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AliB

Specific Carbohydrate Diet (SCD)

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Jan I've had the same reaction for a long time about fermented foods. However, to my big surprise, I find the cabbage juice quite palatable, it is especially easy to handle when diluted.

Have any of you tried the Sacchromyes Bouldari (sp?) that is available from GIProHealth? I recall that maybe it was Shay who found that extremely helpful. She's not been here for a long time, unfortunately.

I strained my first patch of cabbage juice today and I like it! I used a couple of acidophilous capsules as a starter and after 3 days on the counter the juice had a pleasant tang. I'll know by tomorrow if I should keep drinking it!

I have been using Sacromyces Boulardii. It is a beneficial yeast that supposedy safeguards against c. diff infection and has many other benefits. When my friend's horse went to OSU for surgery, they sent him home with a container of S. Boulardii.

S. Boulardii is found in Kombucha. I still don't know if G.T.s Kombucha is SCD legal, but I drink it anyway. No illegal ingredients are listed.

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I have the brainfog but not the migraines, sounds miserable.

Ali, thanks for the leptin info, its interesting. It makes sense in another way for me in that I bloat more toward the end of the day. I wonder if water input should be shifted as well?

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Pele, that's great you like the cabbage juice. When I dilute it to drink I like it better, but its okay straight too.

Did you notice improvement from the S. Bourdarii?

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Pele and all-- any suggestions on your basic recipe for the fermented cabbage juice? I am betting it was on this site earlier on--but thought I'd ask... I don't see it in Elaine's book.

So far the scd diet is working great for me! I tried some cherries yesterday and today peaches. My body seems to be adapting quickly. For me being able to eat fruit again without getting some skin cracking and peeling with underlying nflammation and gaseous smells etc. is a minor miracle.

I also tried eating some organic sharp cheddar cheese. Again no problem though I could tell I shouldn't eat a huge amount of it. All in moderation, eh?

So here was the scene--I went into TJ's today and bought fruit and cheese and even a small bottle of honey. I felt like a kid in the candy factory!

I looked for dry curd cottage cheese both there at TJ's and at WF without success. Didn't see it at Safeway yesterday either. Any suggestions?

Bea

PS--now I see it --from early August! Just before I joined this group. It does look easy:

from mftnchn: "By the way everyone, the cabbage juice is easier to make than the yogurt. No temps to monitor. Just wash the cabbage, tear up into the blender add the water and blend, add a little of your previous batch of juice, and let it sit. 24 hours later, strain it, throw away the cabbage and make your new batch." Then I think mftnchn suggests one use 1/8 tsp probiotic and a cup of water or some such...

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Bea, its wonderful that you are progressing so well.

The basic cabbage juice recipe I am using is on www.pecanbread.com

3 C cabbage, 1 3/4 C water. The first time let it sit 3 days, no probiotic needed, but you can add some acidophilus if you want. After that, make it fresh everyday and add 1/4 C of the previous juice. 24 hrs from the 2nd batch onward.

Sherry

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I know you are really restricted, but you might give Elaine's protocol for constipation a look. Its posted somewhere on www.pecanbread.com as I recall.

What are you doing for probiotics? That's really important. I've cut back on yogurt recently and am using fermented cabbage juice, which is actually quite palatable. Adequate probiotic may help with C.

Magnesium comes in many forms and some may work better than others. The intestine needs magesium in order to contract. Some people are low in magnesium. In my case, lyme uses a lot of magnesium, or causes magnesium wasting or some such. I tend to be quite low, and on gluten-free initially had to use huge doses of Mag to help with C. I was able to gradually cut that back. On SCD this problem has come and gone, although overall much better. Vitamin C can help too and isn't dangerous in high doses--you can go up to bowel tolerance.

One final thing I discovered is that parasites cause C. The best test currently out there according to my doctor is by Metametrix. It checks for their DNA. SCD cleared out a lot of these, I know because I saw some (most are not visible though). TMI, sorry. However, I had one nasty remaining parasite that I have had 2 rounds of treatment for so far. Celiacs (and lyme patients) are among those more susceptible to parasites.

