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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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Article in Thursday's San Jose Mercury News

Cracking the code: Genetics reshapes medicine

When food turns toxic

ILLNESS MAKES EVERYDAY GROCERY ITEMS OFF-LIMITS

By April Lynch

Mercury News

Hungry and tired after a high school tennis match, Kelly McKenna raids the family kitchen. Her little sister, Laura, pulls out a few snacks, combing through a pantry designed just for the two girls.

In this stash of teenage-friendly food, there are no everyday crackers, commonplace cookies or most of the wheat-filled fare found in American cupboards. The pasta is made from rice flour, as is the brownie mix. The sisters grab a bag of corn chips and dig into a bowl of guacamole.

Kelly and Laura choose their food specifically for their bodies because they know what's in their genes. The girls have celiac disease, a genetic digestive illness that turns wheat and other grains into a gut-destroying poison.

By letting genetic knowledge guide their meals, the sisters avoid pain, anemia and malnutrition. As gene-based medicine develops, more people will be able to join Kelly and Laura in crafting their best possible personal diet.

This blend of genetics and food, known as nutritional genomics or nutrigenomics, is gradually changing everything from shopping habits to heart disease research. ``You are what you eat'' is evolving into ``eat for who you are.''

Food-related conditions as common as lactose intolerance start in the genes, scientists have learned, and can be treated by controlling what a person eats. In other cases, food choices can trigger genetic responses that flare into high cholesterol, cancer or other serious illnesses.

Personalized plans

Ultimately, scientists hope to give people their own personalized food pyramids, steering them toward an individual menu plan for their health.

``This can help us design better drugs, better nutrition, and understand diseases better,'' said Wasyl Malyj, co-principal of a leading U.S. nutrigenomic research center at the University of California-Davis. ``We'll be able to tune our nutrition in ways we can't right now.''

Until the emergence of gene-based medicine, nutrition rarely got such sophisticated scrutiny. Dietary advice usually comes in very general terms -- calcium from dairy products is good, lots of fat is bad, sugar is unhealthy.

But genetic research has revealed plenty of exceptions to those rules. Lactose intolerance, a gene-based condition, requires many people to look beyond milk to get calcium. Some people, genetically prone to cholesterol trouble, suffer more from the effects of dietary fat. In people prone to diabetes, sugar isn't just unhealthy -- it can be deadly.

In researching celiac disease, scientists have uncovered how genes turn some of the world's most common foods into poison.

Celiac patients carry at least one gene that leaves their bodies unable to tolerate gluten, a protein in wheat, rye and barley. Gluten is found in everything from bread and soy sauce to bottled salad dressings and candy.

Some people with celiac genes may never have a problem. But in others, the immune system mistakenly identifies gluten as an intruder and attacks it in ways that damage the lining of the small intestine.

The intestinal damage limits the body's ability to absorb nutrients and often causes painful abdominal bloating. Patients with the condition, also called celiac sprue, usually lose weight. Their hair can fall out. Many are thin, anemic and perpetually tired. If not diagnosed, celiac disease can eventually stunt growth, weaken bones or trigger cancer.

Kelly, 17, who lives in Woodside, discovered her condition in November after a long bout of unexplained illness. She was so thin and anemic that her doctors asked whether she was anorexic.

``They talked to me like it was all in my head,'' Kelly said. ``I knew it was real.''

After her mother, Molly, did her own research on Kelly's symptoms and pushed for celiac disease tests, Laura was tested and diagnosed as well.

``I would out-eat my dad, but I was still this big,'' said Laura, 13, holding out a slender pinkie finger. ``They'd wonder where it was all going.''

Discoveries

Researchers are using their understanding of the genetic underpinnings of celiac disease to develop treatments. In the process, they say, they are also uncovering wider links between genes and nutrition.

``We are learning some very interesting and important things about the interplay between genetics, nutrition and health,'' said Chaitan Khosla, a chemistry professor at Stanford University who started doing celiac research when his wife and son were diagnosed with the condition.

