To All Of You Who Are Still Sick Despite Being gluten-free

[danikali]

Hi everyone. I have been on the SCD diet for, actually two weeks today. I have noticed much improvement in these two weeks, but I'm not going to say anything else for right now because I don't want to jinx it!

Anyway, I was just researching Dr. Haas, the Dr. that created this Specific Carbohydrate Diet, and I came to this article. It was written by a woman to Dr. Green (we all know him, right?) regarding the Celiac patients who do not get well JUST by eliminating gluten. If you also look around the site, it has some very interesting info. and topics concerning the SCD diet actually being the cure for Celiac. I am going for my second visit to Dr. Green in the beginning of April, and I'm going to show him this letter to see if he recalls receiving it and what he replyed back to the woman who wrote it. I'll keep everyone who's interested posted. Here is the site:

Open Original Shared Link

I really really hope that this is my answer, and it may be yours as well. I'm not saying I KNOW because I've only been on it for two weeks, but it just makes TOO MUCH SENSE.

Also, Rachel from this website posted a website by a Dr. who is a regular on a radio station in California. He has discussed Celiac/Gluten Sensitivity two times and it too makes a lot of sense.....except I had one question. If you listen to these recordings, you will hear him explain that although we are considered gluten intolerant, 'gliadin' is the supposed enemy. Glidin is the substance found in wheat, rye and barley that is supposed to be the most harmful to us. But to someone who is still sick despite the gluten-free diet, it makes me wonder about the other starches and grains. They TOO have gluten, just not gliadin. Maybe it really IS ALL gluten, and not just 'gliadin' containing grains. For those of us who are still sick, some of you even after years of being gluten free, maybe this is truly our answer. Rachel, if you read this, or anyone else who might remember, can you please post that site again? I just tried looking for it for an hour and I couldn't find it.

Anyway, what do you all think? I have not drawn any real conclusion on this yet, but I'm def. going to see what Dr. Green says, and stay on this diet regardless of anything else. I'm really hoping this is my answer, and I wanted to share it with everyone so that maybe CC isn't our biggest worry. Since I've been on the SCD diet, I haven't been so extremely paranoid about CC like before. (For example, I used to take a coffee cup from the office kitchen that was in the middle of all of the rest of the stacks, and then look in it, blow in it, and still feel a little scared!) I do believe in CC, but how far does it go? And people on this site are constantly posting about wondering where they got CC from, even though they made all of the food themselves, or they ate something that is from a completely gluten free factory. Maybe we can relax a little.......

[Guest cassidy]

I don't know much about the SCD diet. The first question I had after reading this is what about all the celiacs that do get better after just eliminating gluten? I was still getting myself sick when I was eating out, and once I stopped that, I've felt great. I haven't glutened myself in a month or so. So, if it is something other than gluten that needs to be eliminated, why am I feeling go without eliminating anything else?

I totally agree that many of us probably have other food allergies/intolerances which can be difficult to figure out, but I think gluten may be the only problem for some people.

[danikali]

I don't know much about the SCD diet. The first question I had after reading this is what about all the celiacs that do get better after just eliminating gluten? I was still getting myself sick when I was eating out, and once I stopped that, I've felt great. I haven't glutened myself in a month or so. So, if it is something other than gluten that needs to be eliminated, why am I feeling go without eliminating anything else?

I totally agree that many of us probably have other food allergies/intolerances which can be difficult to figure out, but I think gluten may be the only problem for some people.

That may be true. But in her book she makes the argument that although many with Celiac get better on the gluten-free diet, eventually, they get sick again, whether it be 1 week from now, 1 year, 20 years, etc. That's the only thing. But I guess we'll never know for sure because it's impossible to get so many people's input and from so many different stages. I just find it intersting. Maybe it is just another intolerance. Maybe the people who have celiac disease but don't get better gluten-free just have another intolerance to starch and sugars........

[Nancym]

I like the SCD diet on many levels, but my understanding of gluten sensitivity is that we lack the enzyme need to digest certain proteins. I don't think any diet can make you create what you don't have.

[Rachel--24]

I like the SCD diet on many levels, but my understanding of gluten sensitivity is that we lack the enzyme need to digest certain proteins. I don't think any diet can make you create what you don't have.