Thanks again for the great suggestions. Probiotics from GI Pro Health are on the way.

Parasites - oh man. I will definitely look into this more. No info is TMI by the way.

One of the aforementioned (complained about, sorry) doctors I've seen had recently recommended upping my salt intake to help with low blood pressure. When checking into what salt does besides raise your blood pressure I ran across the info below and thought that particularly the second paragraph may be of interest to others on this forum. I don't know if the info is accurate of course but it's worth looking into. I know I've been eating a lot of salt on the SCD and before.

"The primary health problem caused by table salt is not that it contributes to high blood pressure in people with poor kidneys, though it does that. It is not that eating salt ruins the kidneys; salt probably does not do that. The real problem with salt is that sodium chloride is an adrenal stimulant, triggering the release of adrenal hormones, especially natural steroids that resist inflammation. When these hormones are at high levels in the blood, the person often feels very good, has a sense of well-being. Thus salt is a drug! And like many drugs of its type, salt is a habituating drug. However, we are so used to whipping our adrenals with salt that we don't notice it. What we do notice is that we think we like the taste of salted food and consider that food tastes flat without it. But take away a person's salt shaker and they become very uncomfortable. That's because the addict isn't getting their regular dose.

What's wrong with repetitive adrenal whipping is that adrenal fortitude is variable; many people's adrenals eventually fail to respond to the prod of salt and the body begins to suffer from a lack of adrenal hormones. Often those inheriting weak adrenals manifest semi-failure in childhood. The consequence is that ordinary, irritating substances begin causing severe irritation. The person becomes allergic to pollen, dust, foods, animal danders, etc. We see asthma, hay fever, sinusitis, etc. Though one can then discover specific allergens and try to remove them from the environment or diet, often this case can be solved far more easily by complete withdrawal from all salt. This rests the adrenals and they may recover their full function; almost certainly their function will improve. The asthma, allergies and etc., gradually vanish."

http://chestofbooks.com/health/Isabelle-A-...-And-Sugar.html

From the "How and When to Be Your Own Doctor" book, by Dr. Isabelle A. Moser with Steve Solomon, published in 1997.

OK, sorry for the long post. I hope everone is doing well.

-P

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Just a reminder to please keep the thread on topic- the SCD diet, not parasites, adrenals, etc. Scott has been very clear about this in the past. Thanks.

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Bea, its wonderful that you are progressing so well.

The basic cabbage juice recipe I am using is on www.pecanbread.com

3 C cabbage, 1 3/4 C water. The first time let it sit 3 days, no probiotic needed, but you can add some acidophilus if you want. After that, make it fresh everyday and add 1/4 C of the previous juice. 24 hrs from the 2nd batch onward.

Sherry

Thanks Sherry--it really is hard for me to believe that I am actually expanding my diet with scd --esp. so quicklyl, but I can't fault fact. Thanks so much for encouraging me! It does seem a bit miraculous, though when I stop and think of the science it makes sense. It just is so different than what I thought!!

I will definitely make the cabbage juice tonight. Thanks for the recipe!

Meanwhile my 3rd batch of yogurt is in the oven -- soon to be ready.

G remains to be further convinced; he hasn't gone totally on the scd thing yet. Nevertheless the yogurt so far is helping him too. He had some gluten-free chocolate torte and of course it did not agree with him. He hardly slept at all last night. I really think however with this new diet staying on diet will be more possible for him--esp. with the honey.

Bea

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Here's what I wrote last night - my internet was down. I'm going to journal this process, but I probably won't post it all here. But this was my day yesterday!

SCD Day 1

I

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Beverly, as has been stated here before, a clear premise of the SCD diet is that it helps move out parasites and bad bacteria from the intestine as part of the healing process and the whole point of SCD. So we do consider this on topic. Its discussed in BTVC, the book we are basing our diet on.

