Doctors supporting SCD

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Asadmom
Posts: 14
Joined: Mon Jan 31, 2022 1:06 am

Doctors supporting SCD

Hi there, my 12-yr-old son was diagnosed with Crohn's 6 months ago. Our lives have been completely turned upside down and I am barely hanging on mentally and physically.\n\nHe is on Humira and I can't see myself jabbing him anymore. He is mentally scarred from the whole experience and I can't see him going thru another shot, by me.\n\nI have been reading about SCD. What is the success story or miracle out there? I found 3 GI doctors so far from name brand hospitaldls who all said diet will not keep Crohn's under control. Humira or Remicade for life is the answer. Is there a doc in California who can take us on using the diet treatment? How strict do we need to be? SCD or mSCD?\n\nThank you for listening to my sadness. :(
AvivaY
Posts: 75
Joined: Fri Feb 05, 2021 8:55 am

Doctors supporting SCD

Hi, Asadmom! My daughter was diagnosed with severe Crohn's at age 11 and we've gone through a lot the last 6 years. It's so hard when they're young. A few thoughts - your son has to be totally on board if he's going to go on the SCD diet. At age 12, that's somewhat unusual unless he's very mature and motivated. You can work hard providing him the right foods but if he doesn't stick to the diet in school or out of the house, the diet can't work. He has to be ready to do this, and do it right.\n\nI'm no expert on the diet, but I believe it works for some and not others, or not as well as they had hoped. This is not something to try for just short-term, as it can take some people a long time to see any results. You can't expect miracles. If your son is ready to do the diet, I think you should go for it.\n\nIn terms of doctors, I'm not in California so I can't help with recommendations, but if you can't find one who advocates the diet, just do it yourself without the doctor. Right now you have to get your son's Crohn's under control so he's going to have to stay on his meds but there's no reason why you can't start the diet at the same time. Why do you have to even tell your doctor? Don't let your doctor get you down about your son eating properly.\n\nParenthetically, Humira and Remicade can't be for life since they stop working for everyone eventually.\n\nIf you read up on the SCD diet, you'll learn that if you want to see results you'll have to do it strictly and completely. But if your son isn't ready for that - and I'd be extremely impressed if he's ready to do the complete diet - maybe you can have him refrain from certain foods and that'll be better than being on a standard Western diet, e.g. no sugar.\n\nIt was very hard for my daughter to go on the diet. She started a year ago, at age 16, and at the beginning it was hard not to be able to eat any of the food her school gave out or served, and not to be able to eat like her friends or the rest of my family. My friend's daughter refused to do the SCD diet until she was in her early twenties and felt ready to keep it. So if your son isn't ready to do it, don't feel down.\n\nGood luck with everything! Right now is the hardest time, soon after diagnosis, but things will improve and stabilize, G-d willing.
AbeE
Posts: 138
Joined: Mon Sep 07, 2020 7:57 pm

