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Crohn's Disease Forum » Your Story » Success on Specific Carbohydrate Diet but....


11-18-2015, 10:25 PM   #1
wamom
 
Join Date: Nov 2015
Success on Specific Carbohydrate Diet but....

Hi, I'm new. My daughter (14) was diagnosed w/Crohn's in May of this year. She is unusual in that her only symptom was lack of growth/malabsorbtion...really no GI complaints but testing showed high inflammation and colonoscopy confirmed ulcers in small and large intestine. We opted to start the Specific Carbohydrate diet instead of medication. Six months later, her blood work is completely normal and she has grown a little and gained some weight. Drs. are happy. Problem is that she has grown SO sick of the food and we worry she's not eating enough. Dr. thinks she should add carbs but not terribly concerned at this point.

I have researched other diets, such as Maker's Diet, and am wondering about adding carbs such as sprouted grains or quinoa. Has anyone had any experience with deviating from the SCD? The problem is that since she didn't have obvious symptoms before, we probably wouldn't know if she had a bad reaction until way down the road. Appreciate any thoughts!
11-18-2015, 11:36 PM   #2
ronroush7
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Welcome to the forum. I wish your daughter the best . There is another section in here called my story. You might consider putting your daughter's story there
11-19-2015, 08:12 AM   #3
Lady Organic
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I am so glad for your daughter's experience being under control with diet! You may want to take a look at IBD-AID diet which is in my signature. This diet is a variant of SCD, but a bit less strict. It allows lentils for instance.
if you decide to introduce carbs, I would suggest to avoid gluten. Quinoa could indeed be an option since its gluten free.

I would suggest to have close monitoring as much as possible if changing anything: blood works and Fecal calprotectine. has she done the FC? this test is said to be pretty sensitive. ask GI if closer monitoring could be a possibility during a food transition trial. At any early signs of elevated markers, you could return to previous diet.

I eat a lot of almond butter. Its very good heavily spread on a banana. I eat that every morning. I can put blueberries or strawberries on top. This allowed me to gain a few pounds in the last year. Look on the internet for raw vegan recipes, this may open horizons in terms of fun and cool recipes, which are often SCD legal.
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
11-19-2015, 07:13 PM   #4
Robrich
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Instead of carbs she should indulge more in the heavy good fat foods.
Butter, cheese,organic meats, eggs, avocados, almond butter nuts etc.
They can be very satisfying.
Lobster with drawn butter anyone?
Steak and eggs? Cheese omelet! A satisfying breakfast helps hold back the cravings for much of the day.
Bottom line is if it is working do not change a thing!!
Really truly I can tell you that from experience.
Once you deviate from a diet that works don't feel secure you can always go back.
That failed me twice. And the disease comes back stronger.
check out the SCD support thread and maybe share food and recipe ideas.
Stick with it and good luck!
__________________
DX. Crohns 50 yrs. with fistulas for 20 years until remicade
Meds: MTX,ENTYVIO 9/14' augmentin,
pred. 10mg.
probiotics
d3, calcium, k2' magnesium, resveratrol,
Turmeric,paleo, bone broths
Past: humira no response after 6 mos., remicade amazing for 10 years then stopped working.
Entocort
6mp, Imuran never helped nasty side effects liver problems, caught pneumonia
Asacol, rowasa no response
Flagyl worked well but got PN cipro same.

Last edited by Robrich; 11-19-2015 at 08:28 PM.
11-19-2015, 08:08 PM   #5
my little penguin
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DS is on the partial enteral nutrition with crohns exclusive diet
Another variation of scd
Permits rice and 200 g of whole wheat

http://www.crohnsforum.com/showthread.php?t=71686

We also have a parents forum
A good group there if you want to join in
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DS - -Crohn's -Stelara -mtx-IVIG
11-20-2015, 12:28 PM   #6
Echodog
 
Join Date: Jun 2013
Are you consulting w a nutritionist? There are lots of them that know about Crohns and what we need. If you are seeing results in the SCD , it's worth being followed by someone since symptoms are so mild. There may come a time when things do get worse and the SCD doesn't work as well. At that point its important to have all the knowledge you can garner. (Ignore Makers diet- it and the author have been debunked)