Liz, it does take some time to adjust! Be kind to yourself. Also cravings for food are very common at first, it seems to be part of the killing of the parasites and bacteria that happens in the introduction of the diet. It does subside. Meanwhile, hopefully others will post ideas. I just didn't restrict honey at first. I needed it to get through this time, and used quite a bit--like in gelatin and in my yogurt. After a week to ten days that all quieted down, and I was no longer starving all the time, could cut back the honey and found the meat and veggies filling.

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Beverly, as has been stated here before, a clear premise of the SCD diet is that it helps move out parasites and bad bacteria from the intestine as part of the healing process and the whole point of SCD. So we do consider this on topic. Its discussed in BTVC, the book we are basing our diet on.

You addressed this to Bev, but as a fellow moderator, I will post what was sent to AliB regarding being on topic in mid-May:

The subject of the thread is the Specific Carbohydrate Diet. What does that mean?

The Concise Oxford Dictionary, 9th ed. says:

diet n. 1 the kinds of food that a person or animal habitually eats. 2 a special course of food to which a person is restricted, esp. for medical reasons or to control weight.

Discussions about which foods are and are not permitted, how to prepare them, where to buy them, and such are on topic. Recipes and cooking techniques or tips are about food, and thus are also on topic.

If it isn't about food, it isn't on topic. Scott's forum, Scott's rules. End of discussion.

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Second day going pretty well. We "cheated" by eating a few strawberries. This is waaaayy harder than just gluten free and dairy free!

Omelettes for breakfast, chicken soup and canned pears for lunch, jello (made with diluted grape juice) for snacks and we have salmon grilling right now along with some zucchini and peppers. Baked apple slices will be dessert. I guess not too bad! My daughter went to Costco with me and I told her "no chips or junk food of any kind!" She was really helpful - she's 16 and understands how important this is. We got every type of fruit imaginable for "treats" for everyone. By the time we were done we had $220 of meat, fruit and vegetables.

Looking at the "Stage 1" foods from pecanbread.com gives a little more variety. We'll be experimenting with meringues tomorrow. And even though they look weird, I might try some of the "bread" recipes.

Anyone have a favorite bread recipe?

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Liz

I wouldn't worry too much about following the stages in pecanbread. Elaine said that she was unsure how important is was to follow an introduction to the diet, and her recommendations changed with each new edition of the book. pecanbread is primarily a site for parents of autistic children, not for people with ceilac or UC. So don't feel like you are cheating with strawberries. They are legal.

I didn't follow an intro at all and the diet has worked fine for me. I'm sure some of the hardcore BTVC folks wouldn't approve, but that's what happened.

Hunger can be a problem especially at first. We are used to filling up on grains and potatoes and need to replace those items with other things. This may mean eating much larger portions of things we are used to eating in moderation, like meat, eggs, peanut butter, avocadoes. Instead of 2 eggs and toast, you might need to serve 6 eggs, or 2 eggs and a quarter pound of ground beef for breakfast. Once you get going a bit, then you can introduce beans or lentils which are cheap and filling. Winter squash season will be here soon.

I don't bake any bread, but the basic muffin recipe in the book is good, especially with blueberries, and the apple cake is good.

I'm glad you've embarked on the diet and are telling us about it. I'll bet the whole family will feel better.

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Bea

When I made my first batch of cabbage juice, I used 2 capsules of Country Life acidophillous, just emptied them into the blender. And I didn't measure the cabbage or water. Typical!

I've been drinking it for three days now and it has improved my digestion, which has been a bit stressed from too many blueberries and plums.

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Bea

When I made my first batch of cabbage juice, I used 2 capsules of Country Life acidophillous, just emptied them into the blender. And I didn't measure the cabbage or water. Typical!

I've been drinking it for three days now and it has improved my digestion, which has been a bit stressed from too many blueberries and plums.

Thanks Pele! Goes to show this doesn't have to be exact. I am betting in the old pre-refrigeration days etc. it was whatever one had.

I just noticed the old acidophilus that I have has FOS in it--which I gather is a no no for the scd.

Am thinking maybe I should just use a little of the whey in the cabbage juice from the home made yogurt?? I will check the pecanbread site to see what if anything they might suggest...

