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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?  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

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So I just got a call that I need to get in for an endoscopy and biopsy asap. I was diagnosed with celiac disease off blood work alone 4 weeks ago, and have been gluten-free ever since. So now I have to go back on gluten (and eat it every single day) so that I have a chance at accurate test results from my procedure which is scheduled for December 20th (5 weeks from today).

Nervous about how the next 5 weeks are going to go.... :(

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I know how you feel. I went back on gluten for 7 weeks before endoscope and biopsy on 26th October. My worst coeliac sympton is fatigue and that hit once I was back on gluten. Although I also had bowel and stomach issues, for me the fatigue was the worst. I have to say that I only managed to last it out as I wasn't working at the time. However, the seven weeks which seemed such a long way away at the start, came to an end and once I was back gluten free my health began to improve.

Good luck, hope you don't have too bad a time.

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I know how you feel. I went back on gluten for 7 weeks before endoscope and biopsy on 26th October. My worst coeliac sympton is fatigue and that hit once I was back on gluten. Although I also had bowel and stomach issues, for me the fatigue was the worst. I have to say that I only managed to last it out as I wasn't working at the time. However, the seven weeks which seemed such a long way away at the start, came to an end and once I was back gluten free my health began to improve.

Good luck, hope you don't have too bad a time.

Thanks Navigator. I just hope 5 weeks back on gluten is enough time to show up on the scope/biopsy. I'd hate to go through all of this and then things come back inconclusive or false negative because I was gluten-free only 5 weeks before then. Oh well, I think it's important to try so I'll just bite the bullet. Hopefully I won't get to the point of needing to be off work, but it may come to that. Right before I went gluten-free I had taken a whole week of sick leave and then worked 1/2 days for another week because I just couldn't manage. But that was after a life-time of eating gluten. So...we'll see how it goes!

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Hopefully it will all go well and be worth it in the end!

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Just try and take care of yourself as much as you can. Some of the things I used were bubble baths, reading and going for massages and reflexology. I found that I was slipping into a down and these helped me. I also did a daily countdown and kept thinking 'that's one less day of gluten to go'.

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Whats the point of going back on gluten if the blood tests already say you have celiac? I was also diagnosed by blood test only. Could the blood tests be wrong? I have an appointment coming up for a GI and im thinking they are going to tell me the same thing.

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Whats the point of going back on gluten if the blood tests already say you have celiac? I was also diagnosed by blood test only. Could the blood tests be wrong? I have an appointment coming up for a GI and im thinking they are going to tell me the same thing.

When blood tests are positive they are positive. False negatives are common but not false positives. It is up to you whether you want an endo or not. But if you do want one you do need to keep eating gluten until that is done. Even then you do have a risk of a false negative on the biopsy so go on the diet as soon as the test is done and stay on it even if the biopsies are negative.

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When blood tests are positive they are positive. False negatives are common but not false positives. It is up to you whether you want an endo or not. But if you do want one you do need to keep eating gluten until that is done. Even then you do have a risk of a false negative on the biopsy so go on the diet as soon as the test is done and stay on it even if the biopsies are negative.

I thought I read somewhere that although very rare, false positives do happen?

"One negative aspect of the TTG antibody is that it can be falsely positive in a patient who has another autoimmune condition"

(http://americanceliac.org/celiac-disease/diagnosis/)

I also read a study as well, but it seemed to focus on children (http://www.pediatricsdigest.mobi/content/115/5/1341.full). My ttg score falls within the medium range 20-100 (mine = 79).

However, aside from "just" confirming the celiac disease diagnosis, there are also other reasons to get the biopsy:

"For adults there is another importance for a biopsy, and that is that the biopsy is a baseline for which we follow up. We know about 50% of people who are diagnosed with celiac disease as an adult will not heal their intestine and failure to heal the intestine may be associated with a negative outcome."

(http://www.mayomedicallaboratories.com/articles/hottopics/2010-06a1-celiac-bht.html)

Anyway, I'm certainly no expert (that's putting it mildly!!) but that's what I found after doing some quick internet research. For me, I think it's better to get this data now, and then get on with my gluten-free life after the procedure is done.

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Me again.... Also wondering if the biopsy/scope can tell the difference between gluten intolerance/sensitivity versus celiac?

I don't know enough about all of this. Which is why I'm happy to go to a GI to talk about it all...

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I don't know enough about all of this. Which is why I'm happy to go to a GI to talk about it all...

