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Specific Carbohydrate Diet (SCD)


AliB

Recommended Posts

GFLady Newbie

Hi all,

I have been reading a lot on this site and have found some very useful info. I am starting this discussion, because I Need support. My husband and I are on a diet together now, but our main goals are different. (he mainly wants to loose wait, and I want to get better finally) It definitely helps, to have him sharing it, but I also need someone, who share my problems and health issues.

I have done this diet before (Candida diet) with lots of success, but not full success. also, I became undisciplined and started to eat everything, besides the gluten. Of course, consequences came. But I have had enough, so I have put myself on it again. I have been diagnosed with couple of things (like IBS, yeast overgrowth), but I don`t really want to go on different testings. I wish someone told me all the things I need to avoid, I wish there was an overall test for all my questions, but my experience is, that I know my body more than anybody else. And by others experiences, it seems that doctors don`t know everything either.

So I am just researching, on my own, this whole SCD. Is that a bad thing that I don`t go to doctor with it right now? I mean, he told me last year what to do, what to take, etc. I read tons of things. I am pretty much aware of my problems.

An other thing is, that I am sooooooooo afraid of this SCD. It sounds stupid I know, but I love to eat, I have always loved to eat. I feel deprived and every day is a denial. Which, for me, ends up usually in a bad way: I eat something I really shouldn`t. I hate this. But I just can`t stop thinking about food. Has anyone felt like this?

Can we support each other in this diet? (I have to do some more research before I jump in it, but my current diet is pretty close to SCD)

Thanks

GFlady


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AliB Enthusiast

Denial is one of the biggest problems for anyone who has to change their diet for health reasons - mainly I think because, unlike a weight-loss diet, the choice and control is taken away from them.

There are quite a few of us on here who are already following the Specific Carb Diet and really benefitting from it (there is a thread on this section) as it takes gluten-free that stage further for those who cannot digest carbs properly.

The thing to remember is that the only thing that limits us on this diet is our brain! There is such a huge range of foods to choose from within the basic groups of meat, fish, poultry, eggs, fruit, veg, cooked and raw, nuts, raw honey, yogurt and a few other select cheeses, that we are only limited by our imagination.

Constantly, as awareness of the diet and its benefits are spreading, new websites and books are popping up - you only have to Google Specific Carbohydrate Diet or even SCD and loads of stuff comes up - with loads and loads of yummy recipes.

The most important thing with this diet to get your head around in order to be able to follow it is to remember that by eating cleansing foods, you are cleansing your body. The diet is based around foods that do not place any extra burdens on it, that are full of vitality and valuable nutrients and are health-giving.

We actually get quite excited at some of the yummy recipes we find - there is an SCD recipe thread on the 'Recipes' section to post any yummies we want to pass on. This is gluten-free food with, for those who don't get better just on gluten-free alone, a healing protocol. It is good food for all, not just those who are sick and, because it helps the body to start working properly, can actually encourage both weight gain and loss, as needed.

Ali.

Mother of Jibril Enthusiast
An other thing is, that I am sooooooooo afraid of this SCD. It sounds stupid I know, but I love to eat, I have always loved to eat. I feel deprived and every day is a denial. Which, for me, ends up usually in a bad way: I eat something I really shouldn`t. I hate this. But I just can`t stop thinking about food. Has anyone felt like this?

I was also a MAJOR foodie before I started having food intolerance problems. The first thing I cut out of my diet was dairy... it was a miracle to me that I was able to do that. I grew up in Wisconsin! I made some mistakes the first few weeks. There's this co-op in my town that has really good deli food. I went over there on a Sunday to buy some groceries and they had all my favorite brunch foods... jalapeno cheese grits, spinach-feta frittata... I completely forgot about dairy until I was in mid-breakfast. :huh: Within four months I was feeling pretty comfortable with the change... just in time to cut gluten out of my diet. And then two months later I took corn out.

My diet right now is very close to the SCD... lots of vegetables, meat, eggs, a little fruit, goat's milk yogurt (still can't have cow's milk), coconut milk smoothies, nuts, etc... My most challenging food to give up has been chocolate. I'm getting close, but I reserve the right to an occasional treat :P

I think it's really important to go slow and not feel deprived... otherwise, you'll never be able to stick with it. This is not supposed to be a "diet," it's a lifestyle change! Your taste buds will change as you transition from processed foods to natural foods. Honestly. You won't believe how good vegetables can taste. I never noticed a difference between organic and non-organic bananas before, but I had the non-organic version at my parents' house over the holidays and it tasted like chemicals!