Bea

PS--Too many plums is still too many plums, eh? Hope your tummy feels better soon!

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Thank you! This is all interesting and confusing at the same time. I can't seem to get an answer from the UC SCD group on how to know if it's okay to add new foods. They seem to have a "clique" going and if you're not well established, they kind of ignore your questions or make it seem like you're just trying to find a way to cheat. All I want to know is how to help my son get better and stay out of pain.

I'll start giving him (and me!) a little more variety today. I'm even hungry!! The really sad thing is that I somehow have gained weight the past two days - not sure how this is possible since I've eaten nothing but meat, veggies and fruit! And I haven't even overdone that!

My biggest question right now is when I can start baking with the nut flour. Should I just try it and see if it agrees with him? He needs some serious calories since he's 14, growing and will start HS football practice tomorrow.

I'm also trying to figure out what to pack him for lunch once school starts. And he has football practice for 7 hours on Wednesday, Thursday and Friday - with a dinner break. I guess I'll be making his dinner and delivering it to him. (Thankfully, his coach is a great guy and understands what's going on and is willing to work with him and be patient if he doesn't have all the energy that he normally does. He's lost 20 pounds since spring and just isn't physically where he would like to be.)

Some day, when we go back to "just" being gluten free, it will seem SO easy!

Liz

I wouldn't worry too much about following the stages in pecanbread. Elaine said that she was unsure how important is was to follow an introduction to the diet, and her recommendations changed with each new edition of the book. pecanbread is primarily a site for parents of autistic children, not for people with ceilac or UC. So don't feel like you are cheating with strawberries. They are legal.

I didn't follow an intro at all and the diet has worked fine for me. I'm sure some of the hardcore BTVC folks wouldn't approve, but that's what happened.

Hunger can be a problem especially at first. We are used to filling up on grains and potatoes and need to replace those items with other things. This may mean eating much larger portions of things we are used to eating in moderation, like meat, eggs, peanut butter, avocadoes. Instead of 2 eggs and toast, you might need to serve 6 eggs, or 2 eggs and a quarter pound of ground beef for breakfast. Once you get going a bit, then you can introduce beans or lentils which are cheap and filling. Winter squash season will be here soon.

I don't bake any bread, but the basic muffin recipe in the book is good, especially with blueberries, and the apple cake is good.

I'm glad you've embarked on the diet and are telling us about it. I'll bet the whole family will feel better.

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Beverly, as has been stated here before, a clear premise of the SCD diet is that it helps move out parasites and bad bacteria from the intestine as part of the healing process and the whole point of SCD. So we do consider this on topic. Its discussed in BTVC, the book we are basing our diet on.

That may be so, however, it's not for this board. As someone who has parasites (babesiosis) and bacteria (Lyme), I still manage to keep on topic. One would think you could do the same. Most of the members of this thread do!

You addressed this to Bev, but as a fellow moderator, I will post what was sent to AliB regarding being on topic in mid-May:

The subject of the thread is the Specific Carbohydrate Diet. What does that mean?

The Concise Oxford Dictionary, 9th ed. says:

diet n. 1 the kinds of food that a person or animal habitually eats. 2 a special course of food to which a person is restricted, esp. for medical reasons or to control weight.

Discussions about which foods are and are not permitted, how to prepare them, where to buy them, and such are on topic. Recipes and cooking techniques or tips are about food, and thus are also on topic.

If it isn't about food, it isn't on topic. Scott's forum, Scott's rules. End of discussion.

Thanks Peter- well stated.

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Hi Liz

Every time I read something by someone who treats the diet like a religious cult, I go back to the book and read what Elaine really said. In BTVC (2004) on page 71 she says: "There is no specified schedule for introducing foods withe exception of homemade yogurt...The order for introducing ... varies with each individual"

I would go right ahead and bake something with nut flour and see how he does with it. My advice is keep the portions small for now. One little muffin has a lot of almonds in it. The other food that might help is honey. If he can tolerate it it can help with food cravings early in the diet.

