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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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Silent Celiac Disease

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Hi Recently diagnosed with silent celiac disease on a fluke screening for anemia (which was later discovered to be primarily associated with an ovarian cyst.) Basically, I have no noticeable symptoms of celiac that I would run to the doctor for a cure. I am really frustrated by the thought of spending the rest of my life on a gluten free diet. My GP and the G.I. doctor that performed the biopsy to confirm celiac really were not that helpful. They basically handed me some general info that is readily available on the internet and suggested I see a dietitian. I am really debating whether to go gluten free or not. I cannot find any good statistics relating to silent celiac disease and what is the probability of having complications or symptoms sometime in the next 5 to 10 years. The science behind silent celiac disease seems weak and it is hard to tell whether someone will ever have any significant symptoms or complications. It seems everyone with celiac is lumped together regardless of degree of symptoms. Although "gluten free" diets are quite trendy these days, celiac disease research and treatment seems like it is in the dark ages. Anyone know where I could find some credible research on silent celiac disease.

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Hi

Sorry for the diagnosis, especially since you weren't looking for one.I was diagnosed in September with blood test and biopsy. I ONLY started getting symptoms in February which were horrible neuropathy and depression with some weight loss. I am very tall and not skinny, no reason to believe that there was anything wrong with me before Feb.and my diagnosis was a total fluke in ruling out stuff, one of the things they tried to rule out was celiac! I saw a host of specalists and none of them could believe the weird symptoms I had ( i mean, absolutely NO stomach problems) and basically said to call a dietician and good luck, see ya. However, my GI suspects I have had this a LONG time. Too bad I didn't get diagnosed sooner, I am still really suffering from when this all came crashing down in Feb.

Just because you have no symptoms now does not mean that you will be that way forever...My advice? Ditch the gluten. Everyone is different and we can't tell you how long it will take to get sick or what will happen but you are still doing damage to your body every time you ingest gluten. Your body is attacking itself.

I know it isn't what you wanted to hear :(

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Hi Recently diagnosed with silent celiac disease on a fluke screening for anemia (which was later discovered to be primarily associated with an ovarian cyst.) Basically, I have no noticeable symptoms of celiac that I would run to the doctor for a cure. I am really frustrated by the thought of spending the rest of my life on a gluten free diet. My GP and the G.I. doctor that performed the biopsy to confirm celiac really were not that helpful. They basically handed me some general info that is readily available on the internet and suggested I see a dietitian. I am really debating whether to go gluten free or not. I cannot find any good statistics relating to silent celiac disease and what is the probability of having complications or symptoms sometime in the next 5 to 10 years. The science behind silent celiac disease seems weak and it is hard to tell whether someone will ever have any significant symptoms or complications. It seems everyone with celiac is lumped together regardless of degree of symptoms. Although "gluten free" diets are quite trendy these days, celiac disease research and treatment seems like it is in the dark ages. Anyone know where I could find some credible research on silent celiac disease.

you mean "silent" as in asymptomatic right? if you tested positive- it is still ACTIVE even tho its silent. please stay on this forum and soak everything in-> there is a wealth of information on here- and plenty of reasons why you should go gluten free even tho you are not suffering stomach wise.

Celiac disease can cause so so so so so much more than stomach pain- it can lead to intestinal lymphoma, stomach cancer, neuropathy, dementia, etc....

depending on what other genes you have-> Gluten can also trigger additional Autoimmune Diseases including Diabetes type 1, Autoimmune Liver Disease, Lupus, MS, Psoriatic Arthritis, Crohns, etc...

it is extremely common for one to develop more than 1 autoimmune disease. i have also been dx with Hashimoto's Thyroiditis... and im hoping the Autoimmune festival stops with those 2 for me.

please go gluten free- and know that you are actually in the majority of those with Celiac (5/6 of Celiacs reportedly have no stomach issues). it WILL lead to other health issues if you continue to eat it- you already had the anemia. consider yourself blessed and lucky to have gotten the diagnosis :) so you could get a head start on your health

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There was an article last year in Gastroenterology that made the lay press. If I remember correctly, the authors used blood samples from people who lived on an airforce base 50 years ago. They found that Celiac disease is more common now than it was 50 years ago. They also found that those with undiagnosed celiac disease (therefore eating gluten) were 4 times more likely to die an untimely death than those without celiac disease. I looked up the citation for you -Gastroenterology; July 2009 137(1); pp373-374. That's the only one I know of off the top of my head. Of course, anemia, osteoporosis, decreased night vision, infertility, intestinal lymphoma, seizures, peripheral neuropathy, gluten ataxia, and other autoimmune diseases as well. From personal experience, like so many others with Celiac, I also have "silent" Celiac disease. By the time I found out I had it I already had developed ulcerative colitis and autoimmune hepatitis. As an adult I don't think the gluten free diet is difficult to follow. As someone who ate a lot of gluten, I honestly don't miss any foods. At first it seems overwhelming but I got used to it pretty quickly. You'd be surprised how many delicious gluten free foods are out there. As a mom of two girls, if either of them develop Celiac disease, " silent" or not, I'll definitely put them on a gluten free diet because I'd hate for them to develop any health problems just because they ate gluten. Good luck to you.