It really helps if you like to cook and/or can develop your cooking skills. There are TONS of great recipes on this forum.

rinne Apprentice

Hi and welcome. :)

I would say that I spent a good thirty some years afraid of food because I knew that certain foods triggered ravenous hunger and a full brain stop to any intelligent restraint on my part. I knew wheat and sugar were the two main problems and generally avoided them but when I did eat a piece of toast, it was generally followed by more toast, then cookies, then.....

On the SCD I eat as much as I want of what I want and believe me I can eat lots of my coffee hazelnut ice cream made with whipping cream yogurt! I've been making sandwiches with the almond/egg/dry curd cottage cheese bread and this bread is delicious unlike the many gluten free substitutes. Sunday I made raspberry jam and with the SCD cream cheese on toast I am in heaven. I love the SCD and find great variety in what I can cook and eat.

To give this a context I have been ill for nearly six years now, went on the gluten free diet almost three years ago but only since I started the SCD diet about six weeks ago have I felt any real hope of recovery.

AliB Enthusiast

Ooh, ooh, ooh, Rinne - can you please post your recipe for the Coffee Hazelnut Ice cream on the Recipe thread - Pleeeeease!!!

AliB Enthusiast

Just to say if any of the Mods are reading this - thanks guys for adding the bit about the SCD to the description details of the Other Food Intolerances section - that is great, but the SCD thread has actually disappeared!

It is coming up on the 'last post info' in the main index, but is not in the 'Other Food' index. Where oh where has it gone???

rinne Apprentice
Ooh, ooh, ooh, Rinne - can you please post your recipe for the Coffee Hazelnut Ice cream on the Recipe thread - Pleeeeease!!!

Sure.


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AliB Enthusiast

Thanks all, so glad to see it back!

fig girl Rookie
Do you tolerate seeds, and tomatos? I put together a seed cracker recipe that I like quite well, but I am not handling rougher foods yet so I haven't made it again. You can also google raw food crackers, there are a lot of recipes out there.

Hi Sherry, i haven't tried tomatos yet since being on SCD but will soon. I think I do ok with seeds - the only thing i've been eating w/seeds is green beans and i have been de-seeding them but tried some with seeds a few times about a week or so ago and they seemed to be ok. I'll let you know how i do once i try the tomatos - your crackers sound yummy. I want to make some tomato sauce (your recipe sounds really good) and ketchup using the tomato juice. I sure hope i'm ok with them. I'll google raw food crackers - thanks so much! :)

Michelle

fig girl Rookie
The nomato sauce sounds interesting, what else is in it besides carrots and beets?

Hi Rinne,

Here's the nomato or untomato sauce recipe i found and want to try. It calls for sugar but i figure i'll just add a little honey or no honey and leave out the garlic powder - i would add a little fresh garlic if i tolerated it but unfortunately i don't yet. The only spices i'm using right now is sea salt and fresh black pepper but i may be ok with a little of the oregano and basil.

Open Original Shared Link

I tried a little grated beets with apple cider vinegar tonight and you are right, it is so yummy! :) Love it! Thanks for posting this recipe. I ate it along with dinner. I sure hope it sits well with me. If so, i'll try the nomato sauce. Can't wait! :D

Michelle

mslee Apprentice

just kinda jumping in...this is a long thread

I have been so overwhelmed I am on month 7 of the gluten free diet.

Months 1-3 I was sick as a dog & very weak, lost alot of weight

Months 4-6 I tried to pin point other problem foods because I was still reacting to everything, saw an allergist, saw a hospital dietitian, met with my GI...none are too familiar or believers in food intolerances. But I think it's an issue. I have different reactions to different foods, I kept a food/symptom diary...my Dietitian told me to go ahead & take a break with that, & do I need to see a counselor ? <_< . Starting to feel pretty good with my diet & rotating safe foods.

Months 6-7 Holidays (yay) travel...glutened bad for the first time since gluten-free, just now recovering & starting to feel human again. I was going to SDC for my new years res. & I got boxes & boxes of gluten free granola, cookies, brownies. can't eat them...I know all gluten replacement flours so far make me feel sick...and today I got an e mail from my dietitian .... she would not recommend doing the SDC or GAPS diets right now because it might be too complicated.