12-03-2015, 03:44 PM   #7
wamom
 
Join Date: Nov 2015
Sorry for the delay in getting back on here. Lady Organic, thank you SO much for mentioning the IBD-AID diet. In all my research I had never heard of it, and am very excited that there is new research based on SCD! There does not seem to be much info available, however, and I have so many questions. To start: Is there a comprehensive list of "legal/illegal" foods anywhere? Also I am curious if you have to be as 100% careful as SCD (i.e. avoiding juices or canned foods because they MIGHT include illegal ingredients that are not on the label. Since the SCD is so old I wonder how much food processing has changed. And it sounds like you can eat commercial yogurt? We've been making the SCD yogurt - yummy but time consuming.

As for testing, last FCP was this summer (after two months on SCD). It was much improved. Blood work last month showed no inflammation so Dr. was satisfied for now.

Anyway, if you have any more info to share on IBD-AID I would be very appreciative! It would be a huge relief if she could add quinoa, oats and other "new" foods.
12-03-2015, 07:08 PM   #8
Lady Organic
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you can find more info on IBD-AID on this website from U of Mass:
http://www.umassmed.edu/nutrition/ibd/ibd-aid/
I am hoping they are coming with fallow up on this research soon.

also in the original article, look for table 2, all foods allowed are clearly indicated : http://www.nutritionj.com/content/13/1/5

I am an advocate at fallowing a diet without cheating. This is my opinion. I therefore do not eat any processed or canned juice/foods. i would continue with the home made yogurt. Commercial yogurts are pasteurized and stay long time on shelves, so not much must be alive in there, and not to mention the possible illegal ingredients in them. I just dont trust commercial foods anymore.
12-03-2015, 08:27 PM   #9
wamom
 
Join Date: Nov 2015
Oh thanks....found the food table. Very interesting. As for "cheating" I'm just curious if the IBD-AID diet specifies that you have to be as careful about all ingredients as the SCD. For example, light mayonnaise is allowed, but all light mayonnaise contains SCD-illegal ingredients. And almond milk and soy milk are allowed, but it doesn't specify that they have to be home-made. All store-bought milk alternatives have illegal gums, etc. Hmmm. I guess we'll have to hope for more info to be published!
12-03-2015, 09:37 PM   #10
Lady Organic
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yeah I know what you mean. IBD-AID is less strict than SCD but is SCD inspired. The emphasis on prebiotics (specific fibers) in conjunction with probiotics is more of an IBD-AID thing though I believe. This addition would be a great protector of the colon and health. I really apply this principle in my daily foods and eat lots of it. (inuline chicoree root, onions, bananas, asparagus, etc). along with raw fermented veggies. I make my own saurkrates now.

I think IBD-AID is a good compromise especially for beginners with diets. It seems to be efficient for a good proportion of IBD patient according to the article. And this GI nutrition lab seems to be in operation since a few years now. It would close if the findings were not interesting IMO. maybe some patients need diets which are more strict (SCD). I personally think I belong to this group. But I am not sure yet. I am still exploring diets and the future will tell me.
12-05-2015, 04:44 PM   #11
Crohns08
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Breakingtheviciouscycle.com is the comprehensive companion site to the SCD and by the founder. If you google scd recipes and blogs there is SO much out there. If the diet is working do not stray!!! If anything maybe let her indulge in some of the desserts you can make or some of the breads you can bake.
12-05-2015, 06:54 PM   #12
Echodog
 
Join Date: Jun 2013
I think a question that is worth asking is "what does success mean?" I tried a very similar diet at one point. My fistula didn't go away, my iron levels didn't go up and I was still running to the bathroom constantly. Worse , I lost weight because it was so difficult to stay on the diet when I'm not home which was frequently.
What has helped me is after speaking g to a nutritionist, I know what foods and meals are beneficial. I have kept a food journal so that I have a good idea of what foods mess me up.
I'm wondering whether the SCD has a tendency to keep people from getting sick or when you are in the middle of a Crohns attack does it help make the symptoms go away?


12-05-2015, 07:05 PM   #13
ronroush7
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I have never tried the diet myself but hopefully someone can help you.

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