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You've received excellent information and advice above, and I also believe that it's in your best interest to go gluten free. At first, you'll grieve for some favorite foods, but then you'll begin to enjoy the diet (which is very healthful) and find it easy. I no longer miss any particular food, especially since gluten-free versions are available.

I would venture to guess that after you've been on the diet for six months or longer, you'll have some type of negative reaction to eating gluten. For many of us, the longer we go without gluten, the more sensitive we become to even the smallest amount of cross-contamination. Because you're not sure if you wish to follow a gluten-free diet, I would strongly recommend that you try it for at least six months and then eat a small amount of gluten. I think you'll have your answer then. For many of us, the disease was "silent" until, all of a sudden, we began having terrible symptoms--some of those symptoms can remain for life even on a gluten-free diet. Why take that chance? Count yourself as extremely fortunate that your doctors caught this before you lost your health. Probably 99% of the people on this forum wish they'd had such a lucky encounter with a doctor before the symptoms began. You are so VERY fortunate--please don't throw away the precious gift of health you've been given by your alert doctors.

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Thanks all for taking the time to respond. Celiac disease is quite perplexing. With a huge range of symptoms and issues. I share a lot of common issues with others, such as Hashimoto's thyroiditis, anemia, tendonitis that comes and goes,..but I still run about 5 miles a day, play indoor soccer once or twice a week, have a full time job, 3 kids and generally feel happy and healthy. I feel badly for all the people on this blog who suffer so much from celiac disease and went so many years without a diagnosis. A six month test of the gluten free seems like a reasonable approach. But, one more night one gluten. So Starting Jan. 1, 2011 I will see how it goes.

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I hope that going gluten free will persuade you to continue to do so.

I think you are very right in thinking the celiac research is in the dark ages - or more that it is only in the beginning stages. No drugs for the disease means no money from drug companies for research, so it's a slow, slow process. Although from the research I've seen?

I think one of the problems with silent celiac disease is that some of the problems from this disease only show up when it's too late. And some of them can cause life long pain and disability. From the personal front, I can offer up anecdotal evidence, anyway.

My father - a silent celiac - was very physically active, every day. Big, muscular, healthy man. Then in the span of about 5 years, his body just started falling apart. Increasing depresion. His joints deteriorated, the discs in his spine deteriorated, he developed arthritis in his spine, damage to his lungs.

None of this is reversible, and none of it was detected until there was no way to repair the damage, whether he went gluten free then or not. He has a cane, he has an inhaler, and he has lots and lots of pain pills now, for the rest of his life.

Me? I was also a silent celiac. I had similar problems with my back, although not as severe, because it was caught earlier and I went off gluten. However, another issue that I had, which is a problem for silent celiacs, is that whether you notice it or not, a celiac has a slightly lowered immune system. And as such, you are more vulnerable to certain complications with certain diseases. I caught a disease that usually stays in the lungs and is gone within a month or two. Instead, it escaped my lungs, invaded my muscles, and laid me out bedridden for nearly a year. It will remain in my body for the rest of my life, as a result, and can resurge at any time.

Again...there's nothing to be done about this until it's too late to fix.

At the time, undiagnosed, I remember the doctors scratching their heads and saying: we don't understand it. You never see the disease do this except in people with lowered immune systems. It's very strange.

I know that going gluten free sounds like it sucks, but...well, actually, here. You might want to check this out:

http://glutenfreeworks.com/gluten-disorders/celiac-disease/symptom-guide/

These are a list of lots of the symptoms of celiac disease, many of them the ones that silent celiacs have. My daughter was also a silent celiac, and I've been stunned by how many of the mental and emotional symptoms she actually had, that disappeared on the proper diet. I always thought they were just how she was made. You might find something similar in yourself. Perhaps not, but the next 6 months might show you something new.

Either way, I hope it works our for you. And I hope that last gluten free meal was AWESOME. :D

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I don't have any GI issues- I just get a pain in my left side from time to time- never have stomach aches/diarrhea/constipation/etc. I am shocked that gluten can be causing so much damage, but my GI Dr showed me the pics from the biopsy and my intestines are really bad. So, the damage is being done even if you have no symptoms and that is scary to me. Being gluten-free isn't that bad. I have actually lost weight and have more energy (I run a lot too). I have been eating much healthier- more whole foods and less processed.

Good Luck!

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Shauna,

Could you tell me which disease or virus you are referencing? Thank you.

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Shauna,

Could you tell me which disease or virus you are referencing? Thank you.

Valley Fever. The official name is Coccidioidomycosis - I developed disseminated coccidioidomycosis. I was pretty darn lucky, actually, because my body slowly managed to overcome the fungus for the most part for the few years before I was diagnosed with celiac disease and my body finally managed to get as healthy as it's going to.

There's an organization that discusses it, here:

http://www.valley-fever.org/valley_fever_valley_fever_org_background.html

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    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • 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. 
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