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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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I'm planning on starting the specific carbohydrate diet soon....The SCD diet is based off of Elaine Gottschall's book Breaking the Vicious Cycle. It cuts out grains, sugars, processed foods and many other foods that cause problems. It is a very strict diet and needs 100% adherence, but I've heard testimonies of so many people healing their intestines because they followed it so closely.

Perhaps you were thinking about starting the SCD diet, too, because the gluten free diet just isn't cutting it. If so, I would love to have an accountability partner to keep each other accountable (and who knows, there may be others!). This is my second time around and I want to follow it 100% right this time. I'm making a committment to try it for 90 days. If that's you too, let me know, and let's get healthy together!! :)

I'm committed to seeing huge results after 90 days. It's going to be hard but worth it.

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I'm planning on starting the specific carbohydrate diet soon....The SCD diet is based off of Elaine Gottschall's book Breaking the Vicious Cycle. It cuts out grains, sugars, processed foods and many other foods that cause problems. It is a very strict diet and needs 100% adherence, but I've heard testimonies of so many people healing their intestines because they followed it so closely.

Perhaps you were thinking about starting the SCD diet, too, because the gluten free diet just isn't cutting it. If so, I would love to have an accountability partner to keep each other accountable (and who knows, there may be others!). This is my second time around and I want to follow it 100% right this time. I'm making a committment to try it for 90 days. If that's you too, let me know, and let's get healthy together!! :)

I'm committed to seeing huge results after 90 days. It's going to be hard but worth it.

I have also been looking into the SCD diet. I keep hearing about how going gluten-free will stop the symptoms, but really won't help heal my damaged stomach. The only problem is that I was overweight to start out with, then when I went gluten-free crazy eating everything gluten-free in sight I gained at least another 20, not watching carb intake at all. Now I'm on Medifast gluten-free, have lost 20 but have another 20 to go. I am feeling wonderful, what symptoms I did have are gone. But not ready to give up my Medifast yet, but kudos to you, I hope it shows some healing progress for you. Good luck!
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I just bought BTVC, based on a post I read elsewhere on this forum. Last year, my oldest son was diagnosed with Celiac and, as a result, the rest of the family was tested, It turned out the me and one other son also had it. Now, we had no symptoms, not really things you would notice. But, my oldest is very small for his age. We thought nothing of it because both me and my husband were also the same way growing up. But, his sister took her daughter to the endocrinologist about growth issues and it turns out her oldest has a lack of growth hormone.

Long story short, we found out that my youngest son also has growth hormone deficiency. And, that's how we found out my oldest had Celiac, because that is one of the many blood panels they ran.

Now, after a year of being gluten-free, he hasn't really grown. And, despite following a strict gluten-free diet, completely revamping the kitchen, and everyone in the family following the diet, his levels are STILL in the positive range. He started around 150, I think, and we just had another test and it came back at 95 *(ttg IgA). This is after a year of eating gluten-free. The gastroenterologist's nurse was saying he must be cheating, etc. But, that's a load of bull because I know my son, and he's very careful about "the rules," no matter what it pertains to. And, he checks every label, takes his lunch to school etc etc. We were racking our brains but then I read somewhere that if your DGP comes back negative (which his has been for some time) that means that, yes, you are NOT ingesting gluten. But, having a positive ttg IgA means that you aren't fully healed.

We were just happy to see that the levels continue to drop, so we know we are on the right track. But, I had been wondering if just maybe somewhere he was ingesting a small amount of gluten.

However, when I got and read BTVC, I was floored! This completely sounded like my son. In that, it was very possible that his insides weren't healing because he was still eating other starches. He LOVES his popcorn, chips, pirates booty, anything carb.

So, we are seriously contemplating doing this diet. The ironic thing is that I don't do a lot of baking, etc. If we have treats, they are Glutino or Udi's gluten-free premade. But, I went whole hog and bought a bunch of Betty Crocker gluten-free mixes to make over the holidays. Turns out I didn't need them because my MIL made a ton of gluten-free cookies. (I'm wondering if I can return the mixes to the store????).

