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Scd Book On Celiac
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Hey all, so I've been trying to keep up with the SCD posts and finally bought the book-''breaking the vicious cycle" for myself to read as an option... But I was surprised as I read her controversial thoughts on Celiac and how she disagreed with the current theory for the cause of Celiac and treatment. Those of you who are familiar with what I'm talking about--What do you think of that? And if you use the book, do you stick to the diet and just omit her theory of Celiac? Just curious :)

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I'm one of those that thinks that particular theory of celiac and the SCD approach is misleading and DANGEROUS. When I read thru that book I was horrified at what was being said about Celiac and that it can be cured by the SCD and that one with Celiac COULD consume gluten after successfully completing the necessary steps of the diet. My thought was WTH is this person thinking? This is inaccurate, and dangerous misinformation to be putting out there. There are a lot of ill people really getting into this diet and believing this and IMHO it's downright scary. it goes to show you that anyone can put out a book with any theory and get published. Doesn't mean it's right. Doesn't mean it's medically accurate either.

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When I read thru that book I was horrified at what was being said about Celiac and that it can be cured by the SCD and that one with Celiac COULD consume gluten after successfully completing the necessary steps of the diet.
That really bothered me too. I've read most of the book since it was recommended by a family member. She leads people to believe that the gluten-free diet cures celiac disease. Last I checked there is no cure for celiac disease and if she knows the cure then why isn't it more publized? Personally, I think she is using the word "cure" in the wrong way. I think, or I hope, she means that the SCD make celiacs feel 100% better, which is great. But using the word "cure" like that will mislead a lot of people and potentially lead people to believe that they can eat gluten again. I have nothing aganist the SCD diet and I know that it helps a lot of people, but I just don't like that the author claims that it cures celiac disease.
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IMHO SCD is just another fad diet like Atkins and such. The fact that the author claims it "CURES" all these illnesses really gets my goat.

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Yeah, I'm always like 'well, if your theory is so right and the current theory is wrong, then why isn't everyone talking about yours? There seems to be something to the diet that does help heal some individuals, but yes, not 'cure.' Hmmm... Thanks for the thoughts!

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I read the book and am following the diet. BUT, I do not agree with everything she wrote (obviously), but I do believe that the diet does help. I have had a lot of change and benefits since going on the SCD. But, if you buy into her theories, it could lead to major problems. When I read a book, like this one, I take out the good and throw away the bad. The diet can help if you take it for what it is... a way to clean out and heal ~ not cure.

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I believe the book is meant primarily for those whose symptoms don't respond to a gluten-free diet (and for those with other problems, like IBD). I disagree that it's a fad diet - it's actually one of the original diets to treat celiac disease. The discovery of gluten as the culprit in celiac disease came later through additional research. I think Elaine's use of the word "cure" is referring to an alleviation of symptoms. If you look at the context of that chapter, Elaine is referring to different experimental diets and their effect on reducing diarrhea and other symptoms. The last paragraph refers to the SCD giving celiac sufferers the opportunity to become healthy. I don't see where it says you can go back to eating whatever you want.

I also think that much more research needs to be done on celiac disease and other intestinal disorders to gain a better understanding of what we should and shouldn't be eating for optimal health. How many people on this board are still struggling with health issues? I wouldn't have sought an alternative diet if I wasn't miserable on a gluten-free diet.

Elaine also mentions that flattened villi are reported in cases of other intestinal conditions such as ulcerative colitis, parasitic infections - celiac disease is not the only cause of a damaged gut. The question that I had when I read the book is "Could my celiac disease be a misdiagnosis of some other condition?" Since my bloodwork has always been borderline normal (it didn't change after going gluten-free), I'm continuing to pursue an answer to why my body seems to reject food.

For those of you who feel great on a gluten-free diet - great! For those of you who don't, I would urge you to continue to be inquisitive about your health.

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I believe the book is meant primarily for those whose symptoms don't respond to a gluten-free

Hello all,

I have read the book , and being a new celiac of only several months have not finished healing. even though I call all manufactures on products I use in my home , I was still having problems feeling well after the first few months of going gluten-free.

I have read several books, I then make up my mind on what seems likely to help me , my health is in my hands, even my doctor ,sorry to say ,has only limited knowledge of this disease.

what I got from the book was I need to heal and complex carbs and added sugars in many of the gluten-free baked goods arent helping me at this time. and after years of not knowing what was wrong , I have leaky gut and many allergies.

this is an easier way for me to weed out what they are , I will reintroduce the grains back at a later date one at a time and watch and keep a food log.

In no way did I take this book's diet to mean I would be cured of celiac disease, only that giving my body less to break down would help my healing . and with time I may again enjoy some of the higher carbs and sweets I once did only now gluten-free.

rosie NY state

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I think her diet is terrific but her conclusions aren't.

When I went off gluten and dairy I actually got worse. But following her diet I think I'm finally getting better. I don't believe her diet cures food intolerances, but it sure is good for recovering from GI woes.

One thing I noticed is she says you can never go back to eating grains and refined starches again like you did before. Perhaps what happens is the intestines are better able to handle the stress of the food intolerance but if you kept it up, you'd just end up very sick again.

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I'm glad, Nancy, that you are doing well on the diet. I find that I feel SO much better when I follow the SCD. I allow myself to go off (over Christmas) for a treat, but then go back on. How can I argue against it when I feel so well when I follow it?? Good luck following the SCD and feeling better! :)

P.S. And all my #'s are better after going on it as well ~ my Dr. was very happy. :)

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Well...I checked out the legal/illegal list and even though this diet might help me....what the heck would I eat? :blink:

Seriously? What do you guys eat? My only concern is if I give up rice, beans and potatoes (basically my only carbs) how will I maintain my weight. I dont want to drop under 100 again but I'm barely over right now. Wont I lose weight on this diet?

