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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

The Specific Carbohydrate Diet
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I'm somewhat new to this forum and was diagnosed with Celiac about 3 months ago. I've been doing everything to comply with a gluten free diet, but I still don't feel significantly better. I'm still having skin issues, neurological issues (hot or tingling sensation in arms/legs, migraines), weight issues, and suffer from either severe constipation or "D". I know everyone says it takes time, but I'm not myself and I feel uncomfortable on a daily basis. I still feel like I have that swollen belly most of the time and none of my clothes fit. I'm extremely lethargic and have little to no energy to even exercise. I gained 30 pounds from being on prednisone for a prolonged period of time because I was breaking out in severe hives before being diagnosed. I've lost some of the weight, but the last 12-15 pounds don't seem to want to come off. I constantly feel FAMISHED ... as if I haven't eaten in days. I've been trying to educate myself on the specific carbohydrate diet b/c I've read that many have been successful with it. I don't quite understand everything about it and would love some more information. I'm planning to purchase "Breaking the Vicious Cycle" by Elaine Gottschall to get more insight, but I'd love to hear about anyone's personal experience with this diet. For example: What they ate on it? (a sample diet would be great) How long they were on it before they saw results? (did they lose/gain weight?) Did it make them feel better, worse or the same? Did you have more energy?

Any information would be greatly appreciated. Also, has anyone heard of Peter H.R. Green, MD at Colombia University? I live in NY and have been trying to get an appointment with this man. From what I hear he is the guru for Celiac Disease.

Thanks in advance for your help!

Gluten Girl42

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I purchased the book and read it cover to cover. All I have to say is WOW. I plan to start the Specific Carbohydrate soon, but I'm still reading up on it, doing research and want to get all supplies I need before starting it. From what I have been reading, if your body somewhat responds to the diet within the first month or so... patients with celiac diesase can be CURED for life if they follow the diet. When i finally do it I'll post again. Anyone with questions, insight etc. please contact me. Thanks.

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Peter Green wrote a great book about Celiac Disease (Celiac Disease: a hidden epidemic).

From everything I've heard, it would be great to get an appointment with him.

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Hi Gluten Girl,

Yes, the diet works. I've been on it (on and off) for about 4 years, and am totally medicine free and symptom free.

As being diagnosed with Colitis, I had awful flare ups and was on about 30 pills a day and nothing seemed to work.

After about 4 years, the disease progressed to the point where it was hard to go to work. I was bleeding every time I had a bowel movement, and was weak and depressed.

I always thought diet had an impact - I mean why wouldn't it? I asked my Gastroenterologist if diet had any affect and he said "absolutely not".

I believed him for many years until it got to the point I was desperate for help. I mean it was so bad I was contemplating having my colon removed. How bad could life be without a colon? It had to be better than what I was going through. I made an appointment with my doctor to make arrangements for the surgery and was told the next appointment was a month from then.

In total frustration with the inability of the medicine to control the symptoms and feeling hopeless that even the doctor couldn't help me anymore, I decided to Google "diet" and "colitis" and SCD was the first thing I found.

So I tried it.

Within a week, I felt better.

Within a month I knew it was helping.

Within 2 months my gut was feeling much better and I was on my way to recovery.

Within 6 months I was medicine free, and within a year I was symptom free.

Of course, I canceled the appointment to have my colon removed and now after so many years, I am trying to help other people avoid having the surgery if they can avoid it.

I just discovered this forum, and that's why I'm putting my story here. Hopefully you will try the diet and find relief like I have.

By the way, this works for people on Celiac's, with Colitis, or other IBDs.

The SCD diet is a little more strict than just Gluten-Free.

I would recommend reading the book "breaking the vicious cycle" as a good start.

You can always ask me for help along the way if you get stuck. I'm glad to help.

Take care and let me know how you are doing.

-Tim

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We do GAPS which is based in the Specific Carbohydrate Diet. It has a slower intro and a few differences, including more of a focus on probiotic foods. It has made a serious difference in my neurological issues, as well as all sorts of other things for me and the family.