Yes, I agree.

Some people get better just eliminating gluten and thats all they really need to do. Others may have other issues that need to be addressed. Not everyone with Celiac has problems with other food so not everyone needs to do a diet like SCD. There can be many other factors involved. Does the person have dysbiosis? Do they have bacteria overgrowth? Candida overgrowth? Other food intolerances? The list goes on...not everyone is the same.

I dont believe the statement that everyone with Celiac will get sick further down the road....its not true. Plenty of Celiacs do fine on a gluten free diet and can enjoy all the processed gluten-free food out there.

My doctor said some people cannot tolerate ALL grains. His whole family is gluten-free. I believe his daughter has Celiac...the rest gluten intolerance w/out Celiac. Anyways, his wife cannot tolerate any grains/starches at all. I dont think it has anything to do with gluten in other grains. Some people just cannot digest carbohydrates properly and this can create symptoms. Its like Nancy said...if the enzymes arent there the diet cannot *put* them there. There are specific enzymes for digesting everything...lactose, sugar, carbs, etc. If for some reason you dont have the enzymes these those foods that arent being digested properly end up fermenting and becoming food for the bacteria/yeasts....and you feel sick. It doesnt have to have anything to do with gluten or Celiac. Anyone can have these problems....for various reasons.

Dani, what link were you looking for? The one with the radio programs or something else? Let me know and I'll post it.

[CMCM]

Hi everyone. I have been on the SCD diet for, actually two weeks today. I have noticed much improvement in these two weeks, but I'm not going to say anything else for right now because I don't want to jinx it!

Anyway, I was just researching Dr. Haas, the Dr. that created this Specific Carbohydrate Diet, and I came to this article. It was written by a woman to Dr. Green (we all know him, right?) regarding the Celiac patients who do not get well JUST by eliminating gluten. If you also look around the site, it has some very interesting info. and topics concerning the SCD diet actually being the cure for Celiac. I am going for my second visit to Dr. Green in the beginning of April, and I'm going to show him this letter to see if he recalls receiving it and what he replyed back to the woman who wrote it. I'll keep everyone who's interested posted. Here is the site:

Open Original Shared Link

I really really hope that this is my answer, and it may be yours as well. I'm not saying I KNOW because I've only been on it for two weeks, but it just makes TOO MUCH SENSE.

Also, Rachel from this website posted a website by a Dr. who is a regular on a radio station in California. He has discussed Celiac/Gluten Sensitivity two times and it too makes a lot of sense.....except I had one question. If you listen to these recordings, you will hear him explain that although we are considered gluten intolerant, 'gliadin' is the supposed enemy. Glidin is the substance found in wheat, rye and barley that is supposed to be the most harmful to us. But to someone who is still sick despite the gluten-free diet, it makes me wonder about the other starches and grains. They TOO have gluten, just not gliadin. Maybe it really IS ALL gluten, and not just 'gliadin' containing grains. For those of us who are still sick, some of you even after years of being gluten free, maybe this is truly our answer. Rachel, if you read this, or anyone else who might remember, can you please post that site again? I just tried looking for it for an hour and I couldn't find it.

Anyway, what do you all think? I have not drawn any real conclusion on this yet, but I'm def. going to see what Dr. Green says, and stay on this diet regardless of anything else. I'm really hoping this is my answer, and I wanted to share it with everyone so that maybe CC isn't our biggest worry. Since I've been on the SCD diet, I haven't been so extremely paranoid about CC like before. (For example, I used to take a coffee cup from the office kitchen that was in the middle of all of the rest of the stacks, and then look in it, blow in it, and still feel a little scared!) I do believe in CC, but how far does it go? And people on this site are constantly posting about wondering where they got CC from, even though they made all of the food themselves, or they ate something that is from a completely gluten free factory. Maybe we can relax a little.......

Would you ask Dr. Green more about what he said in his book....that wheat contained in shampoos etc. would not affect you. Many people here seem to disagree with that statement. He is the only person I've read to said that. It would be interesting to see what he has to say about why he thinks that.

