoid them, so far I've narrowed things down to what appears to be gluten (with some contradictions).

I don't want this to be something else that is happening and think that I'm okay just avoiding gluten or wheat.

PS: was gluten-free for a couple of months which I had the endoscopy, problem... plus almost all the labwork were done at Quest Diagnostics, I assume they are reputable?

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PS: was gluten-free for a couple of months which I had the endoscopy, problem... plus almost all the labwork were done at Quest Diagnostics, I assume they are reputable?

My celiac panel was sent to Quest Diagnostics...no problem.

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Have you picked up from reading the boards that damage from gluten can be 'silent' which could mean that you MAY be having a reaction to all gluten but not know about it?

And that lots of people here do not have definitive diagnosis but choose gluten free rather than eat things which CLEARLY make them sick?

Sadly, for many people there is no black and white on what makes us sick, and it can take months for a gluten-free diet to help them feel better.

It seems you really dont like what people here are telling you about. No one wants to tell you what to do, only you can decide.

Maybe you need some professional help to understand/accept what you are finding out. It is really hard. Maybe you could take heart from from folks here who have accepted their situation and started to move on and improve their lives.

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I do listen and I really do think about what everyone says here, I really appreciate everyone taking their time to help me too. :)

I just want to be absolutely sure I am doing the right thing, because I feel like there really is no professional help on this issue (NCGI).

My mom and my doctors just don't understand, they think I am making this up, and they are just not taking it seriously. They think it's all psychological, because all the tests come back normal and I'm so sad and frustrated. :(

I also want to make sure there is not something else, not some other test I missed, in case I have something else. I don't even understand how NCGI can damage something and no damage is showing up anywhere.

PS, just so you know, I don't eat really painful breads (like pizza or pasta), I haven't eaten pasta since December 2012. I only try very mildly painful breads just to test and always a new type of bread each time.

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Is your porridge oats? Unless they are pure oats(certified gluten free) oats are not considered gluten free. They are cross contaminated. Then there are the 10-15% of celiacs(I'm one of them that reacts just like gluten) that can not tolerate the protein(avenin) in the oats itself. So even gluten free oats and gluten free products that may have cross contamination from them are out.

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It's really tough, isn't it?

My bloods were negative, and I am sure the biopsy I had this week will be the same. I have decided I have to go gluten-free, for life, but it was a tough decision.

I'm sorry you are having a difficult time with family etc. Mine are at least sympathetic, even if they dont really get it.

Hopefully you have at least found a place where people understand what you are going through and dont think you are making it up.

I wish you really really good luck finding a way through.

Mw

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If you were indeed not eating gluten when you had your biopsy done, and do want to get a definitive answer on whether or not its celiac, you could do a gluten challenge (start eating it again) for a month or so and then get the test redone. But for that you have to be willing to put yourself through a long period of pain and then healing afterward. Because your symptoms are so severe, that's probably not a good idea. I never had a biopsy done because I couldn't stand feeling like crap all the time any longer. I would never put myself through the pain and long road of healing after just to get a confirmed diagnosis.

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If you were indeed not eating gluten when you had your biopsy done, and do want to get a definitive answer on whether or not its celiac, you could do a gluten challenge (start eating it again) for a month or so and then get the test redone. But for that you have to be willing to put yourself through a long period of pain and then healing afterward. Because your symptoms are so severe, that's probably not a good idea. I never had a biopsy done because I couldn't stand feeling like crap all the time any longer. I would never put myself through the pain and long road of healing after just to get a confirmed diagnosis.

Ideal i believe is closer to 3-4 months.

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Hi Sandra,

You have a good point about the NCGI and testing. It does seem like there should be some tests that would show damage or something possible. However modern medicine is not there yet. It was only this year that a research project showed that NCGI is a real condition, and not something people were making up. There are no tests for it yet. None, Nada, Zip, Goosegg, zilch. Maybe in 10 years or so they will find some way to test for it.

So you have to figure it out yourself.

The way to do that is to do the gluten-free diet for 6 months. Be very strict and don't cheat or eat anything that might be cross contaminated. It is best to not eat any processed foods. Just stick with whole foods only. Don't eat out at restaraunts.

Then after 6 months try some gluten and see what happens. Your bodies reaction is the only test available right now.

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Thanks, though I'm not sure how to explain something like this to anyone...

every time I think I have explained that my pain is real to my mom, the next day she says it's all psychological and I have to re-explain it again.

It's so frustrating.

The porridge I eat is made from cottage cheese and boiled turkey meat. I tried semolina porridge once and that hurt. I actually have never eaten oats before in many years, so I have no idea how I would react to that.

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Thanks, though I'm not sure how to explain something like this to anyone...

every time I think I have explained that my pain is real to my mom, the next day she says it's all psychological and I have to re-explain it again.

You say that you have done the research and are now aware that there are no current medical tests to diagnose Non-Celiac Gluten Intolerance. The only option you have is to eliminate ALL gluten for a period of at least six months to monitor symptom improvement.

Forgive me, but you have been going back and forth about whether your problem is gluten for several months, so perhaps you have confused your mother. Stick to the elimination diet and provide information about NCGI to her if she is open. Ultimately if your health improves gluten-free your mother and others will make the connection and understand the need for you to be gluten-free. Be clear and patient - family and friends often have a hard time understanding how strict a gluten-free diet must be.

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Yes. And to reiterate what GottaSki just said, most people hear "diet" and in their minds it is like a weight loss diet, where you "try" to eat things that will not make you fat, and if you cheat or fail here or there, well you just eat a little less tomorrow.

