PRAISE REPORT – Katie’s Great Test Results!!!

Thank you, Mom Jody, for sharing your daughter’s SCD story! It is always an encouragement to other moms to see what this diet is capable of doing in our children’s lives! I am so excited to hear how great she is doing! Please keep us updated!!! And keep up the awesome work, Jody!!!

Mom Jody wrote:

I just wanted to update you on Katie’s SCD journey, with outstanding test results. I’m hoping that this bit of information will provide evidence of this diet’s efficacy as well as great encouragement for those of you just starting this difficult, tiresome journey. Many of you are probably wondering if all of this work in the kitchen, time researching and reading labels and sweat and tears is worth it. Well I’m here to tell you, “YES! It most definitely is worth every second of it!” Katie’s Calprotectin test results came back today, and they are reason to celebrate: <15.6! We are getting labs done tomorrow to check her SED/CRP, levels, etc. I can only imagine that they are also within a normal range too. *(note: Katie's CRP levels have always been within the normal range)

Here is just a snapshot of our journey with Crohn's Disease:

-On Nov. 21, 2012, our 9 year old daughter, Katie, was diagnosed with Crohn's. (mild/moderate) By Dec. 1, she was put on Prednisone, followed by 6MP (all of which we were against, but were given no other options for treatment.) SED rate continued to bounce between 39 (@diagnosis) to 19, 16, 18, 36 (July 2013).

– August 2013, we took her off of 6 MP and followed a holistic approach, seeing a Naturopath beginning in March 2013.

-Sept. 2012 -flare (rectal fissures, much pain, a very small amount of blood and some diarrhea) SED 19, so GI doc said we didn't have to do a Calprotectin (which we had never done in the past)

-Oct. 2013 (motherly instinct), although she seemed out of the flare – I thought maybe we should do a Calprotectin test for a baseline…486, with 168 being the high end of normal. (GI doc said 2 months, retest labs and Calprotectin)

-Dec. 2013 – SED 36 and Calprotectin 1208! Now I panic. Obviously, holistic isn't cutting it along. Naturopath sends us to Integrative Doctor in St. Louis (Dr. Yu).

-Jan. 2014 – Dr. Yu treats Katie for parasites (Over the past month of so, Katie seems to be getting thinner, a bit pale, fatigued, etc.)

-Mar. 2014 – Dr. Yu treats Katie for bacterial/yeast overgrowth and gives herbal parasite supplements…we start dabbling in the SCD diet based on Katie's IGg allergy test results done at Dr. Yu's.

-Full swing on the SCD Diet (Thank you, Paige, for encouraging me 🙂

After being on the SCD just 1 month, SED rate came back at a 15! The best it had ever been, even on 6MP! We chose to wait and continue the diet for a few more months before redoing the Calprotectin. We knew Katie was feeling better…between Dec. and April she had gained 10 pounds, more energy, made it through the whole soccer season with barely any complaints, had better coloring and the sparkle was back in her eyes again.

This is the first Spring/Summer, Katie has not needed environmental allergy medicine. She used to be on 2 Zyrtec/day, 2 r/x eyedrops/day and Nasonex 2x/day for as long as I can remember. I used to have to carry an ice pack and wet washcloth in my purse to put on her eyes because they itched so badly….not this summer! She was also retested for an anaphalactic peanut allergy and her number was down to 1.72… she last tested at a 7.75! This diet and holistic approach to Crohn's yields amazing results!

August 2014…Calprotectin: less than 15.6. Thank you God! We see the GI doc next week, so I'm interested in hearing his reaction to her test results. He told us from the "get-go" that diet had absolutely nothing to do with Crohn's Disease or intestinal healing. But we know it has everything to do with remission and healing and maybe even curing!

Don't give up! You can do this…we do this because we love our babies, and we don't want to see them suffer any longer. No one said it was going to be easy, but it is going to be worth it!

Feedback Wanted From New Mom Deirdre – Including Missing School

Mom Deirdre has been following the blog for a while, but hasn’t jumped into the diet yet. Her daughter was diagnosed with UC in August 2013. Her UC is isolated to her distal colon. Deirdre says the doctor prescribed nightly “Rowasa” enemas. Unfortunately her daughter became very sore and they are now having to give her a nightly suppository instead. Deirdre is reaching out for some guidance and interested to hear from you moms who have been doing the SCD diet.

