Question for all who went gluten-free or SCD

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Squattie
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Date Joined Jul 2005
Total Posts : 669
   Posted 8/31/2008 6:40 AM (GMT -7)   
How long did it take you to notice any difference?

Also, for those who went gluten-free and found it didn't make any difference: were you also taking in other forms of sugar or starches at the same time? or dairy? What made you feel it didn't work for you?
.....Squattie


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/31/2008 8:33 AM (GMT -7)   
I went gluten-free for a while, and it worked for a while. This was just prior to my Crohn's diagnosis and I thought I probably had celiac disease so I'm thinking a lot of the alleviation the gluten-free diet did initially was more psychological. It just stopped working for me, and I ended up becoming more ill later on. Ah well, to each their own.

As for the SCD diet. I don't strictly follow it since I do consume gluten products, but I do use it as a sort of guideline and I noticed a difference after about a week actually. It was small of course, but I can tell you that I feel a lot better now that I've modified my diet. I have yet to reintroduce fresh fruits or vegetables, but I can tolerate vegetables now that come in canned soup or have been cooked thoroughly. I can also eat certain fruit like peaches as long as the skin is gone. Definitely give the diet a try at least. I think most people do and then make their own modifications to find the right routine for them.
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 8/31/2008 8:33 AM (GMT -7)   
i was already doing the makers diet when i started the scd and i was already eating somewhat gluten free, but not 100%. i noticed changes within like 2-3 days on the makers diet. i think the biggest thing you'll experience is a headache that wont quit for a few days and fatigue. this is because with no grains, as prescribed by the scd, your blood sugars are crashing and needing to rebalance and you are not getting the regular dose of sugar your body is used to and thus must readjust to a new normal. all of us on both the scd and makers had to suffer through this, but it is good. it requires will power and self control, but if you can stick it out you'll be better for it imho. best of luck!
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


yaniv_naced
Regular Member


Date Joined Sep 2007
Total Posts : 134
   Posted 8/31/2008 8:55 AM (GMT -7)   
A couple of you mentioned he "SCD" - what is it and where can find out about it? Is it better than the Maker's diet?
I have a diagnosis of possible proctitis.

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 8/31/2008 9:24 AM (GMT -7)   
I started the maker's diet (similar to SCD) back in 06 or 07 and I noticed a difference within a few days. Mainly my diarrhea went from 30x a day down to 5-20x a day.
 
I then added probiotics which helped with bloating and some pain. Recently, I started digestive enzymes and I actually have less pain after eating. I can't wait to see how I do after pregnancy with my new regime.
 
In regards to gluten free, I've read that a lot of people who are gluten intolerant are able to tolerate sourdough bread. I recently added sourdough white bread to my diet and I do very well with it. It is also better for diabetics because the glucose is released more slower in the blood. If I eat any regular grains without sourdough it hurts my tummy severely. I can also tolerate soaked grains quite well too and make lots of soaked wheat pancakes with real maple syprup. I soak 2c org. whole wheat overnight in 1c filtered water, then add an egg, baking powder, vanilla, pinch of sea salt, and fry in butter like pancakes.  Yummy.
 
Best wishes!
 

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/31/2008 9:34 AM (GMT -7)   
To yaniv_naced:
The SCD is the Specific Carbohydrate Diet. There is a book you can buy called "Breaking the Vicious Cycle" by Elaine Gatschall which explains what the diet is, how it works, and so on and then also gives you a pretty substantial amount of good recipes. I recommend checking it out. There a few websites you can look at as well:

http://www.breakingtheviciouscycle.info/

http://www.scdiet.org/
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 8/31/2008 1:08 PM (GMT -7)   
everyones different when it comes to changes. Some get worse before they get better, some it may take months or longer..For me after die-off it was about two weeks before i had a positive change.
SCD since 01, remission since 01, occasional Arby's breaks :)


kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 8/31/2008 2:58 PM (GMT -7)   
Some people experience a die-off, not just because of their body adjusting to sugars, etc. but because their problem had a fungal etiology. As the fungus is dying off when you starve it while following the SCD or another anti-fungal diet, the toxins are being released and expelled. You may have this "Herxheimer response" , which means you will feel worse before you feel better. I was tired, achy, joint pain, major headache. I had ulcerative colitis for 8 years before I experimented with an antifungal diet, and amazingly got better within a few weeks. You have to be vigilant with teh diet...no cheating...no flour, sugar, yeast, processed foods. I'm now "well" with no symptoms or needing meds. I stay this way by following a modified form of the experimental diet. More 'limiting' those foods and not 'restricting' myself. The experimental anti-fungal diet I followed can be found on www.knowthecause.com under the FAQ section, if you are interested. Not as strict as the SCD. (Were you ever on antibiotics before your symptoms started?) 

Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 8/31/2008 3:11 PM (GMT -7)   
I did SCD and noticed an immediate difference. Within 4 days the bleeding and gas and cramping had stopped. Within 7 days I was having slightly formed stool (had been having nothing but D). I did it for 6 months and never had a die-off/relapse period.

Squattie
Veteran Member


Date Joined Jul 2005
Total Posts : 669
   Posted 9/1/2008 6:57 AM (GMT -7)   
Thanks folks,

I'm not sure what I'm doing. I only weigh 84 lbs. and restricting my diet is a scary thought. I am eating millet (which is gluten free) and find that I cannot do a lot of fruits. I think I have a yeast thingy. So, calories are important to me. But I know carbs and sugar bother me.

I can't do the protein drinks because I cannot tolerate whey, soy or dairy. So I do eat avocados (which I'm getting sick of), almond butter, plain protein...chicken, turkey, etc., veggies. And I do have half a banana in my millet cereal for breakfast. I occasionally eat oatmeal. And I can do eggs.

I take enzymes, coconut oil, fish oil, probiotics, a multi. My doctor says my weight will come back once my inflammation goes down. I have zip for appetite. I'm also taking asacol and entocort (a six week course).

Any tips for weight gain without all the things I can't have would be greatly appreciated.
.....Squattie


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 9/1/2008 7:10 AM (GMT -7)   
I went GF and didn't notice anything until 3 weeks and then felt much much better, and have for 7 months. I didn't change anything else in my diet, but I have found that the fresh fruits and veggies I couldn't eat when I was sick I now eat just fine, so my diet is actually much better without the gluten. I luckily can have milk and soy. Squattie, it sounds like you need a dietician to help you find things to eat. take care. yp
49 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 9/1/2008 12:34 PM (GMT -7)   
squattie -

for weight gain, you need eat more. i suggest 4 small meals per day with snacks. increase your calorie content to like 3,000 per day (no this wont make you fat if you eat and exercise). sounds like you eat a lot of nutrient dense food, which is good, but to gain weight you need more calorie dense food. exercise will increase your appetite (and metabolism too, but since you're eating more you shouldnt lose weight and actually gain weight). soy isnt a health food so dont cry over not being able to eat it. you're better off not eating it. protein and carbs both have 4 calories per gram. fat has 9 calories per gram. so if carbs upset your system, increase your fat content (make sure it is good fat) to get more calories. dont worry about not being able to eat protein shakes/whey. that much protein will further acidify your system and it doesnt do much good if you arent working out religiously. mangos and bananas are the best fruits for weight gain. try sprouted grain bread products and cereals. they may not be completely gluten free, but i tolerate them very well and actually prefer them to gluten free. you can use quinoa as a rice substitute. it cooks very similar and has the advantage of being the only complete protein that is not animal based! i also suggest anaerobic exercise over aerobic exercise, especially for weight gain.

best of luck to you.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


Squattie
Veteran Member


Date Joined Jul 2005
Total Posts : 669
   Posted 9/1/2008 2:09 PM (GMT -7)   
Harry............marry me!
.....Squattie


Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 9/1/2008 10:03 PM (GMT -7)   
Squattie, I was diag Crohn's in 2002 at 42yrs old after 2 years of praying to die due to various autoimmune symptoms and arthritic symptoms that began around 1990 when I had a UTI requiring 9 day hospital stay and I was givin roughly 19 bags of misc IV antibotics. After my Diag. I found/followed the SCD and in 4 days most joint/soft tissue pain was gone. I had some AI (autoimmune) symptoms, skin eruptions and such for about a week followed by much clearer thinking and a great deal less "brain fog", also no more GI symptoms.
I have followed that up with a modified version of the SCD, adding things slowly and keeping track of what I ate and how I felt, allowing 10 days between additions. I wish I had access to the below web site at that time, it's kinda cool. 4-5 days a week I feel much like I did in my 20's and 30's and the remaining time I still feel better than I have after the 1990 hospital stay. It's a lot of work and trouble to eat this way, but I CAN work and look forward to every day and I can understand everything I read and learn again. Feeling crazy and dumbed down was worse than the pain for me. I have many customers at my job and a nephew following the SCD and doing a better job at it than I do, most had many more gut issues and symptoms than I had, some are post surgical, but they all tell me the only regret they have is not knowing or following the diet sooner.
Many of the things Harry eats are things I handled well when I added to the SCD. BUT don't run off and marry the first guy you find who knows how to eat.As fast as we are being Diag. another one will be along in 10minutes LOL-Best Wishes to all of you either way.(Sorry Harry)   smilewinkgrin     
 
       nomorecrohns.com/


              Never go faster than your guardian angel can fly!                  
     Be Patient And Tough, Someday This Pain Will Be Useful To You 
 
 Crohn's for life, symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reactive Arthritis-explains sooo much. Great control on SCD (when I'm good) and I get by with a lotta help from my friends!
                                                Margie11

Post Edited (Margie11) : 12/21/2008 11:39:21 PM (GMT-7)


Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 9/1/2008 10:09 PM (GMT -7)   
Oh, PS I have good luck controling D, wartery D and quick transit times (15-30 min between food and trip to the little room) when I mess up with very ripe organic bananas Grocery store "Gassed" ones do not work for this.
Crohn's for life, just met first cousin who suffers from Reiters-explains sooo much. Great control on SCD (when I'm good) and I get by with a lotta help from my friends!
 
                                              Margie11


miguelblanco
Regular Member


Date Joined Dec 2007
Total Posts : 131
   Posted 9/2/2008 11:12 AM (GMT -7)   
There's been such good discussion here, I am hoping to add on rather than start a new thread.
I saw a naturopath on Friday. He seems convinced I need to go on the SCD diet based on my symptoms. I was already diagnosed with Celiac years ago and have been gluten free for many years.

I have a few questions about the SCD diet and if it is feasible for me. If anyone can tackle any of these, that would be great.

1. Food allergies; specifically- tree nuts and fish/seafood. I noticed many recipes use almond or other types of nut flours for the base. Is it even feasible for someone with these allergies to try this diet? Seems about 50% of the foods are gone right off the bat if one cannot eat nuts or fish/seafood.

2. All I see is yogurt this, yogurt that. Is everyone on the SCD really eating this much yogurt all the time?

3. I have been losing weight lately. Naturopath claims I will GAIN weight on this diet. Is this true?

4. What are some good resources for recipes/diet? I have the BTVC book already and the recipes are a "no-go" for the most part.

Thanks, I am so frustrated and confused right now. I have cut out so much of my diet already, and I'm so tired and in pain, I don't know if I have it in me to take on this diet right now.
Type I Diabetes- 29 yrs. (MiniMed Insulin Pump)
Celiac Disease- 8 yrs.
Crohn's Disease- (Nov. '06)
No meds at this time. (Don't agree with me.)


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 9/2/2008 11:24 AM (GMT -7)   
CrazyHarry said...
squattie -

for weight gain, you need eat more. i suggest 4 small meals per day with snacks. increase your calorie content to like 3,000 per day (no this wont make you fat if you eat and exercise). sounds like you eat a lot of nutrient dense food, which is good, but to gain weight you need more calorie dense food. exercise will increase your appetite (and metabolism too, but since you're eating more you shouldnt lose weight and actually gain weight). soy isnt a health food so dont cry over not being able to eat it. you're better off not eating it. protein and carbs both have 4 calories per gram. fat has 9 calories per gram. so if carbs upset your system, increase your fat content (make sure it is good fat) to get more calories. dont worry about not being able to eat protein shakes/whey. that much protein will further acidify your system and it doesnt do much good if you arent working out religiously. mangos and bananas are the best fruits for weight gain. try sprouted grain bread products and cereals. they may not be completely gluten free, but i tolerate them very well and actually prefer them to gluten free. you can use quinoa as a rice substitute. it cooks very similar and has the advantage of being the only complete protein that is not animal based! i also suggest anaerobic exercise over aerobic exercise, especially for weight gain.

best of luck to you.