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OK - I feel really stupid right now, but would someone spell out what the acronyms stand for that you guys are talking about?

Thanks,

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SCD = Specific Carbohydrate Diet

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Seriously? What do you guys eat? My only concern is if I give up rice, beans and potatoes (basically my only carbs) how will I maintain my weight. I dont want to drop under 100 again but I'm barely over right now. Wont I lose weight on this diet?
I would find giving up rice and potatoes very hard. I do eat a lot of vegetables, fruits, and meats, but I just don't think I could ever give up rice. Rice helps to fill me up when I am super hungrey. What do people on the SCD diet eat to fill themselves up if they can't have rice or potatoes?
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Her book has a lot of recipes and menu ideas.

I haven't really started the diet like I should but I got the diarrhea under control anyway although I'm constipated again, but I think that's the dairy products. I'm not going to eat the yogurt or farmer's cheese, it just makes me feel lousy. I have figured out how to make yogurt from coconut milk though!

I does include some beans later on (lentils). No grains at all though.

This week I plan to eat pork roast, veggies with olive oil, probably make a chicken butternut squash soup, home made chicken sausages and salad.

I think eating nuts was giving me the D, I'm not ready for that yet. But I seem to tolerate nut-butters ok (cashew macadamia -- oh boy!) and they're packed with calories.

The one thing people complain about is the amount of time you have to spend preparing meals. But I do my cooking on the weekend and freeze stuff.

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How do you make those sausages?

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How do you make those sausages?

I haven't actually done it yet. But my plan is to defrost some skinless, boneless chicken breasts and grind them up (Kitchenaid attachment). I'll add some spices, still pondering which to use. Then I also bought some hog casings and I'll put the sausage stuffer on my kitchenaid and fill 'em up. Then I'll probably twist them off every 3-4" or so, cut them apart and freeze 'em.

I like to grab sausage for breakfast. They're thickish, more like fat hot dogs. I used to buy turkey sausage from Trader Joe's. But my favorite ones (cranberry and turkey) have sugar, and I can't have that. But hey! Now that I think of it, I do have cranberries frozen in the freezer. Hmmm!

So anyway, that's my plan. We'll see how it goes. I'll probably make quite a mess.

If they come out good I'll make a lot of them!

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can you get pork casing at a grocery? never noticed it before...

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No, I did ask at Whole Foods market but they don't sell them. So I did a google search and found lots of places online where you can buy them. Americanspice.com was one such company.

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I have the book, but not for my girl's celiac disease, someone told me it would help with my husband's crohns disease. The things she said though about being able to "cure" celiac disease made me almost discount everything else she said. My husband has been going back and forth on whether or not he will try the diet, I think the book scared him really. I mean all those foods can't be sooo bad for everyone like she says or we would all be dead. I can understand how gluten is bad for my girl's because they have a disease, but to say things like "potatoes will kill you" which is the feeling I got from the book just seems like she is trying to scare people into following her diet.

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Yeah, I realize it sounds very sensationalistic. But the stories I've heard were that people who really follow the diet closely do have remission of their symptoms. A friend of a friend had Crohn's and got it under control on the diet. But I think it takes fanatical adherance and not everyone is up for that. I'm not sure I am.

The premise seems simple, from my initial scan of the diet. The goal is to only eat mono-sacchrides which are digested by the human body and not feed the bacteria in the gut with anything we can't digest, thereby starving out the bad guys which are wrecking havoc.

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I understand how the book can be hard to swallow. But I think the proof is in the pudding--and so many people have had wonderful success with it. I don't think she is saying that potatoes will kill you, but that in some individuals they contribute to chronic illnesses which are serious enough to lead to a premature death or miserable living. I usually read, assess and make my own determination on information. In this case I think the diet does faciliate healing and remission in many people, but I don't believe one can be 'healed' of Celiac from it.

smunkeemom--How serious is your husband's crohns?

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smunkeemom--How serious is your husband's crohns?

it's pretty bad, they have been talking lately about removing his large intestine, he found a new doctor that is trying some new meds, and they think they are working, so I really hope that they do. He is pretty young to have to go into a surgery like that. :(

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Wow--so sorry to hear that. Fear or not I would definitely definitely try the diet! Have you gone on amazon and read the reviews? If not, show them to your husband. There are so many who were in similar positions and now have no meds to take and are in remission!! I'm sure he wants to do everything in his power to prevent surgery. Please do look at! There's nothing to lose and no harm in trying if it doesn't end up helping. There are several here on the diet too you can ask for help...

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Wow--so sorry to hear that. Fear or not I would definitely definitely try the diet! Have you gone on amazon and read the reviews? If not, show them to your husband. There are so many who were in similar positions and now have no meds to take and are in remission!! I'm sure he wants to do everything in his power to prevent surgery. Please do look at! There's nothing to lose and no harm in trying if it doesn't end up helping. There are several here on the diet too you can ask for help...

he really wants to try the diet, but he is scared that he won't find anything to eat, I tried to tell him that we thought that when we had to put the girls gluten free, but they eat lots of good stuff.

He had a dr. appt this week and they say he has gained 10lbs which means he is healing enough to get food asborbed which is great, I think I may try to find some great stuff to eat on the diet and then just put us all on it for a while, it won't hurt the girls, and I might lose some weight, and if it makes him feel better than it's worth the sacrifice right?

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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