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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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TeresaAnn

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Hi There...

I was just diagnosed this week with Celiac Disease. I've had symptoms for years...but recently the Celiac Blood Testing panel came back positive. I am also suffering from an EXTREME Vitamin B12 deficiency...I've been on the shots for about 6 months and not much relief so I'm hoping the new Gluten Free Diet will change that.

My Dr. is also restricting me from Dairy and sugar for the first 3 mos of the diet then I can gradually add them back. I seriously cannot wait to start feeling better. My pancreas is not doing well at this point and I'm hoping the diet change will speed up the healing process. Did anyone else experience any malfunction with vital organs before being diagnosed and how long before I can expect to feel at least somewhat better?

I'm pretty over whelmed right now. Oh...I'm a Pastry Chef so this is going to be a challenge. However...I'm going to make it my goal to creat new and delicious breads, pastries and desserts that are Gluten Free!

Thanks a bunch...

Teresa

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Hi There...

I was just diagnosed this week with Celiac Disease. I've had symptoms for years...but recently the Celiac Blood Testing panel came back positive. I am also suffering from an EXTREME Vitamin B12 deficiency...I've been on the shots for about 6 months and not much relief so I'm hoping the new Gluten Free Diet will change that.

My Dr. is also restricting me from Dairy and sugar for the first 3 mos of the diet then I can gradually add them back. I seriously cannot wait to start feeling better. My pancreas is not doing well at this point and I'm hoping the diet change will speed up the healing process. Did anyone else experience any malfunction with vital organs before being diagnosed and how long before I can expect to feel at least somewhat better?

I'm pretty over whelmed right now. Oh...I'm a Pastry Chef so this is going to be a challenge. However...I'm going to make it my goal to creat new and delicious breads, pastries and desserts that are Gluten Free!

Thanks a bunch...

Teresa

Bless your little pastry creme filled heart, Teresa, and welcome to the world of the Celiac! :D You could end up becoming a

millionaire if you develop some great gluten-free goodies for the rest of us! You have a wonderful attitude. If you follow the diet strictly, you'll heal so don't worry. The rest of us on this board are here to help.

Healing is individual for everyone and it depends on many factors. I hope you are not working with regular wheat flour in your job because that's going to be a problem if you inhale it on a regular basis. That will keep you from healing well.

I was deathly ill when diagnosed and might not have made it. I was diagnosed just in time and I healed well...it did take about 3 years total for all symptoms and problems to disappear, though, so be patient. You can turn everything around, for the most part, so don't despair. You seem to have a positive attitude so that will help tremendously! Any questions, ask away....

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Hi there and welcome!

First, everyone varies as far as recovery goes. The first few weeks (if not months) can be tough because most go through a type of detox. Many of us have issues like sub-optimal hormone levels, liver congestion, etc. Proper diet and supplamentation is key and it sounds like your doc is on it.

One big caution for you, if you still bake with glutenous products make sure you take precautions like a face mask and gloves. Some Celiacs become quite ill from inhaling (and swallowing) workplace gluten.

Best of luck and welcome!

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Hi there and welcome!

First, everyone varies as far as recovery goes. The first few weeks (if not months) can be tough because most go through a type of detox. Many of us have issues like sub-optimal hormone levels, liver congestion, etc. Proper diet and supplamentation is key and it sounds like your doc is on it.

One big caution for you, if you still bake with glutenous products make sure you take precautions like a face mask and gloves. Some Celiacs become quite ill from inhaling (and swallowing) workplace gluten.

Best of luck and welcome!

Yes...I'm going to have to figure out the best way to work around my ingredients...but I must say...since I have my own commercial bakery kitchen in my house...I may just decide this is the avenue I am taking and completely change to being the best provider of gluten free wedding cakes, bread and other pastires. I live in a small coastal town so there is NOTHING to choose from for people who have Celiac or just want to eat gluten free. We have a really great health food store in the next town up...I spent a couple hours there today. The owner is also Celiac and was super helpful. I'm going to detox my kitchen and myself. :) My husband said he's on board...our kids are teens...that could be a challenge...but If I don't buy them poisen...they can't eat it, right? I guess they can at school and out of the house...but they eat what I make for them and for the most part we eat organic and healthy anyway...so it will all be ok.

I am going to stay really positive and I am greatful and thankful that I don't have something that I can't work around. My husband gave me a hug and said, "It's not cancer....or watergate." lol...I guess he's right. :)

Thanks so much for the uplifting messages. I'm going to use this site to the fullest! <3

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Glad that you can make gluten-free foods if you want to with your job - that's awesome!