What I gather from reading the book is that, once his intestines are healed, since he wasn't having intestinal issues, like diarrhea and bleeding, after his levels drop, it would be OK for him to have the occassional gluten-free grain. Which, I think he would like. It just seems like so much more overwhelming than even going gluten-free did. No more popping to the pizza place to order gluten-free pizza for dinner. No more ice cream treats or hot chocolate, etc.

And, having to make my own yogurt sounds tough. However, I do like how one can make "ice cream" from it. And baking with almond flour sounds interesting.

I just have to talk to my son about this to convince him. I hope this will be the key to bringing his levels down to negative AND help with his growth. The endocrinologist put him through a bunch of testing again this year to try and help explain why he's STILL not growing. And, he did fail a growth stim test. But, his levels for other things are falling in low normal range. So, insurance will probably deny him growth hormones (although we will fight). $1700 a month for that medicine is too much for us. But, is he doomed to be tiny his whole life??

If we start, it will be within one to two weeks. I want to buy some almond flour and try out some recipes. And, then there's the committment to buying the yogurt maker and making the yogurt, which sounds really hard.

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So sorry I am just now seeing your post! I'm sorry to hear about your son. You can't eat any better foods than the whole foods. That's really encouraging that he has no symptoms. Actually, the yogurt is really easy to make. I ordered my yogurt maker from http://www.lucyskitchenshop.com/ . Make sure you ask for the SCD yogurt starter. They send the directions and everything. I make mine with 1/2 and 1/2 and it is delicious with sweetened with honey and even some fruit.

I hope it goes well! It's encouraging that he has no symptoms on just the gluten-free diet. It can't do anything but help. It definitely won't hurt.

I just bought BTVC, based on a post I read elsewhere on this forum. Last year, my oldest son was diagnosed with Celiac and, as a result, the rest of the family was tested, It turned out the me and one other son also had it. Now, we had no symptoms, not really things you would notice. But, my oldest is very small for his age. We thought nothing of it because both me and my husband were also the same way growing up. But, his sister took her daughter to the endocrinologist about growth issues and it turns out her oldest has a lack of growth hormone.

Long story short, we found out that my youngest son also has growth hormone deficiency. And, that's how we found out my oldest had Celiac, because that is one of the many blood panels they ran.

Now, after a year of being gluten-free, he hasn't really grown. And, despite following a strict gluten-free diet, completely revamping the kitchen, and everyone in the family following the diet, his levels are STILL in the positive range. He started around 150, I think, and we just had another test and it came back at 95 *(ttg IgA). This is after a year of eating gluten-free. The gastroenterologist's nurse was saying he must be cheating, etc. But, that's a load of bull because I know my son, and he's very careful about "the rules," no matter what it pertains to. And, he checks every label, takes his lunch to school etc etc. We were racking our brains but then I read somewhere that if your DGP comes back negative (which his has been for some time) that means that, yes, you are NOT ingesting gluten. But, having a positive ttg IgA means that you aren't fully healed.

We were just happy to see that the levels continue to drop, so we know we are on the right track. But, I had been wondering if just maybe somewhere he was ingesting a small amount of gluten.

However, when I got and read BTVC, I was floored! This completely sounded like my son. In that, it was very possible that his insides weren't healing because he was still eating other starches. He LOVES his popcorn, chips, pirates booty, anything carb.

So, we are seriously contemplating doing this diet. The ironic thing is that I don't do a lot of baking, etc. If we have treats, they are Glutino or Udi's gluten-free premade. But, I went whole hog and bought a bunch of Betty Crocker gluten-free mixes to make over the holidays. Turns out I didn't need them because my MIL made a ton of gluten-free cookies. (I'm wondering if I can return the mixes to the store????).

