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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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celiac3270

The Celiac Conference At Columbia 4-2-05

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I just got back too,

It was really good, I ate a lot as celiac3270 knows :) but there were some really good talks and it was really interesting, I took some notes, but I have to get up at 4:45 tomorrow to catch a flight home so I am going to sleep early and I will try to post them when I get home

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What do you mean by "8-ppppp"? I did write out 32 pgs. in a notepad, so it will take awhile to type out. Ugg...

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I just got back too,

It was really good, I ate a lot as celiac3270 knows :) but there were some really good talks and it was really interesting, I took some notes, but I have to get up at 4:45 tomorrow to catch a flight home so I am going to sleep early and I will try to post them when I get home

:lol: ...yep...the talks were fascinating...the teen cooking class...left much to be desired lol :lol: And about eating...haha...I thought I was eating a lot until you told me what you had had :D

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That's a "raspberry" to cpu problems! Look at it as eyes (8), nose (-), and tongue (pppp)!

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Oooooohhh, if that was me, I would be going:

:angry: @#$#@%&*&%#@$#$#$#$$#*(!!!!!!!!!!!!!!! :angry:

Karen :D

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I would be doing the same thing :angry: But, I can hardly wait to see what celiac3270 has to say! :D

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I know! :angry: It's so frustrating and it always happens when I type long posts (not the short ones that I don't care about <_< ). It's too frustrating to write the same thing twice...and I'm too tired right now -_-

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Ok celiac3270:

Get some sleep, sweet dreams.

Sally

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The following talks were given. The ones I went to are in bold, except for the last one in bold, which my mom took a few notes on for me:

Celiac Disease Primer (Dr. Green)

Whole Foods Shopping Wise (Janet Lasky)

Let's Get Real About the Gluten Free Diet! (Dr. Levy)

Serologic Diagnosis (Vijay Kumar)

Amazing Grains (Anne Lee)

Research Leading to Therapies (Dr. Green)

I didn't go to the Whole Foods one because I would have had to skip Dr. Green's Primer or go to the Primer later in the day and miss Anne Lee's talk. Besides which, I haven't been to either of the Whole Foods in NY yet, so I don't really need that information...yet.

I also went to a teen cooking class in the afternoon...but there isn't too much to say about that. We made pizza using a mix from the gluten free pantry. It was't bad at all, but I prefer Chebe and the Gluten Free Pantry mix took forever to make and was messy. It was one of those where you had the mix, yet you still needed to add eggs, water, oil, yeast, salt, etc...then let the yeast rise and then make it into a crust and then add the sauce and the toppings.... On the other hand, with Chebe, which I like better, anyway, it's much quicker and with fewer ingredients.

To really summarize each discussion (since there was so much said at each): Dr. Green's Primer was fascinating. He basically covered everything except for information about reading labels and such. He discussed celiac awareness in the US and why it isn't very well-known here despite so many people having it. He discussed what happens to the small intestine, how symptoms relate to GI damage, and he showed pictures of normal and destroyed villi. He discussed that man wasn't meant to eat wheat, the genetic tree of grasses, genetic factors of celiac, how to best prevent celiac disease, prevalence, why it's undiagnosed, the pathophysiology of celiac disease, how to test, a graph of what symptoms people had had that he had diagnosed, explained silent and classical celiac disease, some strange celiac symptoms that were being researched, related disorders, the clinical spectrum of Celiacs, antibodies, management, etc. You can see why it would've taken me forever to type it all up! :o

Dr. Levy discussed coping with the gluten-free diet--it's really about when people are diagnosed, so it didn't really apply to me. He explained that it's not easy, that there are 4 reactions people have to diagnosis, how to manage the news, how to confront the challenge, how to begin the diet, where you'll need to plan ahead, how to deal with it, primarily for kids, travel tips, etc.

Anne Lee discussed ingredients, coping, grains and how to use them, cross-contamination, and much of the session was spent with people asking questions and others (or Anne Lee herself) answering them.

In Dr. Green's second talk (alternate therapies) he discussed the video capsule study with the pill endoscopy, alternate therapies to a gluten-free Diet (what they're researching), and he asked for money for Columbia to research :lol: . He also discussed celiac centers in Maryland, Chicago, etc.

If anyone has questions about a specific thing, I'll type all my notes on it (such as...how best to prevent celiac disease) and send it to them. PM me or e-mail me.

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celiac3270,

Thanks for your infor - my daughter attended also, took notes and called me with the facts. She was thoroughly impressed with Dr. Green and even asked one question about me! She convinced me to make an appointment with him (or one of his associates) to deal with my stomach problems. He talked about enzymes (which he prescribes) and how he doesn't agree with acid reducers (which my Dr. gave me). I told her to look for you, but no luck! She went to the 12:30 talk. She also ate a lot of gluten-free goodies.

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Guest gliX

Thanks for the info celiac3270. What did they discuss about alternate therapies? (such as the pill)

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They're researching 6 things:

  • Genetically modified wheat
  • Induce tolerance to gluten (the way breast feeding does)
  • Oral peptidases (an enzyme that digests the gliadin--THE PILL)
  • Block tTG
  • Block binding to the DQ groove
  • Block cytolcines

Bklyn, what question did she ask? I might remember her :D

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Guest gliX

Did they mention the possibility of a cure anytime soon?

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A cure--no. But Dr. Green expects there will be a pill to help deal with accidental contamination in the next 10 years.

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Guest Viola

Something to deal with accidental contamination would be something, especially when one is traveling. Dealing with it at home is one thing, but on the road is really hard. :huh:

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That sounded like a really fun conference! Thanks for taking notes for us!

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Sure :). I still haven't typed them up--they're still in my notebook. But if you're interested in any one area, I'll get that portion for you :D . About six or seven people have e-mailed so far.

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It was such a fun conference, my mom is typing up my notes to hand out to the rest of our support group in california and I will post them here later, All the talks I went to were really interesting, coping and amazing grains because we were just a little late (say 1.5 hours) ans missed the Whole Foods one which I really wanted to go to, but I did visit their booth multiple times. The teen cooking was also really fun, but I ate way too much even for my body...which is saying something :) but overall the conference was an amazing hit and I am working to get the Stanford one here next year to have a cooking porting which would be really fun because I think that the hands on was fun, even though it was just a bit messy :)

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Hi Molly:

What part of California do you live in?

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I live in Stanford California near San Francisco

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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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