He heads the Palo Alto-based Celiac Sprue Research Foundation, which is researching a celiac disease treatment. While there is currently no way to fix the genes that drive celiac disease, the foundation is getting ready to start tests on a pill that would help celiac patients tolerate gluten.

``I have become a lot more tuned in to things that used to just fly by me before,'' Khosla said. ``When someone tells me her daughter can't tolerate strawberries, and neither can she, I don't dismiss it the way I used to. I ask lots of questions, wanting to know more.''

At UC-Davis, doctors and scientists are already looking beyond individual nutritional diseases.

The university's nutrigenomics center, a combined effort among UC-Davis, federal scientists and researchers from Children's Hospital Oakland Research Institute, is funded by $6.5 million in federal grants. Racial differences in genes, diet and health form a key focus of the group's work. The center is also probing broader genetic factors linked to some of the country's most common health problems, such as heart disease and high cholesterol.

Millions of Americans have high cholesterol, but not everyone develops it the same way. Scientists already know that some people's cholesterol shoots up if they eat certain types of fat. Dr. Ronald Krauss, an East Bay scientist and cholesterol specialist affiliated with the center, is studying another genetic type -- people with cholesterol problems triggered by a low-fat, high-carbohydrate diet.

Krauss emphasizes that this trait isn't found in everyone, and he doesn't push wide use of the low-carbohydrate diets so popular in recent years. What his findings do make clear, he said, is that there is no one correct cholesterol-limiting diet for everybody.

``No one should expect all individuals to respond in a given way to any set of dietary recommendations,'' Krauss said. ``That expectation is a thing of the past.''

But neither, he said, should people expect to hear about genomics from their nutritionist in the near future. What people are more likely to see in their doctor's office is a growing range of genetic tests that can pinpoint specific nutrition-related diseases.

Getting tested

New genetic tests are available for lactose intolerance and celiac disease. Doctors who specialize in intestinal illness say they are especially interested in the celiac test, as the condition can be difficult to diagnose.

The condition is believed to affect as many as one out of every 150 people -- about 2 million Americans in all. For reasons doctors still don't understand, it can flare up suddenly in people who never had symptoms before.

To get a solid diagnosis, most patients have to undergo blood tests and intestinal biopsies. If a diagnosis is positive, relatives then need testing. Some are turning to genetic screening to try to avoid a biopsy of their own. The genetic test, which uses a blood sample, looks for genetic variations found in almost all celiac patients.

If relatives of a celiac patient don't have the variation, they will rarely develop celiac disease. Those with the variation need further testing and monitoring.

The test, offered by San Diego-based Prometheus Laboratories, costs $440. Results take about four days. Insurance sometimes covers it, Prometheus spokeswoman Beth Kriegel said.

The test has limits. A celiac gene is no guarantee a person will develop the disease. For now, that leaves genetics as just one part of pinpointing the illness and choosing a healthy diet.

``With some of these tests, you have to be careful how you interpret the results,'' said Dr. Eric Sibley, a pediatric gastrointestinal doctor and researcher at Lucile Salter Packard Children's Hospital at Stanford. ``You may not want to drop something from your diet just because of one genetic test.''

Still, those wondering about their genes and food welcome any glimpse into the code that shapes them. As a precaution, Kelly and Laura's younger brother, Michael, will undergo the celiac genetic test.

``He has been fine,'' their mother, Molly, said. ``But it would be good to know more.''

The girls, in the meantime, say they are happy to follow their genes when they eat. They miss pizza. But they have learned to scrutinize food labels and cookbooks. Kelly has created videos to educate medical students about celiac disease. The sisters have ready answers for people who misunderstand their careful choices and ask whether they aren't too young to count carbs.

And they eat well, knowing that the food they reach for truly blends with their bodies.

``I was so sick before,'' said Kelly, digging into a salad topped with cheese and olives. ``I'm so happy to know that this works. It would be cool for everyone to know this much.''

------------------------------------------------------------------------

Contact April Lynch at alynch@mercurynews.com or (408) 920-5539

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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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