Deirdre wrote:
I feel encouraged about the SCD diet but I don’t know if we have the “will” that it takes. How drastic is it? I have looked into my pantry closet & see healthy snacks (gluten & dairy free) that my daughter loves. Any advice or 1st steps to learn to “let go” of our habits would be appreciated. We feel so alone & sad right now. And also, how did/do you handle attendance in school? We have a fight on our hands right now. My daughter has missed a lot of days. Thank you so much.

I always try to help by leaving my opinions and advice at the bottom of each post. But it would be great to hear from more moms out there! I haven’t had alot of experience with missing alot of school time. And how would you answer her question, “How drastic is the SCD Diet?” I can’t wait to read your comments!

My thoughts:
First I want to say thanks Deirdre for reaching out to us. YOU ARE NOT ALONE! That is one reason I started this blog! We are only an email or phone call away! I posted on the blog recently asking where some of the moms are located. Please everyone if you haven’t commented there, go find the post and let us know. If you see someone close to your area email me and we might can get you in touch with each other. I have made some really close friends through this diet and blog.
Your first question, “How drastic is it?”, and “I don’t know if we have the ‘will’ that is takes”. The diet if very difficult at first. I will be honest. Anything new to us now a days is difficult in the beginning if you think about it. I HATE to get a new phone and have to learn how to quickly access things differently than I did before. Things have become so easy for us because everything is electronical and easy and there are drive thrus on every corner and it’s SO easy to get take out and save time and energy not cooking. And with the prices of groceries now it’s VERY easy to justify take out. I have heard that if you do something consistantly for, is it 2 weeks, you will change a habit. The SCD Diet is not easy in the beginning. But after a month or two it gets easier and easier. By 6 months it’s like part of your life and soon after that the SCD Diet seems like part of your life and it comes as natural as everyday life before you started it. I know there are some moms out there that have started the diet recently in the past month or two. Are things getting easier for you? As far as having the “will”… Through doing the blog I have met a couple of families that were not able to stick to the diet. All I can share with you to have the “will” is to tell you what helped me and what I have heard helps alot of other moms out there stick to and continue the SCD Diet for their children. When Justin was diagnosed with Crohn’s we were thankful it was not a life threatening cancer/disease that we hear so many children going through. It was something that can be controlled and you can live with it. We were thankful to be told about the diet and have something to try first before putting him on medications that would have side effects. Your “will” has to come from the love you have for your child. That’s where my “will” comes from. Justin has been struggling with cheating on the diet lately and three weeks ago I started the diet with him to try helping him not feel alone. I love my child and if there is something I can do to help him stay well and make him healthier as long as he lives with me, I will do “what I can”. And please remember it is HARD to do alone! You do need a support group or someone to talk to occassionally or every day. I wouldn’t have made it without some of the moms I talked to!

Justin had a mild case and hasn’t missed “alot” of school. I am hoping some of the other moms with leave you advice about this. When Justin did miss school I made sure to get doctors excuses in and make sure his work was caught up. But I know it’s different when lots of school time is missed. There are programs out there to help (I’ve heard of programs where teachers come to the house, or online programs).

As far as your “healthy” snacks in your pantry. Look closely at the ingredients. On this diet you are trying to stay away from the preservatives that they sneak in lots of things. You CANNOT go by what you read on the front of the boxes! You need to print out a copy of the “Legal/Illegal” list and look over it and highlight things you normally eat. Bookmark the list online on your phone and keep it handy while at the grocery store. You WILL eventually learn off the top of your head what’s legal/illegal in most basic items. I still refer to the list on my phone while at the grocery store occassionally while at the grocery store after 3 years of doing the diet.

How to get started? I would get the items needed to start making the homemade yogurt and start with that. It will make it ALOT easier to do as I mentioned already – printing off the list and highlighting and getting familiar with it AND keeping a journal. If you are used to eating healthy as you mentioned, then you might be surprised you might already eat some legal items that will help to make it seem normal. Or you might just have to make a couple of minor changes – cook with olive oil, make your breading when frying meats with almond flour/coconut flour instead. You have to make up your mind to start and just do it. Please read all of the posts here on the blog under “Getting Started”. I tried my best in the beginning when I started to write things down to help make it easier to understand and get started for others.

Please let us know what other questions you have! I hope other moms leave feedback! And good luck!!!

Moms, You Should Try It!?!