I'm glad you are going to pack him a lunch. I think it is very important for anyone on a special diet to carry food with them. It is just too hard to be hungry when there is nothing to eat but vending machine or fast food fare.

I pack lunch most days. I always take a banana and raw vegetables in bit-sized pieces. If I couldn't eat raw veggies I'd cook them first. I also pack some kind of meat in managable pieces and already salted. It might seem strange to eat a burger for lunch without the bun, no ketchup, but I just put it in a sandwich bag and then I can eat it one-handed. If I expect to be gone from home longer that usual, then I take a bag of nuts and dried fruit, too.

Once he gets accustomed to eating vegies instead of grain, he will find vegetables more filling and satisfying.

I assume you are not picking out the lowest fat cuts of meat? Chicken thighs with skin have a lot more fat than skinless chicken breast, for example. We have been programmed to buy low fat items and now is the time to move on from that idea. He will be less hungry and lose less weight with adequate fat replacing the lost carbs.

Are you looking for a half a beef to buy yet??

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Liz, you and your family may well find that you crave the 'goodies' for a while, even the gluten-free ones, because they are often loaded with sugar and are typically very carb dense - even more so than gluten foods, which turns to glucose in the body - sugar.

What the body is craving is the sugar fix for energy. Glucose gives the body 'instant' energy, but it is not a sustaining energy and not a proper energy source. The body will call on glucose for immediate 'flight or fight' response but in day to day needs it really should be burning ketones for a more efficient and sustaining effect.

Those come mainly from good fats and oils like butter (in moderation), ghee, coconut oil, fish oils, olive oil and the natural oils in vegetables, seeds and nuts.

Weight gain can happen for two reasons - either your body is trying to find its 'level', especially if you are underweight, or you are eating too much food!

What most of us who have been following the diet for some time have found is that because we are eating a diet that provides us with a much higher nutritional level, we don't actually need to eat so much food and as the body starts to rebalance itself the hunger signals start to work properly.

People can be constantly hungry and eating all the time, yet be nutritionally malnourished. It seems a contradiction in terms, I know but we all know of those extremely obese people who can't stop eating - if you analyse their diet most of it will be nutritionally 'dead'. Their bodies are telling them to eat because they need nutrition - vitamins, minerals, trace elements and one that most people never consider - enzymes (which only come from raw foods). Unfortunately their poor bodies never actually get it, so the cycle of hunger and eating just gets stuck in a loop!

Most of us have been through the carb/sugar withdrawal - it may take a few days, but if you can hang on in there it will pass - just don't be tempted to overdo the fruits and honey and baked nutty goodies. Honey is better than sugar and fruits than pastries, but they are still blood sugar/insulin triggers and some can still get through to feed things like Candida and the body will store the excess sugars in the fat cells.

I also think that most of us who have been following the diet for some time have woken up to the insidious addictive trap of carbohydrates and how they can hook us on an invisible string! The people that make this stuff are only in it for one reason and that is to make money - the fact that it is damaging us is of little consequence.

I have done an awful lot of research over the last 18 months and keep coming back to not only the toxic nature of this stuff and all the chemicals we are surrounded by triggering a lot, if not most of the diseases and ill health we suffer, but that if we want vital and vibrant health we have to eat vital and vibrant food, and the more nutritious it is, the less our body needs to demand to have its needs filled.

When you realise the benefit of eating this way, the lure of wanting to go back to health-damaging 'normal' eating becomes less attractive by the day. What is 'normal' in any case? Just because 'everyone else' is doing something doesn't make it the right thing to be doing!

I know for me, that it was the so-called 'normal' diet that got me into this mess in the first place and I really don't want to go there again.

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Hmmm, I think the real reason I was hungry was because I was only eating about 900 calories for the first couple of days. It's kind of hard to get enough calories through meat and vegetables and a little fruit - my son has been eating twice as much meat and drinking more juice and eating lots of canned pears, so he's probably okay.

