Crohn's Disease Forum » Parents of Kids with IBD » Study:Lack of Mucosal Healing from Modified Specific Carbohydrate Diet in Pediatric Patients with Crohn's Disease


08-22-2017, 01:53 PM   #1
Maya142
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Study:Lack of Mucosal Healing from Modified Specific Carbohydrate Diet in Pediatric Patients with Crohn's Disease

A good reminder to monitor carefully!

Lack of Mucosal Healing from Modified Specific Carbohydrate Diet in Pediatric Patients with Crohn's Disease

Wahbeh GT1, Ward BT2, Lee DY3, Giefer MJ4, Suskind DL5.
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Abstract
Exclusive enteral nutrition is effective in pediatric Crohn's disease but challenging as maintenance therapy. There is interest in food-based therapies such as the specific carbohydrate diet (SCD) but paucity of data on efficacy and effect on mucosal healing; an evolving target of IBD therapy. We conducted a retrospective review of the mucosal healing effect of the SCD in pediatric CD. The endoscopic findings for children <18 with Crohn's disease treated exclusively with the SCD or modified SCD (mSCD; SCD + addition of "illegal foods") were reviewed before and after the diet. Ileocolonoscopic exams were scored according to the Simple Endoscopic Exam for Crohn's disease (SES-CD) and findings on upper endoscopy were described. Seven subjects were identified, all on mSCD. The average age at starting the SCD was 11 +/- 3.4 years and median duration of SCD/mSCD therapy was 26 months. All subjects reported no active symptoms prior to repeat endoscopic evaluation on mSCD, the majority had consistently normal CRP, albumin and hematocrit assessments, and mildly elevated fecal calprotectin (FCP >50 mcg/g, median 201, range 65-312) at any point within 3 months before the repeat endoscopy. One patient showed complete ileocolonic healing but persistent UGI tract ulceration. Complete macroscopic mucosal healing of both the ileocolon and UGI tract was not seen in any patient
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
08-22-2017, 01:54 PM   #2
Maya142
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Another study:

J Pediatr Gastroenterol Nutr. 2017 Apr 27. doi: 10.1097/MPG.0000000000001613. [Epub ahead of print]
Nutritional Adequacy of the Specific Carbohydrate Diet in Pediatric Inflammatory Bowel Disease

Braly K1, Williamson N, Shaffer ML, Lee D, Wahbeh G, Klein J, Giefer M, Suskind DL.
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Abstract
INTRODUCTION:
The Specific Carbohydrate Diet (SCD) is an exclusion diet used as a therapy in inflammatory bowel disease (IBD). The aim of this study was to evaluate the nutritional adequacy of the SCD.
METHODS:
Prospective dietary data over 12 weeks were analyzed for pediatric patients on the SCD. Intake of 20 key nutrients was compared to Dietary Recommended Intake (DRI) levels and nutrient intake data from similarly aged children from The National Health and Nutrition Examination Survey (NHANES) National Youth Fitness Survey (NNYFS) in 2012.
RESULTS:
9 patients enrolled, with 8 patients completing the study. 6/8 individuals completing the study had gained weight, 1 individual had weight loss, and 1 had no change in weight. Energy intake was significantly greater than 100% of the Recommended Daily Allowance (RDA)/Adequate Intake (AI) for 64% of daily intakes completed for this study. The majority of participants' daily intakes met or exceeded the RDA for vitamins B2, B3, B5, B6, B7, B12, C, A, and E. One hundred percent of participants' intakes were below the RDA for vitamin D. Seventy-five percent of daily intakes were less than the RDA for calcium. The upper limit was met or exceeded for magnesium in 42% of daily intakes. Average Vitamin A intake was significantly greater than the upper limit (p = 0.01).