I’ve been debating whether to share this with everyone. But my thinking is if I share it with you, then it might hold me more accountable. I started the SCD Diet with my son, Justin, this past Monday. I tried it 3 years ago shortly after he started the diet. I gave up at the end of week 2 when I got the flu like symptoms from not having all the sugars and preservatives.

If you have been following this blog for a while then you have read about my 13-year-old going through a stage of cheating and wanting to eat other things not legal on the SCD Diet. If he got upset with me he would sneak a food he wasn’t supposed to have, etc. Since he has been on the diet 3 years now we have decided to let him eat freely from the diet socially, occassionally. He went on a 3 day camp with his class and ate the food there. He did use good judgement and didn’t eat ice cream or buy the candy. He did not show any signs such as pain, bleeding, etc. that he used to show after cheating on the diet during his first year or two. He went straight back on the diet when he got home. BUT please keep in mind he has been on the diet for 3 years! AND Justin did not have a severe case of Crohn’s. After he had been on the diet for one year, his pill camera showed his intestines as being healthy and that of a normal child his age with no damage. A few of you knew that Justin recently had a pill cam done for his 3 year anniversary on the SCD Diet. We still have not received those results. As soon as I get them I will share the news. We are anxious to see if the diet is doing as good for him on his insides as it appears from the outside. Justin has gained weight and if very active now!

As I was saying, I started the diet Monday. Today is day 3 for me. I’m already standing in the kitchen like I have seen Justin numerous times trying to figure out what I’m going to eat. Just being on the diet for three days is giving me a great perspective of how things are for my son and he’s been doing this for a long time! At first my excuse used to be that it was too expensive for me to go on the diet. Have you noticed how much groceries have gone up!?! It costs alot to eat period! And now I’m looking at it as if it might even save me money in the long run as much as eating out has gotten! Having been on the diet for only three days I already feel better. I know the sluggish stage is coming. I’m used to eating lots of sweets and sugar. I drank diet cokes regularly, not every day necessarily, but often enough. I’m the type mom that will do anything for my children. I will do for them before I would go to the trouble for myself. I’m trying to do this for Justin. He’s been amused that I’m eating what he’s eating and makes fun of me when everyone else in the house is eating something good that I normally would eat and can’t now, for example my husband’s homemade chocolate birthday cake. When I’m second guessing myself and asking myself “Why am I doing this?” I tell myself it’s for Justin. I think he’s at the point he needs for me to understand his frustrations and needs a partner in this.

I know a few of you moms out there, Giselle and Wendy, have been on the diet with your children. Does anyone else? If not, I think it would be good to at least try it. Even if not for very long, trying the SCD Diet personally will give you a different look at the diet I believe and might better help you relate to the trials with your child on the diet. I would love to hear your opinions and what you are doing. Wish me luck! I am going into this at least this time determined to fight through the end of “week 2”!

I did not mention that I, too, have been having some intestinal issues (I will spare you the details! Lol). I do not currently have health insurance so I have been self medicating myself for over a year. Without the medicines my symptoms come back. I stopped taking my medicines when I started the diet. I’m anxious to see what the diet does for me. I’m also overweight. So I know it definiately can’t hurt me! Wish me luck! If anything else, Justin is enjoying this!

Where Are You Located?

One of our new moms would like to find someone else in her area doing the SCD Diet. So I thought it would be a good idea for everyone to comment and tell us where you are from. You can be as specific as the city and state, or just the northern part of your state, etc.

Me:
I’m from the Atlanta, Georgia area.

New Mom Carrie Seeking Your Advice Moms!

I recently heard from a new mom to our blog seeking advice! Welcome, Carrie! As with all of us, getting starting can be confusing and intimidating. So please read Carrie’s daughter’s story and comment with your opinions. I know I would NOT be where I am today on our SCD journey without advice and support from alot of Moms out there! So let’s pass it on and let us know what you think!

