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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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DutchGirl

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Sorry, did you think you were chatting with someone who is/was sane? B)

With time comes experience. I have not brought any gluten into the house, except pet food. (fish food) It is handled like poison.

My daughter was diagnosed with Eosinophilic Esophagitus (related to Celiac, but an utter mystery). One of the common theories to the mystery is to blame a too clean environment. (don't get all freaked out and crazy but vaccines are a possible suspect for not allowing kids to get sick with "childhood viruses")

So I have become more relaxed about cleaning. Maybe too relaxed. <_<

Wow, how scary about your daughter! I hate the whole vaccine thing, I feel like I'm scared to vaccinate and I'm scared not to. The H1N1 Vaccine killed more people than the H1N1 virus itself.

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One of the best books to read is Celiac Disease: A Hidden Epidemic by Dr. Peter Green. He is one the leading researchers/physicians specializing in Celiac Disease and his advice is spot on. It's also a great tutorial on how this disease works and if you don't learn that, you'll never get the diet right. I highly recommend it.

One of the things talked about in this book is DH and how skin contact with gluten containing foods or products will not cause a DH outbreak. DH is the skin version of Celiac and works the same.....you have to ingest gluten for an outbreak to occur. However, most people with DH have very sensitive skin to begin with and other ingredients in products can irritate your skin or you may have an additional skin allergy to wheat or another ingredient in products. Not every outbreak or reaction is gluten based. You can choose to use gluten-free products if that is more comfortable for you but it may not be entirely necessary all of the time.

I could see where it might be easier to just stick to all gluten-free products if you do have DH.

Read the book....it's very interesting and you'll learn a lot of useful information.

I will definitely pick up the book!! Thank you for the recommendation! I have DH on my scalp and I worry that the gluten will do harm by entering in through the sores?! I also have a itchy gross rash in and between my eyebrows but since I've stopped wearing my makeup that contains gluten, it's getting better. So maybe I have an allergy as well as celiac.

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I almost died when I had chickenpox. I was three years old but I remember it as if it were yesterday. So weak, such a high fever, and so much pain. Plus, those who have had chickenpox are at much greater risk of shingles in adulthood.

 

I agree that kids are overvaccinated these days, but chickenpox is one that I think is good. Measles too. That's another one that has killed quite a few kids.

That's so scary! Chickenpox seems so harmless until you hear stories like these! My step Mom had Mumps as a child and it left her deaf in one ear.

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That's so scary! Chickenpox seems so harmless until you hear stories like these! My step Mom had Mumps as a child and it left her deaf in one ear.

My sister and I had measles together.  I missed two months my first year in high school.  My sister was hilarious - she had delirium and we used to have the wildest conversations :lol:  - couldn't ever talk to her about them later though :rolleyes:

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I will definitely pick up the book!! Thank you for the recommendation! I have DH on my scalp and I worry that the gluten will do harm by entering in through the sores?! I also have a itchy gross rash in and between my eyebrows but since I've stopped wearing my makeup that contains gluten, it's getting better. So maybe I have an allergy as well as celiac.

DH takes a long time to go away, unfortunately. It is explained in the book, better than I can do. I think if your scalp and skin are that irritated, it might be a good idea to use a very gentle shampoo and cleanser that is gluten-free, something without perfumes/scent.  Keep it simple until the DH is under control. Sorry to hear you are having such a hard time but with patience, you will get this under control.

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I almost died when I had chickenpox. I was three years old but I remember it as if it were yesterday. So weak, such a high fever, and so much pain. Plus, those who have had chickenpox are at much greater risk of shingles in adulthood.

 

I agree that kids are overvaccinated these days, but chickenpox is one that I think is good. Measles too. That's another one that has killed quite a few kids.

         I think the number of kids that die from chicken pox today is pretty low. That's extremely rare and we have better medicine to help if things get out of control.

 

I had them and it was just another childhood illness.  I also had shingles once but I knew what it was, went immediately to the walk in clinic and was put on anti-virals right away and it was not that bad.  Nearly dying of Celiac was far worse.  Not everyone develops shingles either...that medical scare is overblown, like everything else.  Kids get way too many vaccines today....they need to pick and chose the ones that apply to each situation.  It just seems odd that with all the vaccines, kids are sicker today than when I was young.  No one had food allergies when I was in school and diabetes was rare.  It makes you wonder if the assault on a kids immune system today does something bad in the long run.