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ps, when people say "cured" of celiac disease I am wary. This does not mean getting to eat gluten later! While my celiac son is cured of all his symptoms on the GAPS diet, he is not able to eat gluten!!! Many food intolerances are gone now... IgG reactions tend to be a symptom of a leaky gut. When the gut is "sealed" those reactions no longer happen. However, if you reintroduce foods and habits that CAUSED the problem of a leaky gut and flora imbalance in the first place, you will end up right back where you started.

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ps, when people say "cured" of celiac disease I am wary. This does not mean getting to eat gluten later! While my celiac son is cured of all his symptoms on the GAPS diet, he is not able to eat gluten!!! Many food intolerances are gone now... IgG reactions tend to be a symptom of a leaky gut. When the gut is "sealed" those reactions no longer happen. However, if you reintroduce foods and habits that CAUSED the problem of a leaky gut and flora imbalance in the first place, you will end up right back where you started.

I recently heard about GAPS diet. From what I'm told it's a more advanced SCD that people do afer they were on SCD. I've also heard conflicting things about the "cured" .. some have said that after being on SCD 1-2 years if they have shown positive results within the first month or so that they have been healed and able to eat whatever they wanted after. Who knows... I guess it's safe to say that everyone is different. I'm hopeful my life will improve once on the diet. I shall keep you posted.

Thanks for your responses.

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ps, when people say "cured" of celiac disease I am wary. This does not mean getting to eat gluten later! While my celiac son is cured of all his symptoms on the GAPS diet, he is not able to eat gluten!!! Many food intolerances are gone now... IgG reactions tend to be a symptom of a leaky gut. When the gut is "sealed" those reactions no longer happen. However, if you reintroduce foods and habits that CAUSED the problem of a leaky gut and flora imbalance in the first place, you will end up right back where you started.

I agree that "cured" is a short cited view of the outcome that can be associated with the SCD diet. That's why I say " symptom-free". I've been symptom-free for about 4 years now on the SCD diet. There were a couple flare-ups along the way - which was my fault for getting off the diet when I thought I was "cured".

The biggest problem with this diet that I can see is that people get over confident and start to revert back to the diet that got them sick in the first place.

However I have found that having illegal foods once in a while while following the SCD diet most of the time has led to a long symptom-free period and a diet that I have got used to.

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I recently heard about GAPS diet. From what I'm told it's a more advanced SCD that people do afer they were on SCD. I've also heard conflicting things about the "cured" .. some have said that after being on SCD 1-2 years if they have shown positive results within the first month or so that they have been healed and able to eat whatever they wanted after. Who knows... I guess it's safe to say that everyone is different. I'm hopeful my life will improve once on the diet. I shall keep you posted.

Thanks for your responses.

Hi GG,

I've also heard of the GAPS diet, but never had a need to try it because the SCD diet works fine for me.

Also, I'm not sure people who experience relief on the SCD diet can go back to their former "Americanized" diet and not have the same issues they had previous to going onto the SCD diet. Everyone I know (including me) who tried it got a false sense of security and over did it. After a short period of going back to the illegal foods a major flare up would force them back to the SCD diet. And sometimes the road back to the SCD diet can be harder the second (or third) time.

It's just prudent to go slow once you are symptom-free if you want to reintroduce certain foods back into your diet.

-Tim

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Reba32    41

I just took a cursory look at their website, and it seems to be sort of the same as the Paleo diet. Whole, natural, and biologically compatible foods for our body.

Personally, I started on the Atkins diet in 2008, and that's how I found out I had Celiac disease. The first phases of Atkins you totally eliminate all grains, and I felt sooooooo much better, that I did some investigating and self-diagnosed Celiac. Then did a (very painful) gluten challenge to get the definitive dx from the gastroenterologist.

Whether Atkins/Paleo/Specific Carbohydrate, eating whole natural foods, instead of manufactured frakenfoods, is a better eating plan, whichever one you follow.

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Reba32    41

I did lose weight on Atkins, and continue following the plan in "life time maintenance". It is a life style change, not just a weight loss regimen. It took me a while, but I lost about 30 pounds. Of course I had the regular Celiac hurdles of malnutrition and malabsorption to contend with. I avoided the Atkins manufactured foods, because they are not gluten free, and I stuck with pretty much a whole natural foods diet. Which is what Dr. Atkins intended in the first place, but modern dieters prefer to have packaged convenience foods, so they've added some for those who want them. The plan works with our without them. Personally, I think it works better without them.