Carrie wrote:
I’m a little desperate for an opinion. Our 14 year-old daughter was diagnosed with UC in November. Her doctors now feel her diagnosis is Crohn’s. They would like to change her meds and restart a course of prednisone which we are half way through. In December we discovered the SCD Diet and I ordered several books on the topic. We began the diet and although we are still learning she thinks it’s helping. For example, I recently discovered through this forum I believe that our yogurt maker is running too hot so it’s possible the yogurt we have been using was not beneficial to her all this time. Although her tests are coming back with some improvement, it seems she needs stronger medications (6mp) at this time. I wonder if hearing from so many moms you would know how many IBD kids still take medications and if this diet has been unsuccessful with some children. I have only read of the positivies of this diet but maybe it doesn’t always help? Her doctor said we can give it a month to see if she will make progress on the diet but he believes her symptoms may become worse in that time. I was so hopeful we would be able to help her and I quite honestly was heartbroken when they explained the medications she would be depending on. She dreads more prednisone. Also, I can’t help but wonder if the iron supplements worsen her symptoms. I know I cannot tolerate them so how do we know that the iron isn’t causing the problems we are trying to avoid? That said I know she needed them. I have never felt less education and more helpless. Any thoughts? I am so very grateful you are willing to listen.

My thoughts:
Carrie, thanks for coming to us for help. Please remember these are just my “opinions” from having been through the diet and talking to others. First from reading your story I want to say to use your motherly instincts. I have learned from talking to SO many moms that the doctors do not always know what’s best for our children. I say this from your comment on the iron supplements as well as the dosages and variety of medications. If you say you are wondering if this worsens her symptoms, then maybe you could research SCD foods high in iron and try those.
MOST IMPORTANTLY I would like to stress to you that “one month” is NOT going to be enough time to have your daughter on the SCD diet to see the results you are looking for! Please try the diet for at least 6 months if not more! It takes some children 4-6 weeks to go through the “dying off stage” (please search “dying off stage” on the blog and read posts). Your daughter did not get ill within one month. She’s not going to heal within one month!
From talking to other moms, I have listened to many tell me how the doctors push the medications. I have had moms tell me how they have said no to medications. I have heard there are SO many doctors out there that do not believe in the diet. You commented your daughter already feels like it is working! Yeah! Keep going! I promise it DOES get easier!!!!
I was fortunate my son’s doctor introduced the diet to us. He gave us the option of medication or trying the diet. Justin has been on the diet 3 years now and has been symptom free (after the dying off stage) and medication from as long has he hasn’t cheated! So I cannot give you personal advice on the medications. I know there are moms out there that have had to give there children medications and some are still taking medications, BUT the SCD has helped tremendously! I hope those moms will comment and share with you!
We are here to help! Do not hesitate to contact us with your questions, concerns or just to vent! We’ve all been there!

New Mom – Suzanne – WELCOME!!!

I love to hear from new moms! I welcome any new or current moms on the blog to share their stories with us and ANYTHING they would like to share here on the blog. And ask ANY questions you might have!

I had the opportunity to meet Suzanne on the phone today. She shares her daughter’s story with us below. Please comment with your advice to Suzanne! We wish you luck on your new SCD adventure!!! We are here for you!

Mom Suzanne wrote:

Hello,

My eight-year-old daughter was diagnosed with Crohn’s one week ago following an endoscopy and colonoscopy. We were expecting the diagnosis, as she had anal ulcers in addition to chronic diarrhea and weight loss, and the GI doctor told us that was a typical Crohn’s presentation. Of course we are devastated, and our daughter’s emotional health seems so fragile right now as well as her physical health.

Before the colonoscopy, I had read about the SCD diet through various websites as well as BTVC. My husband and I see the diet as a viable option for at least living with fewer drugs, though of course drug-free would be best. We started her on the diet immediately after getting the diagnosis, and today is day 7. She has already regained the weight she lost from the fast required by the colonoscopy, and from the diarrhea that followed the next day. I see this as a very good sign. Her bowel movements are still very loose but look better in color–not at all watery–and they are holding even at 2-3 a day. She has more energy and her color looks better, but she still has those anemic dark circles under the eyes. She has been taking Flagyl since the colonoscopy. My daughter has also been on Anucort-HC suppositories since the colonoscopy/endoscopy. Those, combined with Manuka Wound Honey, practically healed the anal fissures/ulcers in less than a week, though we are still using them because it is so much easier to have BMs without all that pain–and we are afraid of them coming back! Second, her hemoglobin is 10.2 and her vitamin D is 16, in case anyone has thoughts about supplements.

We met with the GI doc on Tuesday, and she recommends putting our daughter on either Pentassa or 6MP; she actually thinks 6MP is the best choice but is “willing” to start with Pentassa. The disease looks early stage and is limited to the anus/rectum and the terminal ileum. However, the biopsy results showed some granulation which the doc says means the disease is likely working at a deeper level than just the mucosal lining. She was pretty dismissive about both side effects and had never heard of the SCD diet, nor did she think diet could possibly help with the disease process. We are supposed to go back in one week and tell her which medication we want to go with. She says her plan would be to put our daughter on meds through college age, without any attempts to taper or go off them because that would invite the disease back.