I've been gluten-free, dairy free and soy free for years and already make 95% of our food from scratch. This is just a new way and there's a bit of a learning curve. I'm not a big sugar eater to start with. My health is already good, I'm just doing this with my son for moral support. He usually eats a TON of sugar (mostly candy that he gets at school and ice cream that my husband buys - well, not any more!).

My biggest problem right now is trying to organize and plan everything so I don't spend all my time trying to figure out what we're going to eat and then making it. Teen friendly lunch items are going to be a challenge. He basically can't eat any of the gluten-free standby foods - turkey sandwiches, chips, juice boxes, raw carrots, apples, homemake cookies and Envirokidz cereal bars. He was happy with pretty much the same lunch every day last year, so hopefully I'll find something that he likes that's doable this year. No microwave and only 25 minutes to eat, so it's even hard to take a thermos or something back to his locker before his next class.

Has anyone found any type of lunch meat that's "legal"? That would make life a lot easier. The turkey that I've been buying is chemical free and gluten-free, but has sugar in it.

Thanks for the information and encouragement!

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Liz,

What about broiling some skin-less pieces of chicken? You can do batches of those so you have them ready for a few days worth of lunches. Together with chunks of cucumber (or other vegetables), a handful of nuts and a bit of oil/salt and you have a ready lunch pack. a cup of apple sauce or a banana can be added for the sweet cravings ...

If your son can digest them, nuts are great. They've been my saving grace throughout. Only make sure to get them unroasted, raw and preferably organic, if you can.

Also canned tuna in oil (no spices!) can go into a lunch.

hope you figure out something workable.

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Especially to all those on the SCD (though gluten-free people welcome too!), I would appreciate your input...

I went gluten-free 5 weeks ago (on a self-diagnosis of probable celiac), and one of the first benefits I experienced was improvement in sleep: after about a week gluten-free, I slept beautifully and unaided for probably 5 days. After that, though, my terrible insomnia returned, and I don't think I've had one genuinely good night since then (though I'm the kind of person who really needs at least 7 hours to feel human; less than 6 and I feel really unstable). About 5 days ago I decided to try the SCDiet, in hopes that removing carbs would aid my sleep and speed my recovery in general.

So, I've definitely seen more improvement on this diet (better energy and mood!) so far than on gluten-free alone, but my sleep has not improved yet at all. I lie awake for awhile, fall into a twilight sort of sleep, and then am jerked awake. This can happen to me four or five times before I give up and take a Lunesta. Lunesta puts me quickly and easily to sleep, but I don't want to have to rely on it for too long.

Have any of you had similar experiences? How long on the SCDiet did it take for you to see an improvement in sleep patterns?

Many thanks!

~Emily

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I saw some improvement to my insomnia on the gluten-free diet. That was because my congestion and post nasal drip was reduced so dramatically. I would cough myself awake before. I have taken melatonin for many years and it does help me with a deeper sleep.

In the last few months I supplemented magnesium and that has also helped my sleep. It relaxes the muscles and blood vessels. I can really stretch out and loosen up. I still wake up several times a night but I can now return to a restful sleep instead of lying awake for hours.

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Hi Michelle,

Glad if the grape fruits can work for you as well. :) And it might be that the carrots are too sweet for your system. I have problems with them too, particularly if cooked. Recently, I have been able to eat a small one here and there, but only if raw and if a non-sweet kind.

I'm not doing the fermented foods. Probably should, but I can't get myself into it, and the yogurt doesn't agree with me. So I just stick with powdered or capsule probiotics, and hope they do the job ....

Jan

Hi Jan,

I haven't tried grapefruit yet but plan to. I just made some plain jello and put a little honey in it - i didn't eat much of it because it had no taste but tried to eat some. I drank a lot of water and some of the SCD electrolyte drink and chicken broth made with boneless breasts not cooked very long. It wasn't bad at all and i felt ok on just the clear liquids. I found some organic cabbage so i'm going to start the cabbage juice tomorrow night so hopefully that'll help - i'm just taking the probiotic capsules right now also.