Same here, im so new to all of this, really looking forward to talking to the GI. It cant come soon enough. Doctor said he's afraid I might have cancer. Scared the hell out of me.

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I don't think just intolerance shows up on intestinal biopsy, only outright Celiac disease does. I think the only way to dx intolerance is to find out how the elimination diet works for you. If you feel better on a gluten free diet, and you have no markers in your blood and biopsy is negative, then you're likely intolerant, but not Celiac. But if you have a positive blood result for Celiac disease, then you're positive. Biopsies are often done incorrectly, or not enough samples are taken, or they're taken from a non-damaged part of the intestine.

Either way, if you feel better not eating gluten, that's what you should continue with. Because I'm fairly certain, as are some doctors, that gluten intolerance can escalate to Celiac disease if left untreated. And by that time the damage may be irreversible.

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Either way, if you feel better not eating gluten, that's what you should continue with.

That's the really weird twist to all of this. I went gluten free for 4 weeks and my stomach only got progressively worse. The bloating and pains ended up stretching all around to my back. I was so sick for the past week my stomach felt like it was exploding. But I never got sick. If anything, I couldn't seem to get my digestive tract moving. Even with all kinds of supplements, digestive enzymes, and natural non-gluten fibre. I was so sick yesterday I left work early. Then I got the call about the biopsy, so I went back to eating gluten right away. It's been 24 hours and I feel BETTER than I did before!?!?!? My stomach pains have almost gone away and same with my lower back pains. Isn't that strange??

Anyway, I'm not trying to say that I don't have an issue with gluten - because I can't deny that my ttg came back at 79. But it's just all so confusing for me. I thought I'd go gluten-free and then gradually start to feel better and it would all come together as a big "a-ha" moment. But it seems like every day that goes by leaves me more confused. Hopefully my GI will help talk it all out with me.

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Same here, im so new to all of this, really looking forward to talking to the GI. It cant come soon enough. Doctor said he's afraid I might have cancer. Scared the hell out of me.

Oh man, that is very scary. Hopefully you get an appointment sooner than later so you can get your answers! I remember when my doctor said I had cancerous cells and had to get a biopsy to see if they were malignant or benign. I am thankful to say that in my case they were benign but I know the anxiety that lasted throughout the process. I pray that your outcome will be the same as well.

Feel free to continue to post as you go through this - everyone on here is so supportive.

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what were you eating typically after you went gluten free? You likely also have other intolerances, or you've overtaxed your digestive system with something while its trying to heal.

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what were you eating typically after you went gluten free? You likely also have other intolerances, or you've overtaxed your digestive system with something while its trying to heal.

As best I could I stuck to non-processed food. Although I did try the occasional gluten-free product, I tried to steer clear of them. I virtually ate the same types of foods as I did before going gluten-free. Lots of fruits and raw vegetables, beans, lentils, dairy products (and I did call the companies to confirm which products had cc risks), eggs, nuts, and....that just about sums it up. Typical day for me would be:

Breakfast: fruit salad (made myself) --->no change from pre gluten-free diet

Lunch: salad or veggies and dip or egg salad on lettuce --->typical pre gluten-free diet except I used to eat the egg salad in wraps

Dinner: stir fry (no soya sauce) on brown rice, or lentil tacos (gluten-free corn tortillas), or vegetarian bean chili --->somewhat similar to gluten-free diet except I used to eat more vegetarian faux-meat type products (like veggie nuggets, mexican veggie ground round, etc)

Snacks: nuts, gluten-free popcorn, glosette raisins (too hard to resist... :rolleyes: ), more frut --->somewhat similar to pre gluten-free diet except I used to eat a lot more crackers and cheese (that was my real guilty processed pleasure = crackers)

So...I don't know. It's strange. I thought maybe I was eating too many beans, so I cut those out altogether with no noticed improvement. And now, after eating Subway, and chocolate chip cookies, and crackers...my stomach is settling down!?! :blink:

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If you're going to do the gluten challenge, my advice would be not to overdo it. I was so determined to make sure that my result would be reliable that I probably ate far too much gluten and I'm pretty sure it slowed down my recovery tremendously :( Don't be tempted to eat more than you need to.

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I, also have been on the self diagnosis/gluten free/ back to gluten challenge/gastroscopy treadmill. Waiting for results, have positive tested for the gene DQ2, though staying on the gluten in case the biopsies are negative, then will ask for the IGa and IGg tests. THEN I am definately going gluten free the majority, anyway because I know how much better I feel on this regime. Good luck with it all.