Doctors supporting SCD

I'm a patient of Dr George.\nHe first discouraged me from the SCD diet claiming that for my satiation its not worth trying. Even though on his desk on his bookshelf is sitting the WellBee's 'A Taste of Wellness' cookbook with his forward. He didn't even let me mention this word in his office.\nAfter getting Entyvio for 1 year that it was working for me, it started making problems, for 1 more year I tried to go down from white flour to spelt and reduced the sugars. I also tried to avoid processed foods, but after 1 year I had a bad flare (Following Pesach), so I tried Gluten Free witch include oat Challah and rice-cake for 1-2 months with no success, so we finally decided to start SCD. We contacted Avi Cohen from Israel (May 2021), and he gave us guidance what to eat on the diet to stay healthy and gain weight. In the last few months I can say I feel very good B"H, NEVER EVER cheated on illegals (1st night Sukkos I had a כזית Spelt Challah), and gained more than 13 lb.\nI had a visit last month with Dr. George, I told him what we are doing he was very happy with the results, **but was still not willing to reduce dosage** yet.\nLast week, I received an announcement form the NYGA team he's associated with, witch really shocked me I'm still not sure what happened that they sent it.\nI quote;\n"To Our Valued Patients,\n\nResearch has recently validated something that we at NYGA have known all along: people with digestive conditions who have access to multidisciplinary care from providers such as dietitians typically have their symptoms improve more -- and improve faster -- than those who have access to only their gastroenterologist. This is one of the many reasons why we have recently expanded our team of expertly-trained, GI-specialized registered dietitians to meet the heavy demand for their services. In fact, we now have the largest nutrition team of any independent gastroenterology group in New York City, because we recognize the central role of nutrition in digestive and metabolic health.\n\nOur credentialed dietitians collaborate closely with your physician to develop "whole patient" treatment plans that consider the role of diet in addition to (or sometimes instead of!) medications to address your digestive health and wellbeing. They offer individualized nutrition recommendations that can help meet your health and quality of life goals, from getting your GI symptoms under better control and reducing dependence on medications to feeling your best to manage or reducing your risk of various digestive or metabolic diseases."
Asadmom
Posts: 14
Joined: Mon Jan 31, 2022 1:06 am

Doctors supporting SCD

Thank you for your posts!\n\nHe is terrified of Humira and he is continuing to lose weight (he's had 9 shots so far so that's about 4.5 months). According to his doctor, you would see a night and day difference in him in terms of weight and energy. So unfortunately his weight is not going in the right direction and he is very tired all the time. There might be other side effects... and I don't even want to think about them.\n\nThe reason I asked for docs supporting IBD management via diet is because none of our 3 doctors believes in it therefore I won't be able to get a routine blood check to ensure the diet or lifestyle changes can help or need tweaks unless he is on Humira or Remicade. I "assume" if a GI doctor supports diet therapy then we can go off of Humira and go on some type of healthy diet and get blood work like every other week or month to make sure his inflammation does not come back. Or else we know medication is the only way out. \n\nI can't follow SCD closely right now because there are so many rules so the first few things I am tackling is to get rid of 1) gluten, 2) dairy (aged cheese one a week) and 3) refined sugar. I know this is far from perfect but I am also considering his mental health as I am making these huge changes and I am really praying for some help or some guidance so he can thrive and gain weight. Yes, @AvivaY, G-d willing and I pray. \n\n@AbeE Could you please share your food journey? Did you go thru the SCD phases (I see nimbal website not mentioning about phases.. just a long list of allowable and disallowable foods)? Who is Avi Cohen from Israel? I would love for my son to gain weight (or not lose weight at least). Please share your experience. I wonder if we can see someone from NYGA to manage our son's Crohn's tho we don't live in New York.
AbeE
Posts: 138
Joined: Mon Sep 07, 2020 7:57 pm

Doctors supporting SCD

I started the diet at phase 2 or 3. not sure.\nI started by eating as follows\n**9:00 Breakfast** - Soup, 1 Protein (2 eggs or Fish), Cooked/Grilled Vegs, Compote\n**12:00 Fruit** - Cooked or baked\n**2:00 Lunch** - Soup, 1 Protein (Meat or Fish), Cooked/Grilled Vegs, Compote\n**4:00 Fruit** - Cooked or baked\n**6:30 Supper** - Soup, 1 Protein (Meat or Fish), Cooked/Grilled Vegs, Compote\n\nThen I added more foods every 1-2 weeks, but **still on the same schedule until today.**\nAfter 3 Months I started using almond flour for snacks and since then I gained weight\n\nYou can contact me more more [email protected]\n\nAvi Cohen's Email, [email protected] (speaks Hebrew and some Yiddish, his wife could help with some English)
AvivaY
Posts: 75
Joined: Fri Feb 05, 2021 8:55 am