In that venue, I should mention a food that will make you a goddess among celiacs, if you can create some good ones: gluten-free versions of Girl Scout cookies. Seriously - people will bow down for this one. :lol:

Seriously

Re: your teens. Now that you have been diagnosed, it's recommended that all blood relatives 1 degree separated be tested as well, even without symptoms, because silent celiac disease will cause lots of problems but give a sufferer no warning until organs start to give out, like you experienced.

So your siblings, parents, and children should be tested, if you can pester 'em enough. Their chances of having celiac disease change from the generic 1 in 133 to 1 in 22, now that you've been diagnosed.

My father was diagnosed 10 years ago, and we didn't know this. 8 years later, as I was getting sicker and sicker, I got tested and came back positive. Then we tested everyone and my daughter and brother both have it, too. Son has symptoms that go away on a gluten free diet, even though he tested negative. So it can really make a big difference.

And you're absolutely right - this is SO much better than other things we could have. It's the only auto-immune disease in existence where we actually know what makes it stop attacking us (gluten, obviously). Compared to all the others we could have, this is so much better.

Re: organs having trouble and coming back. I didn't have organ trouble, I had glands acting up. My thyroid was getting worse and worse. Gluten free 2 years now and it's completely normal now. I just found out a couple weeks ago and did a little happy dance. :D

I hope your own happy dance is just as energetic and fun.

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Exactly. Don't buy gluten and they can't have it at home. I'm sure you'll create lots of great gluten-free baked goods, etc. to replace them. And teens can always get a fix when they are out.

I'm sure you'll have lots of interested munchers and customers. gluten-free bakeries are rare and I hope you become one more.

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You asked about problems with vital organs? Are you having any issues with organs now?

I have a teen at home and it is not an issue. Both she and my husband like the gluten-free foods I have made. I do still wheat flour in the house and my teenager might make a batch of cookies for her and her dad so we all have to be careful. I line of muffin pan, cover the butcher block with waxed paper if I use it for my stuff, use napkins on the counter tops and I do not use wooden spoons for anything I cook for myself.

I think it would be great if you could get your own little gluten-free business going! Good luck to you!!

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Hello and welcome :) It's rather ironic for a pastry chef to be celiac, but how fabulous that you'll be experimenting with gluten free baking!

You sound like you have such a positive attitude towards being celiac, which will help in your journey tremendously!

I second getting your teens tested. With celiac you just never know.

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Thank you all for the awesome responses! We have talked to the Dr.about tests for the kids and they will be getting those. I also notified my siblings. My sisters were more positive and accepting the possibility. Both of my brothers are digging in their heels. They have great wives so I am hoping that they will come around. I am thinking about doing a little baking class for kids with celiac. A friend of mine has a daughter who has Asperger's Syndrome and can't have gluten...she would love it. Maybe there was a reason for my diagnosis. I'm really ok with it. :)

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My fave gluten free flour is coconut flour. It's a bit spendy, but it makes awesome cupcakes and I even managed a pie crust with it :) I've also used (certified gluten free) oat flour with great success as well. There are sooooo many options for gluten free baking, experiment with more than just the usual rice or potato flours :)

One way to keep your expenses down is to buy yourself a grain mill and use it to mill your own flours. Buy whole oats, (certified gluten free oats of course!) rice, beans and nuts in bulk, and then grind them. It'll save about half your $. Gluten free flours are very costly!

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I have been noticing the cost of gluten free flours are high. Does anyone have a favorite vendor that sells it in bulk?

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I have been noticing the cost of gluten free flours are high. Does anyone have a favorite vendor that sells it in bulk?

If you are looking for quinoa, you can get on-line and buy in bulk from Ancient Harvest, although you have to hunt a bit to find it on their on-line ordering area. It's not that much cheaper, though.

A lot of companies will sell in bulk if you check on their websites. Bob's Red Mill sells bigger bags of their flours, for example. I believe Pamela's does, too.

(Company Name Removed - They Spammed This Forum and are Banned) can be a place to look too (I know, I had no idea!).

Azurestandard has a lot of products you can buy in bulk. Also, if you can find the folks in your area who are ordering, many band together and make a joint 'drop point,' which lowers the cost significantly, I understand.

http://www.azurestandard.com/

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you can also buy packages of whole seeds, nuts, beans, or gluten free grains and grind/mill them at home in a spice mill or food processor. This can save you quite a bit of money. Almond flour can be as much as $15 per pound, but a bulk bag of almonds at Costco is a lot less, and then you can grind them at home. With nuts I usually end up with more of a meal than a flour, but it does work!