What I gather from reading the book is that, once his intestines are healed, since he wasn't having intestinal issues, like diarrhea and bleeding, after his levels drop, it would be OK for him to have the occassional gluten-free grain. Which, I think he would like. It just seems like so much more overwhelming than even going gluten-free did. No more popping to the pizza place to order gluten-free pizza for dinner. No more ice cream treats or hot chocolate, etc.

And, having to make my own yogurt sounds tough. However, I do like how one can make "ice cream" from it. And baking with almond flour sounds interesting.

I just have to talk to my son about this to convince him. I hope this will be the key to bringing his levels down to negative AND help with his growth. The endocrinologist put him through a bunch of testing again this year to try and help explain why he's STILL not growing. And, he did fail a growth stim test. But, his levels for other things are falling in low normal range. So, insurance will probably deny him growth hormones (although we will fight). $1700 a month for that medicine is too much for us. But, is he doomed to be tiny his whole life??

If we start, it will be within one to two weeks. I want to buy some almond flour and try out some recipes. And, then there's the committment to buying the yogurt maker and making the yogurt, which sounds really hard.

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    • One other thought to consider is other food allergies/intolerances you may have that you didn’t know of before that could be causing this change.  Is there any food that you may have added in or increased the frequency of eating since removing gluten from your diet?  I know this has happened with me where I took our gluten, started eating more rice and still getting sick till I figured out I have a rice allergy as well!
    • Hey I’m new here too- but totally get what your talking about! I have some friends that claim to be ‘gluten free’ but if they are hungry will eat a piece of bread and it can be frustrating to have them later complain to you about how hard it is to eat a gluten-free diet!
    • I get how you feel, I was diagnosed almost 5 years ago and still find challenges to overcome especially when traveling with my friends.  I get the feeling that sometimes it can seem to overshadow your life, but for me it has really shown me who some of my closest friends are as well.   My friends always find it funny and joke that I eat my way thru school classes, because I ALWAYS have ‘me proof’ snacks on me to eat so I’m never hungry when I’m away from home for longer than I thought, or can’t get food while we’re on the go!!
    • Sure, you should consider getting tested for celiac disease.  There is no test for Non-Celiac Gluten Intolerance or Sensivity.  However, you have to be consuming gluten daily for at least 12 weeks as ALL celiac tests require you to be consuming gluten.   Learn more about testing: http://www.cureceliacdisease.org/screening/
    • Welcome Isabel!   It is hard having celiac disease, but after a while it does get easier.  Just so you know, I am an adult, but I am a Girl Scout Leader, have a daughter who is 16 and one of my daughter’s friends was just diagnosed with celiac disease just three weeks ago!   Social events can be hard, but you can bring some food that is actually better than just snacks.  If I am going to a friends house, I can bring food and reheat it in the microwave.  I also have a good thermos that I can fill with Spaghetti, chili or soup.  I also bring ice cream and keep it in the freezer.  One of our troop members is really allergic  to nuts and milk, yet all her friends (true friends) accommodate her.  For example, I make some pretty good gluten free, dairy free, and nut free brownies for her.  At our troop meetings or camping, we never bring nuts.  She is never left out.  Now, we are working with our Newbie celiac friend.   My daughter and I took her a care package, so that she can start baking gluten-free chocolate chip cookies.   Short!  That is me.  Not everyone with celiac disease is short.  You may find that you end up growing more, but remember, genetics plays into it too.  My brother grew after high school!   I think that you probably see your doctor often, because they want to insure that you are following the gluten free diet.  Consider yourself lucky because some people do not have access to medical care.  They must manage this all on their own.   Take care and be safe!  Do not give out too much private information (did I say I was a Mom?”)  be patient and some other teens should show up in the other sections, but you can always ask anyone here a question.   P.S. Check out celiac summer camps.  Google it.  Imagine a ton of kids just like you!    I wanna go!    
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