Seemed almost there already the only grains I eat are tiny amounts of corn & white rice...& I know they are a problem. My ears itch, I get dizzy, want to eat more & more.

But off any food with ingredients that are man made chemicals, eating some simple processed foods like larabars, or 100% juice. BUT was worried because I can't do: Dairy, Soy, Coconut, Carrageen (sp?), and still not sure about nuts. No anaphylactic reaction but an intolerance maybe? (did have + allergy test to cashews, pecans & coconut)

So what do you guys think? With those food allergies/intolerances is SDC/GAPS doable? How would I get my probiotics? & I don't know what to do with the dietitians advice, she is mainstream medicine...I have dealt with mainstream medicine for 15 years & know they overlook things like candida. She says celiac is caused by autoimmune reaction to gluten, not caused by gut imbalance. (I am gluten free &...) Seems balancing the gut should be my goal at this point.

There's my rant, I just couldn't take anymore I'm trying so hard & still developing new intolerances...I don't know what to do.

fig girl Rookie
Hi all,

I have been reading a lot on this site and have found some very useful info. I am starting this discussion, because I Need support. My husband and I are on a diet together now, but our main goals are different. (he mainly wants to loose wait, and I want to get better finally) It definitely helps, to have him sharing it, but I also need someone, who share my problems and health issues.

I have done this diet before (Candida diet) with lots of success, but not full success. also, I became undisciplined and started to eat everything, besides the gluten. Of course, consequences came. But I have had enough, so I have put myself on it again. I have been diagnosed with couple of things (like IBS, yeast overgrowth), but I don`t really want to go on different testings. I wish someone told me all the things I need to avoid, I wish there was an overall test for all my questions, but my experience is, that I know my body more than anybody else. And by others experiences, it seems that doctors don`t know everything either.

So I am just researching, on my own, this whole SCD. Is that a bad thing that I don`t go to doctor with it right now? I mean, he told me last year what to do, what to take, etc. I read tons of things. I am pretty much aware of my problems.

An other thing is, that I am sooooooooo afraid of this SCD. It sounds stupid I know, but I love to eat, I have always loved to eat. I feel deprived and every day is a denial. Which, for me, ends up usually in a bad way: I eat something I really shouldn`t. I hate this. But I just can`t stop thinking about food. Has anyone felt like this?

Can we support each other in this diet? (I have to do some more research before I jump in it, but my current diet is pretty close to SCD)

Thanks

GFlady

Hi and welcome GFLady,

I was like you and had already cut out some things that i figured out bothered me and then had read a few posts about the SCD on here and started reading up on it and got the book from the library and thought I'd give it a try. I'm one of those that is having to take it really slow in adding SCD legal foods but i felt so much better very quickly after starting the SCD. I'm very thankful for this diet and site and everyone on here for being so welcoming and helpful. I love to eat too and actually can eat a whole lot more of the SCD foods than i've ever been able to eat (gluten-free or non-gluten-free) and i love that! :D I haven't told my Dr. i'm on SCD yet - i haven't seen her since starting it but will next week at my appt. I'm pretty sure she'll be supportive of it especially since i'm feeling so much better.

That's wonderful your husband is doing a diet with you. I wish my husband would do the SCD - i think he'd be amazed at how much better he would feel. Maybe once i'm eating more of a variety of food he'll try some of the recipes i make. I hope you have great success if you decide to try SCD!

fig girl Rookie
just kinda jumping in...this is a long thread

I have been so overwhelmed I am on month 7 of the gluten free diet.

Months 1-3 I was sick as a dog & very weak, lost alot of weight

Months 4-6 I tried to pin point other problem foods because I was still reacting to everything, saw an allergist, saw a hospital dietitian, met with my GI...none are too familiar or believers in food intolerances. But I think it's an issue. I have different reactions to different foods, I kept a food/symptom diary...my Dietitian told me to go ahead & take a break with that, & do I need to see a counselor ? <_< . Starting to feel pretty good with my diet & rotating safe foods.

Months 6-7 Holidays (yay) travel...glutened bad for the first time since gluten-free, just now recovering & starting to feel human again. I was going to SDC for my new years res. & I got boxes & boxes of gluten free granola, cookies, brownies. can't eat them...I know all gluten replacement flours so far make me feel sick...and today I got an e mail from my dietitian .... she would not recommend doing the SDC or GAPS diets right now because it might be too complicated.