My GI Dr. prescribed liquid carafate for me to take 1 T an hour before each meal and 1 T before bed for my stomach lining irritation she found on my endoscopy on Monday. She also saw some green bile in my stomach and specks of dried blood but no ulcers. She took biopsies from my stomach and small intestine so hopefully i'll hear something soon. I'll have a followup appt in about 2 wks. She supports the SCD so she knew i'd been on it for a while and i'd been gluten-free for 1 1/2 years. The carafate seems to really be helping and one of the side effects is constipation but so far since i've been taking it i'm going twice a day! So, so far so good and i've had no stomach soreness or pain since taking it. It has sorbitol and probably other illegal ingredients in it but it doesn't seem to bother me so far. Hopefully i won't have to take it very long - i don't like using illegal ingred. but since it's helping i'm going to continue. Oh and it also has aluminum in it...yikes! The sorbitol does give me a bad taste in my mouth but i'm brushing and rinsing really good and scraping my tongue after taking it and that helps. Oh and i think i have an allergy to latex or something they used - i woke up from the procedures (felt like i'd only been asleep for 5 min!) and my nose immediately itched and started running but i didn't think nothing of it since it had been bothering me off and on from ragweed blooming here. It gradually got worse and Tues. i sneezed and blew my nose all day long and felt miserable. My skin around my nostrils is red and raw - maybe from blowing but maybe from the latex from the oxygen tube they put in my nose? My sister did the same thing after hers - i don't know if she had the red skin around her nostrils but immediately had the sniffles / allergic reaction along w/headache - her Dr. suspected latex. I called my Dr. office and they're looking into what it might have been. I felt better Wed. so maybe it had moved out of my system - i found a post from Ali on here about drinking water with a little salt and i tried it and it seemed to really help - thanks Ali! I didn't want to take an antihistamine - don't think there's any that are SCD legal that i could find. I used NeilMed nasal cleanser also and it seemed to help too.

Good news is i don't have to have a colonoscopy until 4 years - i get an extra year...yay! :)

Hope everyone is doing well!

Michelle

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What am I doing wrong?

My son has LOST 6 pounds since we started on Sunday. He can't keep losing weight! He hasn't "cheated" except for eating peaches, strawberries, coconut milk and some almond pancakes, which aren't cheating, just moving ahead a bit quickly. I have to find a way to keep some weight on him. He's lost 22 pounds since school got out at the beginning of June. He doesn't have much D from the UC.

I, on the other hand, have developed D and I was perfectly fine before starting this. I haven't cheated at all and have just eaten what he has, with the addition of some grilled zucchini and peppers. My husband and I both have headaches and I plain feel lousy. This is taking up ALL my time to research, plan, prepare and cook for everyone, including my 3 other kids who aren't on SCD. I find myself fighting tears, wondering if I can really do this, but afraid not to because of how sick I know my son will get if we don't do this. Help?

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    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
    Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
    A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
    The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response.  "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
    In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
    O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com

    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

    Jefferson Adams
    Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
    Ingredients:
    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
    Purée all ingredients together in a blender.
    Cover and refrigerate for at least 1 hour. 
    Adjust seasoning with salt and pepper, as desired. 
    Serve is a bowl with tortilla chips and guacamole.

    Dr. Ron Hoggan, Ed.D.
    Celiac.com 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
    So how, you may ask, is all this related to gluten? As a starting point, one report from the medical literature identifies a patient who developed aphasia after admission for severe diarrhea. By the time celiac disease was diagnosed, he had completely lost his faculty of speech. However, his speech and normal bowel function gradually returned after beginning a gluten free diet (8). This finding was so controversial at the time of publication (1988) that the authors chose to remain anonymous. Nonetheless, it is a valuable clue that suggests gluten as a factor in compromised speech production. At about the same time (late 1980’s) reports of connections between untreated celiac disease and seizures/epilepsy were emerging in the medical literature (9).
    With the advent of the Internet a whole new field of anecdotal information was emerging, connecting a variety of neurological symptoms to celiac disease. While many medical practitioners and researchers were casting aspersions on these assertions, a select few chose to explore such claims using scientific research designs and methods. While connections between stuttering and gluten consumption seem to have been overlooked by the medical research community, there is a rich literature on the Internet that cries out for more structured investigation of this connection. Conversely, perhaps a publication bias of the peer review process excludes work that explores this connection.
    Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
    There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