DISCUSSION:
Nutrient intake of pediatric IBD patients on the SCD was adequate when compared to a healthy peer reference population, but adequacy was variable when compared to the DRIs. Close monitoring with a multi-disciplinary team for patients using the SCD as an alternative or adjunct therapy is recommend to ensure positive outcomes for overall patient health.
08-22-2017, 02:14 PM   #3
Guerrero
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Members of the SCD sect may argue they should have exclude also this or that food or buy that book on some marketing website ;p
08-22-2017, 02:44 PM   #4
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Did these studies just come out? I would like to read them in entirety. Do you have a handy link?
I don't think SCD adherents are unreasonable. Seeing as information is coming out of Suskind/Seattle childrens where most of the major mainstream support for the diet originated.
We did the diet strictly for 6 months and recently have been trying to add brown rice, cocoa powder, and sweet potato. Would hate to sabotage progress! It is really hard to monitor with asymptomatic kids....
08-22-2017, 02:52 PM   #5
Maya142
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This was certainly not meant to incite any sort of argument.

We have one or two kids on here who are doing great on the SCD (Optimistic's son comes to mind) - I just saw these studies and figured this is good info for any parent to have.

Pilgrim, let me see if I can get the whole study for you. The abstract is from PubMed.
08-22-2017, 02:53 PM   #6
Maya142
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This is the link: https://insights.ovid.com/crossref?a...00000000-97173

I can't access the whole study though.
08-22-2017, 03:30 PM   #7
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Thanks for the link Maya142. H is doing very well with the diet but also on meds.
08-22-2017, 03:41 PM   #8
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So glad to hear that!!

If my daughter was open to doing a diet (I think SCD would be too hard, IBD-AID might be easier), I would certainly push it. In fact, I have pushed it! In addition to meds.

But she is a stubborn young adult and is completely uninterested at this point. Perhaps when she is older...
08-22-2017, 09:13 PM   #9
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Yes! I felt lucky to push my will on such a young kid! She has beem very good about the sacrifices. I can't imagine a young adult volunteering for a strict diet. She will find the info if she wants it someday.
08-22-2017, 09:16 PM   #10
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Yes, I think once she is older and out of college, she may be interested. Our children's hospital is doing a LOT of studies on diet and IBD (but of course, by the time they have results she will have switched to adult care!). Usually some part EN and some part diet.
08-22-2017, 09:25 PM   #11
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The first study makes me wonder. If we get another high calprotectin in Nov. At our next visit, I think it's time to ask for an MRE to see where the healing is at. Labs otherwise are super, but they are for kids in the study too.
As for the nutritional study, I think they(IBD kids in general) are all vitamin D deficient . I don't get the calcium thing. I thought steroids were the calcium eaters, and wouldn't have thought to associate it with SCD.
H is vitamin D deficient, has been since she was diagnosed. She also has a very stubborn zinc deficiency, which started many months before SCD and unfortunately the diet has not helped it.
08-22-2017, 09:33 PM   #12
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Well, at an IBD conference at our hospital, the doctor speaking said they don't recommend the SCD for kids because it's so restrictive. They find that it's hard for kids to be compliant, they lose weight and they become deficient in nutrients.

Now we've never done the SCD so I can't say how hard it is or isn't. But perhaps if you have a very picky kiddo who will only eat certain things, and you further restrict his diet, then they end up with nutritional deficiencies?

That is just an uneducated guess.

I would agree that if your kiddo has another high FC, then it's time to do testing - probably scopes and an MRE. I would think they'd want to switch from Humira to something else if Humira + MTX + SCD aren't working for her.

Unfortunately, early onset IBD can be really tough to treat .
08-22-2017, 09:34 PM   #13
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Wanted to add - when my daughter is on formula (supplemental EN - in addition to regular food), her vit. D is thoroughly normal.
08-22-2017, 09:53 PM   #14
my little penguin
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Ds takes vitamin D as a supplement and formula as well
His bloodwork has been well the normal range with those two things
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08-22-2017, 10:18 PM   #15
Pilgrim
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We are pretty far north (Canada) and maybe that is why vit D deficiency is treated as commonplace by her GI. We do supplement but for her she has had a deficiency before any treatment, during EEN, and now with SCD. So, just observing that for her the vitamin deficiencies are both before and during SCD. It's not helping, but not hurting as far as I can see.
I agree with you that it is difficult to put on the pounds with SCD. When we add formula it is no problem, but when we rely on diet alone she is stalled. If I ate all the full fat yogurt, and nuts, and baking, I would definitely gain weight but she doesn't.
Bloodwork charts all improving over the last year(aside from the 2 vitamin deficiencies ) Calprotectin decreasing, but still high at last check. Energy is good. But it's still not remission.
08-22-2017, 10:23 PM   #16
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I would guess that nutritional deficiencies could also be from active disease, especially if she has small bowel disease. If she's never been in remission, that would explain why she has had nutrition issues all along.