As for CC, perhaps we're all different, but you just couldn't find a person who reacts more violently to accidentally getting gluten than my mom....yet, while she's careful at home, she doesn't worry about the toaster, she occasionally makes regular pie crusts for family occasions, and she's careful but not paranoid about it. And she doesn't get sick from this degree of casualness. She rarely gets sick at all, and when she does, it tends to be from some sort of packaged food (one of the Amy's dinners glutened her) or from eating out on some occasions (she doesn't eat out much, though).

[terps19]

What about digestive enzymes to help with the carbohydrates and all? I take a gluten-free, DF< soy free, all allergan free digestive enzyme to help digestive fats, lactose, carbs, protien etc... It is about $15 for 60 tabs and I take one before lunch and one before dinner. Do you think these might help some? To me the SCD is an extreme... many people who I have talked to are on it (they have ulcerative colitis) and while some get better some get worse on this diet...

[aaascr]

While the idea is very interesting, personally

I would have so little to eat if I eliminated

rice and potato from my diet. I'm already

allergic to over 20 foods and most of them

are proteins. Do I feel completely better?

No, ...do I know if it's gluten or allergic reaction?

Not always, but the only food I eat is what

I cook.

And I think too, there has to be some merit

in the point that once on the gluten free diet

that some people are much better.

Just my 2 cents..

[danikali]

Yes, I will def. ask Dr. Green all about his book. I personally didn't like what I read of it, so I have many questions for him, including issues on CC and other food intolerances.

Anyway, terps19, I've tried papaya enzymes before, (they were supposed to be the best) but they didn't do anything for me......? Hopefully, they'll work for you. And yeah, you all are right.....everyone is different so while some can have NO carbs, some can have LIMITED, or ALL but gluten.

But terps, (sorry, I don't know your name), you say that the diet worked for some people you know and some, it made worse??? May I ask how it made them worse?

[Nancym]

I don't believe you can really count on enzyme supplements you ingest will get to where they need to be to help break down the stuff you're eating. Even if they do manage to survive to get to the place in your GI tract they need to be, they might get there ahead or just after your food does. It's like trying to jump onto a bobsled!

[cynicaltomorrow]

i would definitely not recommend SCD. I was really excited when I first heard about the possibility of being able to eat normally again. I should've just stuck to being gluten-free. I was on SCD for 7 months... ending last June. I am still SO sick and have had to have more visits with my gastroenterologist than ever before. I only started getting sick after about a month of being on the diet... suddenly. I am NOT willing to start the diet over for a 4th time... as it completely controls your life. I couldn't even travel out of town for a few hours. I do not want all my time to be spent planning meals. so... yeah... bottom line.. I don't recommend this diet.

[Rachel--24]

i would definitely not recommend SCD. I was really excited when I first heard about the possibility of being able to eat normally again. I should've just stuck to being gluten-free. I was on SCD for 7 months... ending last June. I am still SO sick and have had to have more visits with my gastroenterologist than ever before. I only started getting sick after about a month of being on the diet... suddenly. I am NOT willing to start the diet over for a 4th time... as it completely controls your life. I couldn't even travel out of town for a few hours. I do not want all my time to be spent planning meals. so... yeah... bottom line.. I don't recommend this diet.

Maybe it was something you were eating on the diet that made things worse for you? Were you eating the yogurt? I've been on the diet 3 weeks now and feel much better. I also was able to determine that I'm casein intolerant because of the fact that there are so few foods in my diet right now.

I've been off casein 3 days now and the difference is amazing. I know its the elimination of casein which really made the difference and not the SCD itself but w/out having started the diet I probably wouldnt have figured it out. I plan on staying on the diet...maybe not a full year but definately for a long while. Its working for me.

[gf4life]

I read the letter with the link provided and I am confused. Is the letter writer suggesting that Dr. Green put his patients on the SCD diet instead of the gluten-free diet or in addition to the gluten-free diet?

I have head many people who had great success witht he SCD diet and others who were made worse by it, so I cannot say it is the solution for everyone. I haven't personally tried it, but I would NEVER consider replacing the gluten free diet with the SCD diet. I might consider doing both though if it would improve my health. I am certainly NOT feeling better anymore. But I think my problem is that I went back on dairy after being dairy free for over a year. I didn't have problems at first, but slowly started to feel sick again. It is not like being sick from gluten, but it isn't good health either. I am just trying to work up the energy to go dairy free again.