Seemed almost there already the only grains I eat are tiny amounts of corn & white rice...& I know they are a problem. My ears itch, I get dizzy, want to eat more & more.

But off any food with ingredients that are man made chemicals, eating some simple processed foods like larabars, or 100% juice. BUT was worried because I can't do: Dairy, Soy, Coconut, Carrageen (sp?), and still not sure about nuts. No anaphylactic reaction but an intolerance maybe? (did have + allergy test to cashews, pecans & coconut)

So what do you guys think? With those food allergies/intolerances is SDC/GAPS doable? How would I get my probiotics? & I don't know what to do with the dietitians advice, she is mainstream medicine...I have dealt with mainstream medicine for 15 years & know they overlook things like candida. She says celiac is caused by autoimmune reaction to gluten, not caused by gut imbalance. (I am gluten free &...) Seems balancing the gut should be my goal at this point.

There's my rant, I just couldn't take anymore I'm trying so hard & still developing new intolerances...I don't know what to do.

Hi and welcome mslee,

I've only been on SCD for 3 months but before starting it i had been gluten free for about 8 months and started having joint pain, fatigue, brain fog, etc. again. I felt good initially on the gluten free diet but never felt as good as i do on the SCD. The recipes, especially the introduction foods, are not complicated to make - they're actually quite easy and i like that there's few ingredients. The first week or two i had to get used to being in the kitchen a lot more but it's much easier now and i'm more organized and feel much more comfortable making SCD meals. It gets better and easier and having more energy helps. It's been easier for me to be able to tell what foods i can and can't tolerate being on the SCD also. It's slow-go for me but i can tell i'm healing and feel so much better. I have a lot of intolerances also but feel as i heal more i'll be able to eat more and more SCD foods. It's definitely taught me to have more patience! :D

The SCD yogurt is an excellent way to get probiotics and i use goat milk for mine - i had cut out dairy before starting SCD but the goat milk yogurt i do ok with. I'm also taking probiotics in pill form (one in am and one before bed) which helps me too. Good luck if you decide to try the diet and i hope it'll help you feel much better.

Michelle

mftnchn Explorer

Welcome GFlady and MsLee!

I agree that this diet has been very satisfying, much much better than when I have done low carb in the past. There is an adjustment process. Some have been able to jump right in to the full SCD allowed food list. Others of us seem to truly need to do the intro and follow a very slow adding of foods.

At first I did a lot of tastes of honey, I didn't restrict myself on using it. It truly helped get through the initial adjustment.

Probiotics: check out www.pecanbread.com. This site discusses SCD and has lots of info for autistic kids on this diet many of whom are very sensitive to dairy. It has some alternatives and how to make them. You can also find SCD safe and dairy free probiotics and take those.

When and if you decide to start, I'd suggest doing some preparation, get yourself some intro foods like soup and jello and whatever made up ahead of time. The first week can be uncomfortable with die off responses. I had huge shifts in BMs and lots of fatigue and flue like responses. After a week things got better fast.

Since this thread is long, feel free to start a new thread asking for help with your initial adjustment to the diet. You might also post here that you are doing that to give us a heads up so we don't miss your post. Also feel free to jump right in here.

mftnchn Explorer

MsLee,

You might find it quite helpful to read the www.pecanbread.com site and the stories there. Many of the children on SCD had to be extremely restricted on the diet initially, but make progress clearly. If children can survive that, I would think it would be okay for you, at least for several weeks until you have a chance to decide if this will truly help you.

Nuts are advanced foods so it might be wise to wait to start those, but if you don't have diarrhea you can try adding one piece of almond flour muffins once a day. They are super yummy and satisfying. I'd wait until after intro though. It sounds to me like doing intro will be important for you.

also, to you and GFlady, the homemade goat yogurt can be added in starting with a 1/4 teaspoon or less, like with the sensitive kids.

Glad you are posting here and hope we can help.

mftnchn Explorer

Michelle, I may not have time this week but if I forget, ask me again for my seed cracker recipe and I'll post it on the other thread. It isn't quite perfected yet, but already pretty tasty. I tried to figure out the recipe after I bought some Pesto seed crackers at my doctor's office. They have a basket with these, maybe a patient that has started a little cottage business making this Gluten-free Casein-free treat. They were wonderful!!!