When she did EEN, did you use Ensure/Boost or a more broken down formula? I wonder if she is just not absorbing because of inflammation - in that case, a semi-elemental formula like Peptamen Jr would help.
08-22-2017, 10:30 PM   #17
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We always used a polymeric formula (Ensure/Boost) because she was willing to drink it.
If she is still stalled with her weight gain, next visit we will have to look at our options. I will mention a more broken down formula if they don't.
Thanks for the suggestion!
08-22-2017, 10:36 PM   #18
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Our GI prefers to use semi-elemental for kids with Crohn's - we were given Peptamen Jr and Pediasure Peptide as choices. They do taste worse than Boost/Ensure - there is no getting around that.

But some kids are able to get used to the taste. My daughter got to the point where she could deal with the taste, and was used to it, but couldn't drink enough and eat enough to even maintain her weight.

It's definitely worth a try, especially if she hasn't gained weight or grown recently.

I don't know what the options are in Canada - I would assume pretty similar. I'll tag Tesscorm - her son was given an elemental formula but it was through a tube, if I'm remembering correctly.

Another possibility - my daughter needed a LOT of calories to gain weight - about 500 more than her nutritionist initially calculated. IBD kids sometimes just need more.
08-23-2017, 06:15 AM   #19
my little penguin
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We were told the same
Prior to Crohns dx the GI was"ok" with kids boost etc...
After Crohns dx -GI stated only semi elemental or elemental formula
Ds was started on peptamen jr and has been switched over the years to elemental
He currently drinks neocate jr orally about 50% of his calories.

This pulled him up from the bottom of the growth /weight chart years ago
And keeps him well above average now
08-23-2017, 10:16 AM   #20
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When S was diagnosed at Sick Kids in Toronto, they gave us an elemental formula (Tolerex). As I knew nothing about crohns/treatments, I didn't question anything they said but it was clear that their treatment preference was EEN using that formula using an NG tube with daily insertion/removal. No one mentioned anything about semi-elemental and the option to drink the formula. So, we just did what we were told.

Steroids were vaguely mentioned as an alternative. In hindsight, I can see they had a clear preference for EEN and even how it was administered. But, as I said, because I didn't know anywhere enough to question anything, I'm not sure if their preferences were based on studies, past successes, simplicity (ie no arguing/pressures with kids to drink 'enough'), etc.

After the exclusive period, they gave us a 'reinto' diet but, beyond that, told us S could eat whatever and as much as he wanted (excluding nuts, seeds, popcorn). And he was to continue with half the formula dose.

So, until S moved from the ped to adult hospital (~1.5 years), his only treatment was supplemental EN. EEN took him into remission (labs all good, etc.), PEN kept him in 'clinical' remission (no symptoms but MREs continued to show some inflammation).

Upon transfer, adult GI added remicade and, as he wasn't at all convinced the PEN was helping, S cut it out (other than agreeing to drinking a couple of Boost shakes per day).

Pilgrim, in our case, my insurance did not cover the cost of the formula (not sure about equipment??) but the hospital arranged for CCAC to cover the cost of the formula and equipment. I know CCAC has had significant cuts, so I'm not sure what their policy is now but it might be worth looking into (however, there needed to be a prescription from GI for the formula).

Pilgrim, a bit off topic, but I did want to pass some into on to you... I thought of you at S's last follow-up because I saw a notice at his current GI (at Mt. Sinai) indicating that they have a system in place to treat IBD patients in northern Ontario. I believe ongoing care/follow ups are done thru skype (or similar). I don't know how you manage her care now (maybe it is already being done this way??) nor do I know if Mt. Sinai takes on ped patients (as they work so closely with Sick Kids) but wanted to pass along the info to you.
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Tess, mom to S
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
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