The gluten free diet is not that kind of diet, and this must be explained. It means that you CANNOT eat ANY of those things, EVER. Today, tomorrow or the next day. And a little bit WILL hurt you. Your mom needs to understand this.

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Sandra,

Up until this morning, all of my drs told me that gluten was not my problem..well ok I did have 2 tell me it was possibly gluten intolerance but the other 2 told me absolutley it was NOT Gluten.

So I kept eating bread. I kept eating donuts and cake. When people said to me "I thought you couldnt have it" I would just say, I can have whatever I want!

In my head, if it wasn't going to kill me, then I could deal with it. To me, without a "diagnosis" and without people believing that it was gluten, then I would just keep eating it and believe that it was something else.

I also just rationalized, its ok, I will eat this donut and be really sick but it usually passes in about 2-3 hours so I will lay down.

REALLY! Thats what I told myself..eat what you want and then lay down until it passes! Because unlike other people, my symptoms do pass in a few hours but it SUCKS while it is happening!!

Gluten intolerance is a real thing. Its a problem. Doesnt matter if a Dr "diagnoses" you or not, its there.

This morning, my dr finally diagnosed me as Celiac, believing that I am at the very early stages. After researching, she NOW believes that gluten intolerance is the beginning stages of full blown Celiac Disease, so she just cut to the chase and said to start living a gluten-free lifestyle now to head it off...

I don't know if it's true, and I think many many many Drs dont really know...yet. But if you feel better when you DONT eat bread/pasta then DO NOT EAT IT!

I had the reverse happen..I keep gaining weight. uncontrollably, it seems. I gained 30 pounds in a month and a half. I went off glute for 3 weeks and lost 6pounds. I started eating gluten and gained 10 pounds..in TWO WEEKS! its crazy how your body reacts, some people lose...some people gain. its CRAZY!

but I say...please stop eating it. It doesn't love you .

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Since my recently rounds of tests are over, I am avoiding gluten. Thanks everyone for helping me through this. :)

But I am still not 100% convinced byself what the problem is. I only tell my mom and my drs that if I eat certain breads/pastas, this happens. And they all say, well your tests are always negative so it means you have no problem.

I also don't want to pin it down to NCGI in case this is still something else, what if its endometriosis or some other abdominal injury I sustained while performing last Christmas (the same time this all suddenly started)?

I feel like I need a bit more time and to do absolutely every test possible to rule anything else out before I stick with NCGI.

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Since my recently rounds of tests are over, I am avoiding gluten. Thanks everyone for helping me through this. :)

But I am still not 100% convinced byself what the problem is. I only tell my mom and my drs that if I eat certain breads/pastas, this happens. And they all say, well your tests are always negative so it means you have no problem.

I also don't want to pin it down to NCGI in case this is still something else, what if its endometriosis or some other abdominal injury I sustained while performing last Christmas (the same time this all suddenly started)?

I feel like I need a bit more time and to do absolutely every test possible to rule anything else out before I stick with NCGI.

IMHO you would be wise to get yourself strictly gluten free now and if you feel strongly that you may have another issue going on being gluten free is not going to effect the testing for other issues.

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Ah doctors, and their darned tests. If you don't pass them, well then it is not something they can deal with. And certainly not if it can be controlled with diet :blink: Far too many people have been told to continue eating gluten because they do not test as celiac, unfortunately. And if you don't listen to your body, but listen only to the doctors, you may continue to harm yourself. You can imagine any kind of disease you might have, but if your body is telling you it is unhappy eating gluten then the chances are pretty good it's the gluten :)

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Yeah, doctors tried to tell me that about my gallbladder as well. You have no stones and your blood work is normal. >.>

Wasn't until they ran a more spacific test about 5 months later that it was discovered -_-. They aren't perfect.

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Far too many people have been told to continue eating gluten because they do not test as celiac, unfortunately. And if you don't listen to your body, but listen only to the doctors, you may continue to harm yourself.

Yep. You can see what having false negative tests did for me by my signature. It took over 40 years and a savvy 80 some year old doctor for me to get a diagnosis.

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Hi Sandra,

Maybe this article will help with the explaining.

Non celiac wheat sensitivity article http://www.nature.co...jg2012236a.html

You can read the abstract for free, but the full article requires a payment. The abstract tells all you need to know for now I think.

One thing about the gluten-free diet, if you don't take it seriously and stick with it 100%, other people won't take it seriously either. It is not a weight loss diet, it is a medically required diet. You can think of it sort of like a diabetic diet, except more strict in some ways. But the gluten-free diet is the only way for a person with celiac to be healthy.

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It can be quite expensive, but try to go to the Mayo Clinic. They FIGURED OUT what was wrong with me. None of the doctors down here in LA (yes I understand COMPLETELY)could confirm what was wrong with me. I too went on a gluten free diet for 4 months starting late last year and I saw no improvement AND I had genetic testing done which "proved" that I couldn't possibly have celiac disease(turns out they misread the results). I later find out at the Mayo Clinic that I DO have a half of each gene that causes celiac disease.

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Thanks for the link, I have a question about the article, it says:

"The main histology characteristic of [wheat sensitive] patients was eosinophil infiltration of the duodenal and colon mucosa"

My GI said he didn't find any in the endoscopy biopsy he took back in Feb, also my CBC is quite normal (overall WBC was rather low).

Is there a specific test to check for eosinophil infiltration?

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