[corinne]

The SCD is gluten free. The difference is that in addition to being gluten free, it is essentially free of all carbohydrates (corn, rice, potatoes, many types of beans) except those that are easy to digest such as simple sugars. For me, gluten free didn't work. I was free of D, vomiting and cramps within 2 weeks on the SCD. I also had to eliminate all dairy including butter - there was no improvement until I did. Dairy free and gluten free only doesn't work for me either.

The SCD does take some planning, but once you're used to it, not really any more time than any other diet. I just eat lots of well-cooked non-starchy veggies (ie carrots, zucchini, beets, squash), lots of canned fruit and lean meat. Eventually, I'm hoping I can tolerate fresh fruit and veggies. I work long hours so I spend an hour or so cooking up a big pot of soup or veggies 2 or 3 times a week. I just got back from a 3 day backcountry ski trip (10 miles from the nearest road and 80 miles from the nearest town) and the diet went fine so it is very doable.

If gluten free is not working, the SCD is probably worth trying for a month or so. Keep a food and symptom diary and see if it helps.

[CMCM]

All I can say about myself is that I went gluten & casein free but still felt terrible, with ongoing D and other stuff like before. Not the great improvement I'd hoped for.

Than as a side issue, since I want to drop 15-20 lbs. or so, I remembered being on the Atkins diet 3 years ago, and how shocked I'd been at how GOOD I felt on that diet, plus the fact that weight just dropped off without hunger or cravings. I felt great on it.

So I started doing Atkins again a 8 days ago, and within a couple of days by stomach was quiet....I felt great and "normal" again. I continue to feel like this as the diet progresses. So what is different in this diet compared to gluten-free/CF but eating all the gluten free stuff out there?

1. Still no gluten or casein EXCEPT....some small amounts of cheddar cheese, which oddly, doesn't bother me. (I'm thinking I read that in hard cheese production, casein is reduced???). I don't know why it doesn't bother me....milk, ice cream, even yogurt always killed me. But not 1 or 2 oz. of cheddar here and there.

2. No starches at all....no corn, no rice, no potatoes, no alternate flours as in all the gluten free stuff.

3. Lots of eggs, which I'm OK with

4. Lots more meat than I ate before (all lean stuff....turkey, chicken, fish, only occasional beef)

5. Lots of water

6. No sugar! No sugar! No sugar!

7. A good amount of salad veggies, broccoli, cauliflower, squash, cucumbers...things like that.

8. No grains of any kind.

9. Currently...no fruit (which I miss)

Known things to bother me that I'm now avoiding: starches, sugar

So there you have it....for me, anyway. This is actually a fairly do-able diet, and I can eat out if I'm careful about the gluten. And I feel so GOOD, I can't emphasize that enough. I haven't felt this good and normal in years. No bathroom worries on this diet!

I hope that later, after Ive been gluten free for a time, I won't be so sensitive to these other things. Meanwhle, this works for me and I'm finally losing weight effortlessly. Bloat is all gone, too!

[gf4life]

The SCD is gluten free. The difference is that in addition to being gluten free, it is essentially free of all carbohydrates (corn, rice, potatoes, many types of beans) except those that are easy to digest such as simple sugars.

Okay, that makes sense. I don't think I could handle that at all.

I did a diet similar to that that eliminated virtually all grains/starchy carbs, dairy and sugars. It was only lean meats and eggs, non-starchy veggies and certain fruits that were low in natural sugars (like berries and such), and I could also have most kinds of nuts. I had a hard time with it because of the proteins. I can't digest them well and yet I was supposed to eat a 3-4 oz serving of protein at every meal. I lost a lot of weight, had energy and felt good for about a month and then after that I felt sluggish and stopped digesting. After 2 months I had to quit. I tried a modified version, but it didn't help. I do better on Gluten-free Casein-free and small amounts of protein avery few days. There are a few days a week where I never do eat meat.

Thanks for the explanation. I stick by my statement that it won't work for everyone, but it is worth a try to see if it works for you.