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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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    • Very interesting. However, my positive on the DGP test is on the combined assay. When separated into IGA and IGG they are within normal range. Twice the IGA was a point or two above normal range, which can be easily disregarded per University of Chicago.  Much of the research done on NCGS is showing activation of cells which are different then in celiac. Placing it still in a gluten related illness spectrum, but an entirely different kind of mode of transport, if you will, then celiac disease. Odd, because I am pretty sure I read that 1st degree relatives of celiacs have a higher prevalence of NCGS suggesting it is, in part, that they are related. But I cannot recall where I read that.  I think my specialist doc is following the right track given that all of this began at the tail end of a 6 week challenge in 2015/16 and I have an increase in IELs.  which, as I've stated before, is a very non-specific finding however. Symptoms continued On a gluten free diet for me months after.  however I was only on it for that 3 months after they found some inflammation. So maybe I didn't give it long enough.  Or like I said, maybe it's something else. We shall see! 
    • Thank you for your replies, everyone! It was very helpful. I don't think I am comfortable with passing the whole gluten introduction diet again and getting that rash. Or, even getting the rash on my face flared up again. It actually might be a good thing I got 'glutened' at that bd party so I could finally make connection with all the symptoms. As I thought back about my 'allergy' rashes I start wondering if it could be related to gluten all those years but no one even suspected. For example, at some point I started getting itchy rash around my knees, spreading down to ankles (front of the legs) in summer. The dermatologist and GP said it is 'sun allergy'. The usual allergic treatments helped for the itch and the patchy scales slowly healed but it flared up on the same place during the summer multiple times. The strange thing is that it never flared up when I went hiking, or walking in the sun in the city (I have extremely low vit D levels and I need to supplement, so it was no-no to stay completely covered no matter the rash...I needed my natural vit D). The rash only appeared after beach visits. At some point I started washing and drying my skin with a towel every time I went out from the sea, the rash still appeared but I was able to control it so it showed up on day 4-5 when vacation was almost over. Then, last summer after I was completely gluten and dairy free for approximately 9-10 months, and I was annoyed of washing my skin each and every time and getting those weird looks on the beach, I stopped doing it. I was prepared with medicine and creams for that rash but guess what - my 'sun allergy' was mysteriously gone. Not a single blister, not a patch of itchy skin, nothing. Another 'allergy' case of mine is that I found from my own bad experience I got very bad rash from red dyes (in food or cosmetics). If it is food it shows on my face, if it is cosmetics (soaps, perfumes)...whenever I applied it. I am now reading that people with dh should stay away from red dyes. Mere coincidence? I don't know, I am more and more suspicious I could have this DH thing going on for years, if that is DH. I am just annoyed that all the dermatologists I went to during all those years never made connection. No one even suspected. It was the usual path - cortisone creams, pills, etc. At some point cortisone creams were no longer working so they started prescribing some mixtures made in the pharmacy specifically for me with sulfur. That worked like a charm but I couldn't walk around all covered in white cream looking like a mummy (long sleeves in summer here where I live and summer = 35-38 C, is not fun). Then, I tried homeopathy....it worked like a charm but of course those rashes kept appearing and disappearing, I was only able to control the itchy skin so I don't scratch, scratch, scratch...looong, long journey! Sorry about my rant...and, one more time thank you everyone who found the time to reply and share your opinion! Much appreciated!
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    • Actually "flour" is not a common ingredient in soy sauce.   Accusing a manufacturer of "lying" about ingredients is a serious charge.  If you actually have proof that this company is not listing ingredients, you should report it to the FDA.
    • Ok guys, I messed up. I ate a bag of marshmallows the same day... low and behold, with wheat starch. I did not expect that. Sneaky sneaky marshmallows with with wheat starch. fml
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