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From the case files of some of the chickenpox deaths, its seems there was extreme OVERmedication.  The patient was given more drugs that need to processed by the liver, when the liver is needed to process the virus.  So the patient "died from chickenpox"  but IMO the patient died because of liver failure.  My opinion was partly formed from Reye's syndrome.

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Eosinophilic Esophagitus is the modern medical mystery.  (I am a bit bitter paying for specialist that can only say "just don't know".  *Something* just triggers the production of eosinophils to be produced and the nasty white blood cells just damage everything.  Fortunately we have narrowed down some of the food triggers (have suspects for the airborne triggers as there is a seasonal "flare".)  Gluten is the "trigger" for some patients, so we have quite a few EE patients here.  The connection was finally noticed by the medical community and newly diagnosed EE patients should be screened for Celiac.

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I think one of the reasons kids get sick more often today is that they don't play in the dirt. They are using anti-bacterial soaps. They are living in a more sterile environment and their immune systems don't get to build up strength. I know that is why you believe we should let our kids get these childhood diseases, but I guess it depends on the individual child. I was born sick and almost died several times. I had pneumonia several times as an infant and more as a child. (I even had it a few times when I was in my 20's - one time so bad that I needed to be hospitalized.) Mom said measles almost killed me too but I don't remember measles. I had croup, I got bronchitis at least twice each winter, I had scarlet fever, I was a mess!

 

I grew up to be pretty healthy though except for celiac and a touch of asthma. :)

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where is crystal deodorant sold.  I was diagnosed last March and am trying to wrap my head around all of the toiletries......where to find them and what ingredients to stay away from with it doesn't specify wheat, rye etc. if gluten free is not identified on the item.

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1 hour ago, Rosalind said:

where is crystal deodorant sold.  I was diagnosed last March and am trying to wrap my head around all of the toiletries......where to find them and what ingredients to stay away from with it doesn't specify wheat, rye etc. if gluten free is not identified on the item.

Most toiletry products are fine even if they have wheat/gluten in them.  The main issue is not to ingest them!  Many folks with celiac disease are careful with shampoo, conditioner, soap, lotion, lipstick, lip gloss, hair products,  and sunscreen because they could be accidentally swallowed (if you chew on your nails, etc.).  

I have used Crystal Deodorant for 20 years now.  It can last for years!  Seriously!  It is pretty effective but not as effective for a teenager.   My entire family uses it, but my teen uses regular antiperspirant too.  You can find it at Whole Foods, Sprouts, healthfood stores, and even a "roll" on version at CVS.  Of course, Amazon carries it too and the price is comparable to the stores.   I found some mini travel versions at Marshalls (but that is hit or miss).  I like the solid crystal option the best. 

I really like Gabriel Lipstick found at Sprouts.  I buy it on sale.  It is certified gluten-free, so I never have to worry!  I hear that Red Apple (sold online) is very good too and is certified.  

I hope this helps!  

Edited by cyclinglady
typo

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1 hour ago, Rosalind said:

where is crystal deodorant sold.  I was diagnosed last March and am trying to wrap my head around all of the toiletries......where to find them and what ingredients to stay away from with it doesn't specify wheat, rye etc. if gluten free is not identified on the item.

I never worry about deodorant.  The only things you really need to worry about are things that might get in your mouth.  I get shampoo in my mouth so I read the ingredients.  They will say if they have wheat germ oil in them. 

 

http://www.cureceliacdisease.org/archives/faq/will-my-skin-breakout-if-i-use-topical-products-like-shampooslotions-that-have-gluten-in-them

 

"Gluten must be ingested to be cause for concern for someone with celiac disease.

We still recommend those with celiac disease avoid contact with gluten, especially with products that have the potential to be ingested. Small amounts of gluten can be found in many cosmetics, lotions and shampoos. Avoid product ingredients that literally say “wheat,” “rye,” “malt” or “barley.”  "

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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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