GFLady Newbie

You guys are all so very nice, and helpful! Seriously!! THANK YOU!!! I will do the SCD, tadaaaam!!! I have decided. But the question is now: when will I start. Well, I guess I will do some more research, and make sure I have some good recipes. Yes, it seems, that I will not be without good food completely!!

However, I think my SCD will be sticter than the usual. You guys talked about it too. So you say that first start out slow and then add more foods.,right? Some of us are more sensitive and I`ll have to slowly see what can I have. I don`t think I can do honey, or dairy, or lots of fruits, I don`t think. But I`ll try the goat milk yogurt, I love yogurt. I will still be reading these posts, and I am pretty sure I`ll need some more help later on. But for now, I am heading to the library, find THE book, and get educated!! :-)

(BTW, if I am talking nonsense here or make grammatic mistakes, please know, I am a Hungarian, married to an American, and I don`t speak perfect English. :-)

Thanks for all of y`all for your help!

GFLady ( I think I`ll change my name to SCDLady, hm?? lol)

mftnchn Explorer

Your English is beautiful, no worries! The book should be very helpful preparation. I chose to follow the chart posted on www.pecanbread.com in terms of which foods are usually easier to digest; there are stages posted there.

The diet doesn't require the stages, but its just a helpful guideline if you are sensitive. I'd try to do 3-5 days of intro to start. Hopefully at least some of those foods will be safe for you.

Just a note, Elaine in BTVC says if you have a lot of candida you might need to be very careful with honey. I thought that would cause me problems but it didn't at all! Once I got the disaccharides out, I did okay. The first two weeks I had a lot of cravings. Lots of others have mentioned that too. I just did a little honey or honey sweetened something when that happened. By the third week I could cut way down on the honey and not have cravings.

The bottom line, if something bothers you, don't eat it and then try it again in about another month. Sometimes it is also the brand or processing of something, and another one works. Just post and hopefully we can help.

GFLady Newbie

wooooow!! This is so great! This website, pecanbread, that you mentioned is AWESOME!!! I am so thrilled, I am actually excited about this new healing! I want to get better so much! So anyone, who has questions, or not familiar with SCD, READ this!!! It is VERY helpful!!

Thank you for recommending it!

GFLady

rinne Apprentice
.....

Open Original Shared Link

I tried a little grated beets with apple cider vinegar tonight and you are right, it is so yummy! :) Love it! Thanks for posting this recipe. I ate it along with dinner. I sure hope it sits well with me. If so, i'll try the nomato sauce. Can't wait! :D

Michelle

Thanks for the link and I am delighted you enjoyed the beets, I hope they agree with you. I find that including them is helping with my digestion.

Was it on this thread that someone was talking about the burp test with baking soda? I can't remember where I read it but I tried it and didn't burp, if anyone knows what that means please let me know.

mslee Apprentice

Thank You!

I am excited about this diet the food sounds so good! Muffins??? omg yum!

I pretty much went cold turkey gluten-free & grain free. no gluten-free grain goodies for me!

So good advice, be prepared & do the intro that should help with the intolerances I hope.

Have tried goat cheese & had a bad reaction :( ...just last week tried some glorious gobs of Brie cheese & that was really painful. Had read that is one of the safer cheeses for the GAPS diet but I bet I dove in WAY too soon.

So will try the intro.

Just need to be prepared.

A couple things, right now everything make me itchy especially this rash i get in my ears but mostly around my face & neck..when I cook the steam makes it worse...oil seems to make it worse, pork, dairy (if i make something for hubby), nuts, pepper (red & black)... and making broth from scratch a couple times that made me itchy & dizzy. Is that just part of all this, could it cadidia, or maybe just my body being very high in antibodies (new allergies)???

What about GAPS vs SCD any feelings about that?

Now how to break it to my dietician? :lol:

Thank you sooooo much!!!

fig girl Rookie
Michelle, I may not have time this week but if I forget, ask me again for my seed cracker recipe and I'll post it on the other thread. It isn't quite perfected yet, but already pretty tasty. I tried to figure out the recipe after I bought some Pesto seed crackers at my doctor's office. They have a basket with these, maybe a patient that has started a little cottage business making this Gluten-free Casein-free treat. They were wonderful!!!