Harry, I have a hard time getting to 2000 calories, never mind 3000.  I'm not on the Makers diet but I do avoid Gluten, dairy and soy like you.  Can you give a sample meal plan consisting of 3,000 calories?
Dx'ed in 1999. No surgeries.

Current meds: 75 mg 6MP. 3mg prednisone (trying to taper). Udo's Choice Probiotics (30 billion).


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 9/2/2008 3:59 PM (GMT -7)   
rider -

i'd love to, but i dont keep track of my food in that way so i cant help. i wish i could cos i am trying to put on weight (i've been stuck at 146-148 lbs this entire calendar year no matter how i tweak things). i pay attention more to portion size instead of counting calories. i've never believed in counting calories. it is totally misleading imho. the way i eat now (makers with some scd thrown in) i never feel satiated after a meal. i have to keep a mental note of how much i am eating during a meal and then stop cos if i over do it i get bloated and feel sick for the rest of the day = not fun. so i try to eat every few hours. i'm actually going to be doing what i suggested in this thread - doing 4 meals with snacks instead of 3 with snacks. my biggest problem is that i dont feel it is healthy for me to carb cycle as that is a good way to gain weight. i find i am much healthier with minimal grains/sugars.

one can take calorie/weight gainer shakes. i dont cos i'd rather not risk consuming empty calories - consuming calories just to consume calories. i've been told bcaa's are another thing to take to naturally increase muscle growth, but a good friend of mine in the know said not to waste your money. creatine is another way to put on muscle, but he told me with my delicate system and the fact that you have to take it with high carb/high glycemic food for it work it probably isnt the best for me. plus it puts a load on your kidneys which with all the meds we take for this disease we dont need to be taxing the kidneys any more. so that leaves exercise and eating. and with eating it becomes simply eating more. but i still believe the trick is not eating empty calories. i'd love to find a trainer who knows about nutrition as well and is familiar with digestive disorders, like crohn's, whom i can work with. that would be cool. but until i do i have to do it myself and this is a slow learning process as i have to use myself as the guinea pig.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 9/2/2008 4:42 PM (GMT -7)   
As far as makers diet vs SCD I was diag. prior to the Makers Diet book being published, so I found the BTVC book first, then read Jordan Ruben's book "Restoring Your Digestive health" It is a good book, and in one of the first few chapters he states that the SCD diet works for about 97% of Chron's patients, so, I tried the SCD and later adapted it as I posted above. Here are some SCD web site names. Many have more info, some have info left by the books arthur on various msg. boards and list serves.

http://crohns-sanity.org/forum/index.php?topic=7924.0

www.pecanbread.com

www.scdiet.org

www.breakingtheviciouscycle.info

www.scdrecipe.com

www.healingcrow.com/dietsmain/scd/scd

www.scdiet.net/
Crohn's for life, just met first cousin who suffers from Reiters-explains sooo much. Great control on SCD (when I'm good) and I get by with a lotta help from my friends!
 
                                              Margie11


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 9/2/2008 9:13 PM (GMT -7)   
miguelblanco said...

1. Food allergies; specifically- tree nuts and fish/seafood. I noticed many recipes use almond or other types of nut flours for the base. Is it even feasible for someone with these allergies to try this diet? Seems about 50% of the foods are gone right off the bat if one cannot eat nuts or fish/seafood.

2. All I see is yogurt this, yogurt that. Is everyone on the SCD really eating this much yogurt all the time?

3. I have been losing weight lately. Naturopath claims I will GAIN weight on this diet. Is this true?

4. What are some good resources for recipes/diet? I have the BTVC book already and the recipes are a "no-go" for the most part.

Thanks, I am so frustrated and confused right now. I have cut out so much of my diet already, and I'm so tired and in pain, I don't know if I have it in me to take on this diet right now.


Hi miguelblanco, I will attempt to take a stab at your questions. I see Margie11 answered the resources question. I will only add that I love the book "Recipes for the Specific Carbohydrate Diet" by Raman Prasad. There are several other SCD compliant cookbooks on the market, though!