They released a new book last year "the New Atkins for a New You", it's a little easier to follow than earlier releases.

I've recently been looking quite a lot at the Paleo plan, which stays away from grains and manufactured foods, beans, and dairy. Dairy is debatable though, as fermented products like cheese and yogurt go back several centuries, just not as far back as paleolithic times. Some include it, others don't. In all food choices, fat is included though. Fat is good for us, and needed for the body to metabolize vitamins A,D,E and K.

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AVR1962    88

GlutenGirl, hang in there! I have been on a gluten-free diet for a year, tough first year for me....while I was getting better there was just still strange things happening repeatedly. I had really cleaned up my diet, my kitchen, changed all my health care products. I finally 3 weeks ago went grain free including potatoes, sugar free including fruit right now......I have 25% nerve damage in my feet, have had pins and needles between my toes for year and all of that is nearly gone now, I am only getting it occasionally. My memory has improved, nausea gone, I have more energy and in general feel all-over better. So far, cross my fingers, nothing yet has popped up.

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benXX    1

I just took a cursory look at their website, and it seems to be sort of the same as the Paleo diet. Whole, natural, and biologically compatible foods for our body.

The big difference between SCD & Paleo is dairy.

I started on SCD when I had parasites partying in my belly, being dairy intolerant, I got tired of reading about cheese, yoghurt and pro-biotics from milk bacteria. Then I found out I was actualy doing the Paleo diet.

Anyway, it helped. Lost the parasites in 4 months.

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mamacat    0

Some people have posted that being "cured" by SCD actually just means being symptom free and you still have to stay off gluten. Others make it sounds like you an go back to gluten or eat whatever you want after SCD. I have a hard time believing that people can go back to eating gluten after they've done the SCD.

My question is: Is there any evidence or personal experiences that people have not only gone back to gluten after SCD, but have had another endoscopy to prove there is no more damage caused by celiac from eating gluten after SCD? Even if people feel like they're being cured and eat gluten after SCD, that doesn't mean the gut damage still isn't happening. Any info to back up these claims would be greatly appreciated. Thanks!

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kareng    1,992

Some people have posted that being "cured" by SCD actually just means being symptom free and you still have to stay off gluten. Others make it sounds like you an go back to gluten or eat whatever you want after SCD. I have a hard time believing that people can go back to eating gluten after they've done the SCD.

My question is: Is there any evidence or personal experiences that people have not only gone back to gluten after SCD, but have had another endoscopy to prove there is no more damage caused by celiac from eating gluten after SCD? Even if people feel like they're being cured and eat gluten after SCD, that doesn't mean the gut damage still isn't happening. Any info to back up these claims would be greatly appreciated. Thanks!

I don't think any of these posters said they are cured of Celiac. They are " symptom free" or the diet helped them heal. They aren't saying they can eat gluten with no issues.

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mamacat    0

I don't think any of these posters said they are cured of Celiac. They are " symptom free" or the diet helped them heal. They aren't saying they can eat gluten with no issues.

TimothyWelch said you could try to slowly reintroduce old foods after the diet but it didn't work for most people introducing it too fast. Glutengirl42 also mentioned she heard some claiming to eat anything after SCD. I've heard that too so thats why im questioning it b/c I have yet to see any evidence that shows you can go back to gluten. I want to know if that's true or just rumor.

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kareng    1,992

TimothyWelch said you could try to slowly reintroduce old foods after the diet but it didn't work for most people introducing it too fast. Glutengirl42 also mentioned she heard some claiming to eat anything after SCD. I've heard that too so thats why im questioning it b/c I have yet to see any evidence that shows you can go back to gluten. I want to know if that's true or just rumor.

I think Timothy does not have Celiac, he had colitis. I belive they also meant things like grains, dairy, whatever isn't on that diet but a Celiac can have.

I'm not going to argue with you. i don't think you can find any evidence that the SCD diet would cure an autoimmune disease. Not a reputable source, anyway..

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