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    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
    • I also can't have dairy but through a series of experiments and a lot of research I think I've pinpointed my problem. It may or may not be the same for you, but I thought I'd share.  There are two kinds of beta-casein protein A1 and A2. We'll call A1 "bad casein" and A2 "good casein". The two proteins differ only in a single amino acid, but this is enough to make it so that they are processed differently in your guy. Bad casein is actually broken down into a casomorphin, which is an opioid peptide. That does not mean that milk gets you high, or is as addictive as heroin, or anything like that, it just means that it can interact with opioid receptors (which the gut has a bunch of). It's worth noting that opioids cause constipation due to their interaction with the opioid receptors in the gut, and that a lot of people feel like cheese and dairy slow things down, but any connection between the two is pure speculation on my part at this point.  Now here's where things get weird. The vast majority of milk cows in the western world are derived from Holstein-like breeds, meaning black and white cows. In a few select places, you'll see farms that use Jersey-type cows, or brown cows (Jersey cows produce less milk than Holsteins, but many connoisseurs feel it's a higher quality milk, particularly for cheese).  Holstein-like cows have A1 and A2 casein (bad and good), however, Jersey-type cows only have A2 (good casein), unless their genetic line involved a Holstein somewhere in the past, which does happen.  A company in New Zealand figured out how to test their cows for these two genes, and selected their herd down to cows that specifically produce ONLY A2 (good) casein. You might have seen it in the store, it's called A2 milk. Some people have had a lot of luck with this milk, though it still doesn't solve the problem of cheese.  I have suspected, due to trial and error and a few accidental exposures, that I have a problem with A1 casein, but not A2. In line with this: I am able to eat sheep and goat dairy without any difficulty, so at least I can still enjoy those cheeses! I am also fortunate because I'm apparently not too sensitive, as I can still eat cow-milk butter. The process of making butter removes *most* (read: enough for me) of the casein.  However, if I eat cow cheese or a baked good with milk, I get really sick. It's a much faster reaction than if I get glutened. Within minutes I'm dizzy and tired and my limbs are heavy. I have to sleep for a couple of hours, and then, over the next couple of days, I'm vulnerable to moodiness and muscles spasms and stomach upset just as though I'd been glutened (though the brain fog isn't as bad). I actually haven't tried A2 milk yet, mostly due to lack of availability (and motivation, I don't miss milk, I miss CHEESE). However, last year, when I was getting ready to go on a trip to Italy, I had a thought. Once, in the recent past, when I'd been testing dairy, I'd had a slice of parmesan cheese. Miracle of miracles, I was fine. I didn't feel a thing! I was so excited that I ran out and got some brie to eat as a snack. That did not go so well... Turns out parmigiano reggiano is made from the milk of the Reggiana variety of cow which is, you guessed it, a brown cow (they say red). I did a little more research and found that dairies in Italy predominantly use brown cows. So I decided to try something. As some of you may know, Italy is something of a haven for celiacs. It's one of the most gluten-free friendly places I've ever been. You can say "senza glutine" in the smallest little town and they don't even bat their eyelashes. You can buy gluten free foods in the pharmacy because they're considered a MEDICAL NECESSITY. If travelling-while-celiac freaks you out, go to Italy. Check out the website for the AIC (Italy's Celiac society), find some accredited restaurants, and GO NUTS. While I was there, I decided to see if I could eat the dairy. I could.  Friends, I ate gelato Every. Single. Night. after that. It was amazing. Between the dairy being safe for me and the preponderance of gluten free options, it was almost like I didn't have dietary restrictions. It was heaven. I want to go back and never leave.  So that's my story. Almost too crazy to believe.  TL;DR: Black and white cows make me sick, brown cows are my friends.
    • I'm a scientist, and I did a little research into the study. Looks valid and it was published in a respected journal.  http://www.gastrojournal.org/article/S0016-5085(17)36352-7/pdf The science looks solid. As someone who didn't have a super clean cut diagnosis before going gluten free, I'd love to see something like this become available. Then again, there's no doubt in my mind that I can't have gluten, so any additional testing would be purely academic. But like I said, I'm a scientist. I can't help myself. 
    • Update: I have tried calling the company several times and have emailed twice. I have yet to talk to a person on the phone and no one has emailed me back.    I did a little research and they were are already involved with a class action lawsuit about being labeled as salt free and one of the first ingredients is sodium chloride.  I am done with this shampoo because this whole company seems a little shady now! 
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