Ok i will, thanks Sherry. They sound wonderful! How neat that you could buy those at your Dr's office. I think I may try either the SCD ketchup or tomato sauce this weekend. I made the carrot cake tonight on page 127 of "Breaking the Vicious Cycle". I used coconut flour instead of almond flour and used 6 Tablespoons of melted gelatin for the 2 eggs, used coconut oil instead of butter, only about 1 1/2 T honey and no raisins, walnuts or cinnamon. I used 1 cup of the coconut flour which was too much but it was very, very tasty. I ate it with a spoon and spooned some into my yogurt...yum, it was so good. I tried a little of the coconut flour a couple of days ago and it didn't do too bad so i thought i'd try it again in this recipe.....i've been wanting to try this recipe since it only calls for 2 eggs and i figured i could use gelatin instead.

My symptoms (i think) are getting milder when i do react to something so hopefully things are getting better! :)

fig girl Rookie
Thanks for the link and I am delighted you enjoyed the beets, I hope they agree with you. I find that including them is helping with my digestion.

Was it on this thread that someone was talking about the burp test with baking soda? I can't remember where I read it but I tried it and didn't burp, if anyone knows what that means please let me know.

Well, unfortunately i did react to the beets and apple cider vinegar but the good news is my symptoms seem to be milder than they used to be. I had a little pain and gas before bed and felt a little bloated but not as bad as i have felt about a month ago when reacting to foods and the symptoms don't seem to last as long. So i was bummed because they were so good but I will try them again after a while. I think i will try steaming the beets and see how they do cooked and without the acv.

That's funny, I saw the thread about the burp test too about a week ago and tried it too! I didn't burp within 5 min. of drinking it either which it said if you don't then you don't produce enough acid and would need to supplement with betaine hcl. I think I burped about 15 - 20 min. after drinking it. So i probably would benefit with the beets and acv once i tolerate them or try supplementing with betaine hcl.

AliB Enthusiast
Thank You!

I am excited about this diet the food sounds so good! Muffins??? omg yum!

I pretty much went cold turkey gluten-free & grain free. no gluten-free grain goodies for me!

So good advice, be prepared & do the intro that should help with the intolerances I hope.

Have tried goat cheese & had a bad reaction :( ...just last week tried some glorious gobs of Brie cheese & that was really painful. Had read that is one of the safer cheeses for the GAPS diet but I bet I dove in WAY too soon.

So will try the intro.

Just need to be prepared.

A couple things, right now everything make me itchy especially this rash i get in my ears but mostly around my face & neck..when I cook the steam makes it worse...oil seems to make it worse, pork, dairy (if i make something for hubby), nuts, pepper (red & black)... and making broth from scratch a couple times that made me itchy & dizzy. Is that just part of all this, could it cadidia, or maybe just my body being very high in antibodies (new allergies)???

What about GAPS vs SCD any feelings about that?

Now how to break it to my dietician? :lol:

Thank you sooooo much!!!

Hi MsLee. Welcome to the thread.

The GAPS diet is the SCD in essence.

I think you need to take things a bit more gently. A damaged gut cannot cope with too much to start with. Dairy is difficult for a lot as damaged villi cannot produce the lactase needed for its digestion.

It is best to start at the beginning and work through - even though there are a lot of 'legal' foods on the diet, some of them may still cause issues to start with. I have been on the diet for 10 months and although there is a lot more I can eat now, I still have problems digesting some foods like pork and occasionally nuts and have only recently been able to tolerate a little dairy. Some get better quicker (especially if they are very disciplined on the diet) and others slower but there are very few who don't improve in some way on the diet.

One thing I have noticed with the chicken soup is that I have to make sure the chicken is organic otherwise I find that boiling the bones for the soup seems to draw things out that affect me - both me and my hubby get a lot of mucous for an hour or two after eating chicken soup if it wasn't organic although the freshly roasted meat seems fine.

Organic everything is better (and home-grown better still!) if you are able to get hold of it and can afford it.

Candida and Leaky gut may well be a problem but as you heal that should improve. When I started there was little I could eat, but my diet is a lot broader now.

AliB Enthusiast
wooooow!! This is so great! This website, pecanbread, that you mentioned is AWESOME!!! I am so thrilled, I am actually excited about this new healing! I want to get better so much! So anyone, who has questions, or not familiar with SCD, READ this!!! It is VERY helpful!!