We read about the Woodward family’s success with Dr. Benjamin Gold at GI Care for Kids in Atlanta, and are thrilled to find a specialist willing to use the SCD approach alone or in conjunction with drug therapies. Dr. Gold’s office has been closed yesterday and today due to the bad weather, but I will try first thing tomorrow. We are hoping to see him for a second opinion, and hope it doesn’t take two months to get an appointment.

The GI we have seen also wants us to be giving our daughter an iron supplement and all kinds of other supplements, and she was completely irritated at my concerns about the iron, which seems to go against the SCD advice. When I told her I would rather do the homemade yogurt than the probiotics with grain ingredients, she looked at me like I was crazy.

Your blog has been so encouraging! I also would be grateful for any suggestions or thoughts you could offer me while we wait for an appointment with Dr. Gold. We have two other children, close in age, and this has been the hardest thing our family has ever gone through. I know other families experiencing IBD in their kids understand!

With thanks and gratitude,

Suzanne

My thoughts:
Mom Suzanne explained to me today that it was explained to her by the doctor that her daughter was in early stages and does not have a severe case of Crohn’s. Her daughter’s doctor is recommending medication. When we were talking today I told her I strongly recommend from my experience and from learning from other moms here on the blog to try the diet first before turning to medications. I told her to be expecting and looking for her daughter to start feeling sluggish at the 2 week mark of starting the diet and for the “dying off” stage. I encouraged her to try to stick to the diet strictly at least 3 months and that it WILL get easier!!!
Suzanne is looking forward to hearing from you moms. What is your advice and experience?

The Woodward Family Journey

Everyone is welcome to share their SCD story! Thank you to the Woodward family not only for sharing their story, but also for all of their hardwork with the Woodward Crohn’s & Colitis Foundation!
***
Our family’s journey with Crohns and Colitis has been a long one. Our son Jack (10) was diagnosed with Crohns in October 2011 after years of symptom and initially thought to be Colitis in 2009.
Our daughter Kristina (12) was diagnosed with UC in February 2012. The news of having two children with IBD was devastating. I couldn’t believe Kristina had UC as her symptoms were very atypical. She only had joint pains, normal labs and ocasional belly pain. Dr had even told me “I usually don’t find anything when we scope after having normal labs” but with the family backgroung lets make sure. What made the diagnosed even harder was that my husband has Crohn’s too since 1989. I have seen his up and downs through the years. All the meds, all the surgeries, all the struggles were foreshadowing in my head. I had no idea how I was going to manage it all. I was completely overwhelmed when Dr Gold at GI care 4 kids gave me the news. I just sobbed.
It took me a week before I could even tell my daughter about the result because I couldn’t talk about it without crying. However, at the time of diagnosis, Dr Gold told me if I would consider SCD diet. We talked about it and at that moment I think I knew this was the path we would take. I felt that we had no choice and we had nothing to loose.
A few weeks later we came back, to talk about the biopsy results and treatment plan. I have had a family talked prior to the appointment with the entire family. We agree to go on the diet, including myself. We would do it all together.
It has been almost 2 years, Feb 4, 2012, since we started. Kristina is in remission and never went on medications and gained 23 lbs in the last 1 year and 11 months. Jack is also in remission although he is onPentasa. We tried to take him off and he had a major flare. Jack had gain 21 lbs after a whole year prior to the SCD diet of no weight gain and no growth.
Prior to our kids diagnosis, we had done a number of fundraising events for CCFA. Now that we have 3 with IBD we felt that we wanted to have more control were our fundraising effort would go. So in October 2012, we got non-profit status for our own Woodward Crohns and Colitis Foundation. Our goal is to fund non-pharmaseutical research. Our first goal is to help GI Care for Kids and the Children’s Healthcare of Atlanta raise the necesary funds to take the pilot research to a full clinic trial research. To date we have raised over $70k.

After covering expenses of any initiative, a 100% of the fund are been reserved for this SCD research.

It has been an challenging but rewarding journey so far for the entired family!

Gisele Woodward
Co-Founder
Woodward Crohn’s & Colitis Foundation
~ Together for a cure!
http://www.woodwardccf.org/