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    • The gluten challenge is 12 weeks of eating gluten for the blood antibodies tests and 2 weeks for the endosocpy.  There is also the test for DH (dermatitis herpetiformis) which is a skin biopsy.  DH causes a rash on the body, often in a symmetrical pattern.  The IgA antibodies are deposited in the skin and cause the rash.  They test for DH by taking a small skin sample from next to a lesion, not on a lesion.   Going to a dermatologist who is familiar with celiac disease/ DH could be an option. Check around your area to see if you can find a dermatologist that other people with celiac disease and DH have seen.  Sometimes hospitals have celiac support groups and you might find some doctor recommendations from them. Celiac disease is not easy to diagnose but if you aren't eating gluten it is pretty much impossible to diagnose.  That may change in a few years as there were new tests being talked about that may be able to do diagnosis without a gluten challenge.  But they aren't available yet.  
    • Might be your new regular, if you went to a whole foods diet with plenty of veggies, etc. And less processed crap your getting more fiber. I used to get constipation before going gluten free....yours could be a similar issue but just 2 months is a rather short time. Many times constipation is brought on by magnesium issues, healed gut, etc. can fix this,

      Other thoughts, are you consuming a lot of fruits, juices, taking vitamin C. Frequent bowl movements could also be your getting your upward threshold of vitamin C. You could be getting more fiber then your used to.

      Or you could be getting a light gluten exposure from a condiment jar/butter tub with crumbs, or a pan with scratches you did not throw out. Ate outside your own house? Do check the newbie 101 thread to see if you missed anything.

      Any other information you can tell us? Like what you eat, Do you see pieces of undigested food? This could be a enzyme issue or a gut biome issue.
       
    • Sure.  That could be normal for you.  2 months isn't that long to heal and get everything regulated.   It may be different 2 months from now.
    • I have been recently diagnosed with Celiac's Disease.  I have changed my diet for the last 2 months.  I am finding that I have to go to the bathroom about 3 or 4 times in the morning.  It is not diarrhea. I used to go once a day. Is this normal?
    • I think what is going on for a lot of people experiencing being glutened by vapours is that they are perhaps mis-attributing the experience to the vapour, when in fact they were glutened by other means (swallowing airborne flour particles, splatter, touching contaminated surfaces). Proteins (eg. gluten) are heavy, and cannot evaporate or be suspended in water droplets that have evaporated.  I have worked for many years in different lab settings working with dangerous chemicals and biohazardous materials (human/animal tissue and bodily fluids). You should see what I am legally required to wear when handling materials that are merely hazardous by ingestion or particulate/droplet inhalation! I have to wear gloves, a mask and two layers of protective clothing. I am not allowed to bring food or water into the same room at all, and must remove all clothing/protective equipment before leaving the experiment room. Why all this? Because humans are really, really bad at touching contaminated surfaces and then touching their faces. This is how you get most of the colds, flus, and stomach viruses you've had in your life. You touched something bad, and touched your face! We wipe stuff on our clothes. Droplets or powders fly up into our faces when we handle stuff, cut, and mix stuff, and we don't notice unless it's "a lot." But we can get sick from much less than "a lot," whether that's gluten or some noxious chemical/pathogen.  I live in a shared kitchen, and I do not go in there when my roommate is cooking. If I'm thirsty, that's too bad, I'll wait. I do no leave anything (food, clean dishes) out unless I am physically present in the kitchen or home alone. I do not prepare food until I have wiped down all surfaces (handles, taps, counter) that I will interact with while preparing my food. I do not allow flour in my kitchen, and do not go into bakeries etc. Before I adopted these policies, I used to get sick a fair bit on a random basis. Now, I am confident that food I prepare in my own shared kitchen is fine, regardless of what my roommates might cook.
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