Thank you for recommending it!

GFLady

Hi GFLady. Welcome to the thread. The SCD is such a ray of hope to those of us who don't get better just on gluten-free.

We are all here to support each other in our 'journey'. I hope you enjoy the ride!

Ali.

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    • trents
      Welcome to the forum, @Cathijean90! I went 13 years from the first laboratory evidence of celiac disease onset before I was diagnosed. But there were symptoms of celiac disease many years before that like a lot of gas. The first laboratory evidence was a rejected Red Cross blood donation because of elevated liver enzymes. They assume you have hepatitis if your liver enzymes are elevated. But I was checked for all varieties of hepatitis and that wasn't it. Liver enzymes continued to slowly creep up for another 13 years and my PCP tested me for a lot of stuff and it was all negative. He ran out of ideas. By that time, iron stores were dropping as was albumin and total protein. Finally, I took it upon myself to schedule an appointment with a GI doc and the first thing he did was test me for celiac disease. I was positive of course. After three months of gluten free eating the liver enzymes were back in normal range. That was back in about 1992. Your story and mine are more typical than not. I think the average time to diagnosis from the onset of symptoms and initial investigation into causes for symptom is about 10 years. Things are improving as there is more general awareness in the medical community about celiac disease than there used to be years ago. The risk of small bowel lymphoma in the celiac population is 4x that of the general population. That's the bad news is.  The good news is, it's still pretty rare as a whole. Yes, absolutely! You can expect substantial healing even after all these years if you begin to observe a strict gluten free diet. Take heart! But I have one question. What exactly did the paperwork from 15 years ago say about your having celiac disease? Was it a test result? Was it an official diagnosis? Can you share the specifics please? If you have any celiac blood antibody test results could you post them, along with the reference ranges for each test? Did you have an endoscopy/biopsy to confirm the blood test results?
    • Cathijean90
      I’ve just learned that I had been diagnosed with celiac and didn’t even know. I found it on paperwork from 15 years ago. No idea how this was missed by every doctor I’ve seen after the fact. I’m sitting here in tears because I have really awful symptoms that have been pushed off for years onto other medical conditions. My teeth are now ruined from vomiting, I have horrible rashes on my hands, I’ve lost a lot of weight, I’m always in pain, I haven’t had a period in about 8-9 months. I’m so scared. I have children and I saw it can cause cancer, infertility, heart and liver problems😭 I’ve been in my room crying for the last 20minutes praying. This going untreated for so long has me feeling like I’m ruined and it’s going to take me away from my babies. I found this site googling and I don’t know really what has me posting this besides wanting to hear from others that went a long time with symptoms but still didn’t know to quit gluten. I’m quitting today, I won’t touch gluten ever again and I’m making an appointment somewhere to get checked for everything that could be damaged. Is this an automatic sentence for cancer and heart/liver damage after all these symptoms and years? Is there still a good chance that quitting gluten and being proactive from here on out that I’ll be okay? That I could still heal myself and possibly have more children? Has anyone had it left untreated for this amount of time and not had cancer, heart, fertility issues or liver problems that couldn’t be fixed? I’m sure I sound insane but my anxiety is through the roof. I don’t wanna die 😭 I don’t want something taking me from my babies. I’d gladly take anyone’s advice or hear your story of how long you had it before being diagnosed and if you’re still okay? 
    • trents
      Genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out and also to establish the potential to develop celiac disease. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop it. To develop celiac disease when you have the genetic potential also requires some kind of trigger to turn the latent genes "on", as it were. The trigger can be a lot of things and is the big mystery component of the celiac disease puzzle at this point in time with regard to the state of our knowledge.  Your IGA serum score would seem to indicate you are not IGA deficient and your tTG-IGA score looks to be in the normal range but in the future please include the reference ranges for negative vs. positive because different labs used different reference ranges. There is no industry standard.
    • Scott Adams
      Since nearly 40% of the population have the genes for celiac disease, but only ~1% end up getting it, a genetic test will only tell you that it is possible that you could one day get celiac disease, it would not be able to tell whether you currently have it or not.
    • KDeL
      so much to it.  the genetic testing will help if i don’t have it right? If theres no gene found then I definitely don’t have celiac?  I guess genetic testing, plus ruling out h.pylori, plus gluten challenge will be a good way to confirm yes or no for celiac. 
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