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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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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4 posts in this topic

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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    • Yes I made it  Welcome Lakme, you've found a great community and resource and I'm sure myself and Ennis won't be the only ones that recognise elements of our own experiences in your account.  In addition to the links Ennis sent you above and the stickied forum faq, I tried putting down some info that may be useful to people just realising they may have an issue with gluten, you can find it in this thread:    Reading your account you do tick a lot of the boxes and perhaps you have found the underlying cause. As that thread explains however, we can't diagnose you, if you want answers you'll need to be eating gluten in order for the tests to work. I know this is probably the last thing you want at the moment, but do read the thread and think about it. You're young and that diagnosis could prove useful for a number of reasons in the years ahead. The longer you leave it, the more of a challenge the gluten challenge may prove.  Out of interest how long since you started on the diet and have you noticed any change in symptoms? You may want to consider keeping a journal, it can be very difficult to track the neuro type symptoms in particular, a written account helps you do that and tracking progress can help with anxiety issues and depression too. I get these too. It's not formally diagnosed, like you I had a physical exam of the eye which failed to show anything, but I believe it to be optic neuritis. It's vastly improved since my diet change, as has an awful lot of other stuff.  So if you're celiac or non celiac gluten sensitive you will hopefully see similar improvements in the weeks, months and even years ahead.  I wish you the best of luck.  Matt
    • Lenbh- I was diagnosed last year and I have wondered that very question. Not too long ago (before kids) I traveled quite a bit. The idea of traveling now with celiac is a bit overwhelming.  I am pretty strict at home to avoid gluten and almost never eat in situations where CC is even possible- and as far as I can tell, I don't really get any symptoms of glutening.   I have definitely heard that it is easy to travel to Ireland with celiac. In fact, many restaurants have 2 menus - a regular and a coeliac. They often cook the food in a separate kitchen as well.  I can't wait to take my kids to Italy and am already thinking "how in the world will that ever work???" I have decided so far that I will do my best, not knowingly eat gluten, and try to buy food in stores or eat in "safe" restaurants -but understand that the more often I eat in restaurants, the more likely it is to be exposed to gluten. I guess it's just a risk I'm willing to take every once in a while so that I can explore the world with my kids.  And, yes, Gelato! At least twice a day while in Italy...:)
    • They do not work for prevention, they might help with getting over the gut pains. But will not stop the antibody reaction, or the damage. At $100+ a bottle your better off investing in Nima or EZ gluten strips and testing foods.   Other thoughts for quick alternatives. They sell microwave cookers out of plastic and silicon for eggs, bacon, etc. Might be worth getting and doing dishes that way. Steam bags and fresh veggies also to avoid pans and pots that could have issues. I been looking at MRE type stuff allergen friendly myself for trips and emergency's. Things get expensive at $6-7 a meal compared to bars or shakes.
    • I would not use these as prevention, but maybe they would help a post-glutening.  In my case, I travel with lactose tablets and digestive enzymes.    When glutened, I become lactose intolerant again.    Would hate to miss out on some gelato.  Do not forget any meds you normally take too.  
    • Thanks for the help! I didn't know Bacardi was gluten-free; that's a great option. 
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