Even with your nut and fish/seafood allergy you can do this diet! You may be a bit limited, but not terribly. Since you said you are in pain, possibly you should start with the intro diet? (pg. 69 in your book) It is very limited, but mentions fish only once (can you eat freshwater fish?) for which chicken can be substituted, and there are no nuts in the intro diet. If I understand correctly, the almond flour should only be used sparingly (if at all) until healing has happened. Maybe then you could introduce a tiny bit ever so slowly? If not, try sprouted grain flour or spelt flour as a substitute? (though not SCD legal) Just some thoughts....

Yes, we really eat that much yogurt! I make 2 liters every other day and can barely keep up--but all 4 family members eat it. I make sure my son eats at least one cup daily. He usually has it in a smoothie sweetened with honey. It's really very good!

As for gaining weight, I can only speak for my son. He was under weight and gained on this diet. He is a competitive swimmer, so calories are critical! He has simply learned that his carbs have to be very different from his team mates' carbs!

I hope this helps a tiny bit and I hope you feel better really soon!
Mom to 16 year old boy diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3, a good multivitamin, SCD legal yogurt, weaning off Asacol.
Started The Maker's Diet in Sept. '07. Gradually learning/using more SCD recipes, too! (cooking challenged)


Osprey101
Regular Member


Date Joined Apr 2008
Total Posts : 227
   Posted 9/2/2008 11:15 PM (GMT -7)   
For me, it's about 3 days from pain-to-relief on the SCD. I started eating GF when I thought I had celiac disease; my pain went away for the most part and the D stopped for the first time in 9 weeks. Several months later, I was diagnosed with Crohn's (by endoscopy and biopsy), and I ate "normally" for a week. The PAIN and the BLEEDING- it was agony. So, I started eating a gluten-free diet once again- relief (as always) came in 72 hours.

So, then, the doc says- we're sure it's Crohn's, according to the lab reports. C'mon in and we'll set you up for immunomodulation. (Not in so many words- they wanted a skin patch test and chest films.) I said NO THANKS, and looked up "crohn's cure" on Google. I wanted to see what the whack-o fringe had to say. Up came the SCD book by Gottschall; the local bookstore had two copies. I reserved one, bought it without reading it, and was on the diet by that evening. That was 19 December. I haven't looked back since.

I stopped taking my meds in early January (ASA and Entocort). The bleeding stopped in mid-February. Most of my weight (lost at 1 pound/week) came back by April. I've had bleeding since, but each event could be tracked back directly to dietary items I consumed: the first time, a small amount of chocolate, with peanut butter loaf. I have discontinued peanuts, and haven't touched chocolate since. The second time: cherries, which have a rind like apples, which contain pectin- verbooten as pectin is a polysaccharide. The third was when I experimented with VSL#3, a probiotic supplement. NEVER AGAIN. The bleeding lasted a week. HORRIBLE stuff for me.

I am back up to normal weight. My stomach pains are gone. Bowel movements are once every other day, Bristol #3 or #4. My blood values are normalizing without taking iron supplements. I do take vitamin D, magnesium malate, and acidophilus (and it is tough to find acidophilus without bifidus, lemme tell you).

Someone mentioned sourdough: I have experimented with sourdough, and have always used spelt flour. I have stomach pains (I believe it's an ASCA thing, not a Crohn's thing), but no D. I do not consume it in large quantities. I'd love to chat with anyone who has experimented with the SCD and sourdough; there was a good paper on the subject out of Austria not even a year ago.

Someone else asked about weight gain: I put weight back on by making huge vats of my own SCD-safe yogurt, using full-fat organic milk + Fage as the starter culture. I also consumed lots of baked chicken thighs, with skin, roasted over vegetables. Eat the (peeled) veggies, which in turn absorb the drippings for additional flavor and calories. Help yourself to honey on everything you want to sweeten. Eat richly: if you cannot consume carbs, you must get your calories elsewhere: fat and protein are your guides.

The diet does not work for everyone, but I wonder about those that do not have success- whether it is an intrinsic factor in their disease path (there may be several "flavors" of Crohn's), or if it is the inability to adhere to such a strict diet.
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