I just bought myself a grain mill so I can get finer flours at home. I'm waiting for it to be delivered, and then I will start some marathon baking! ;)

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One note.

If you start baking to sell, you will get a lot if questions about your ingredients sources. You're going to find gluten-free people are VERY picky.

So, stick with reputable and traceable sources, and tell people what they are. You'd rather have someone say "oh, I can't eat Bob's Red Mill mix", rather than "I ate her cake

and got so sick, I don't know what she put in it but she

doesn't know what she's doing".

And don't put oats in your main flour mix, even gluten-free certified. You won't gave many takers. Only put oats in a

few things.

And if you are using equipment you used to make gluten foods - you're going to have to clean it with a fine-toothed comb. And even then you'll notice some people asking how long the facility has been gluten-free, and if you're using your old equipment, etc.

If you're just cooking for yourself - have fun!

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Great point! Since I have a commercial Kitchen licensed by the FDA I have to list all ingredients when I sell to the public so this won't be hard...but on top of that...I too am very picky now as to what goes in my mouth...so totally understandable.

I made a wonderful cheese cake this weekend for my son's birthday. I made the crust with just finely chopped walnuts, brown sugar and cinnamon and a little butter...baked it off first and then baked my cheese cake on top of it. It was wonderful!!

Thanks so much for all the great ideas! :)

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One note.

If you start baking to sell, you will get a lot if questions about your ingredients sources. You're going to find gluten-free people are VERY picky.

I kind of disagree ,, I dont think I am picky as much as I am careful.

It has been a very VERY long hard road to know what I can and can not eat to stay well. I will not risk my health for a piece of bread.

I do agree that I would ask ALOT of questions about your kitchen,suppler, baking practices before I would consider buying your products .

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Totally understandable. I am completely removing all gluten products from my home....even my children and husband have agreed. They can eat gluten outside of our home.

My kitchen is extremely clean and I am very particular about what ingredients I buy...gluten or not. I would never sell someone something I myself would not want to be served. That being said...it's totally up to each individual what they purchase.

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Great point! Since I have a commercial Kitchen licensed by the FDA I have to list all ingredients when I sell to the public so this won't be hard...but on top of that...I too am very icky now as to what goes in my mouth...so totally understandable.

I made a wonderful cheese cake this weekend for my son's birthday. I made the crust with just finely chopped walnuts, brown sugar and cinnamon and a little butter...baked it off first and then baked my cheese cake on top of it. It was wonderful!!

Thanks so much for all the great ideas! :)

To be honest a list of ingredients would not be enough for me to buy gluten free product from you . I would also want to know the source of your baking supplys. Cross contamination is a major issue with some baking supplys so I would what to know if those ingredients were manufactured at a shared facility,or on shared lines, or in a gluten free facility.

and of course my next question would be,, do you deliver in Northwestern Pa.? :)

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How did this topic become weather or not people would buy from me? It's starting to sound a little negative.

I just came here to learn about my new diagnosis and I did mention that I am a Pastry Chef ...and this will give me a new focus for my baking. No one here has to buy from me. Really. My feelings will not be hurt.

My Dr's Wife has Celiac and he personally asked me in the past if I would try baking bread for her that tastes good...I think it's a good place to start. I'll bake for myself and others that know me....know my style...and my kitchen.

I understand your points...I do...but right now my real focus is not on baking for others...but finding out what I can create and how I can learn to eat this way for a lifetime.

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How did this topic become weather or not people would buy from me? It's starting to sound a little negative.

I just came here to learn about my new diagnosis and I did mention that I am a Pastry Chef ...and this will give me a new focus for my baking. No one here has to buy from me. Really. My feelings will not be hurt.

My Dr's Wife has Celiac and he personally asked me in the past if I would try baking bread for her that tastes good...I think it's a good place to start. I'll bake for myself and others that know me....know my style...and my kitchen.

I understand your points...I do...but right now my real focus is not on baking for others...but finding out what I can create and how I can learn to eat this way for a lifetime.

I apologize if I sound negative that was not my intention.

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I think it's neat that you are a pastry chef. Now you can have fun experimenting! I think you will find a lot of great tips and information in this forum. I've only been gluten-free for about a month now and it's thanks to this forum and it's members that I've had an easier transition!

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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?    
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