Doctors supporting SCD

Asadmom, I don't know about other GIs who support SCD, but I'll tell you about my experience. My daughter had a surgery that put her into remission, and her GI told her to go on the SCD diet soon afterwards, with the idea being that the diet would help her stay in remission. He did not take her off her Stelara, though, and she's still on it while doing the diet. I wonder if any doctors would do regular bloodwork to check status of the diet. I also wonder if there are any doctors who take their patients off their meds because they're on the SCD diet; my impression is that the ones who support it still keep the meds going at the same time, especially for pediatrics. The challenging thing for my daughter is that we have no way to see results from this diet since she was healthy when starting it. \n\nI think that you're doing the right thing by cutting out gluten, dairy, and sugar. That's probably hard enough for your son. Your doctor isn't going to take him off biologics anytime soon, but you can do your part by working on foods that can affect the gut. I would be very surprised if any doctor treating your son would take him off biologics at this point, even if they support diet therapy. Maybe for adults, but not for very sick children.\n\nI hope your son starts gaining weight and feeling better soon!
ridevvi
Posts: 106
Joined: Tue Aug 24, 2021 11:34 am

Doctors supporting SCD

Hi @Asadmom! I know how absolutely heartbreaking it is to watch your child suffer. Keep fighting, better days are ahead! \n\nWe are not in your area, so I'm not sure it's helpful but I would recommend Dr. Hupertz (Cleveland clinic). She's open to SCD and has patients that she treats with the diet. Her team also has an SCD nutritionist.\n\nMy 10yo son has been on SCD since Aug. He was such a picky eater prior to the diet that I was scared to even try it. It hasn't been easy, but I've learned a lot along the way and I noticed that his tastes have changed a lot and he's not more open to eating different foods. Whenever he's down about the diet, I ask him what he misses and I try to find a legal replacement for it. I found taco shells, chips/crackers and donuts at Liberated Speciality Foods. Ketchup, lentil pasta, cookies, BBQ sauce, burger buns and more at Wellbees. ScD Bakery has amazing treats that I can't even believe are legal.\n\nWe also have a a hard time gaining weight, so i've learned to pack in as much calories as I can into each meal/snack. For instance, I add extra butter to scrambled eggs, I put peanut butter into almond bread, I make yogurt out of half and half, I sneak avocado and squash into his burger patties 😆😆 I've asked his school to allow him to eat a morning and afternoon snack so he doesn't go too long between meals. I've also realized that I need to be mindful of his calorie intake because when I'm not delibrate about it, he doesn't end up getting enough calories to maintain his weight, let alone gain it. \n\nThe journey back to health is not easy. Many times it's 2 steps forward, one step back. Keep at it!!
Lea
Posts: 34
Joined: Sat May 07, 2022 9:27 pm

Doctors supporting SCD

Hi,\nI'm looking into changing doctors to a friendly SCD doctor.(preferably a pediatric) I live in New York. \nI would also like more info on dr. George from mount Sinai. because someone said he is SCD friendly and then the next person said he is not. so if someone can help me with a SCD doctor I would really appreciate it!
AvivaY
Posts: 75
Joined: Fri Feb 05, 2021 8:55 am

Doctors supporting SCD

I highly recommend our GI: pediatric, in NY, specializes in IBD, and he was the one who put my daughter on SCD. He's not an expert in the specifics of the diet, so he wouldn't be directing you, but he would support you. Would you be combining medicine with the diet? He's not a big SCD doctor and I don't know how often he recommends the diet to his patients, but he did here after my daughter saw him for 5 years and he exhausted all other means of treating her. You can PM me for his info. \n\nIs Dr. George pediatric? How old is the patient?
Lea
Posts: 34
Joined: Sat May 07, 2022 9:27 pm

Doctors supporting SCD

Hi, yes I would like the doctors info. I would like to go off medicine will doing the diet for a few months already.(if that's possible)\nDr. George is not a pediatric but the patient is 17 so either or is okay.
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