04-09-2019, 03:39 AM   #1
Delta_hippo
 
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Does diet really help?

Hello everyone

I've got pretty aggressive crohns, been unwell for a year now, going through different drugs without success. I'm so tired of being ill (fast weak pulse, low blood pressure, nausea, fatigue, no appetite, feeling like I'm going to collapse). I could also really do without having to phone in sick again for a good while work wise.

So my question is, have any of you had good results from any of the diets, and if so, which one? I just want to know if they're worth trying.

Thank you very much.
04-09-2019, 06:57 AM   #2
lukesjr
 
Join Date: Dec 2018
I have read so much on diet my brain hearts. I have a PhD in nuclear engineering and I feel like I have read more about crohns that I should be given a PhD in Crohns! As I am sure most people here have.

As for does diet work. I don't think you can get a definitive answer to that. I have read the evidence that suggests diet works. But there have also been people that claim diet has done nothing for them. I think supplements not diet have worked pretty well for me, I have mild crohns. I often wonder weather people truly commit to diet or supplementation to make a noticeable difference. Like people might try the SCD diet for a week and say, "it doesn't work". I think food and supplementation are not potent drugs, they will take time to work. There is some research on the SCD and lowfodmap diet as well as as bunch of research on supplementation and the effect on crohns.

I would do some reading and come up with something you can fully commit to, talk to your Dr and go fully in for months. Some people have said it took 3 months for a certain diet to help. Some people have said that it took 6 months to a year before they felt better on a certain supplement.

I think most people would agree that a SCD diet or similar really can't make things any worse, so give it a try.
04-09-2019, 07:18 AM   #3
Jo-mom
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Hello, I have read enough about different diets that my head hurts as what you can eat one diet, you can't eat on another. If I were in your shoes, my first stab would be to try the SCD diet or at least a variation of it. My son has moderate to severe crohn's and food doesn't seem to be the culprit, although he does take supplements - Curcurmin, Fish oil, probiotics, etc. I bought the book to read up on SCD diet and definitely might be worth a try. I believe there are many threads on diets on this forum that could be helpful. Good luck.
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Diagnosed at 19 with moderate to severe crohn's (July 2018) - likely had it since early teens asympomatically -

Enteropathic arthritis - diagnosed June 2018 - showed symptoms mid teens.

Entocort August 2018 to January 2018
Remicade - Sept 2018 to May 2019 -5 mg/kg every 4 weeks

May 2019 to present 10 mg/kg every 4 weeks
04-09-2019, 10:48 AM   #4
Bufford
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I've been on a diet since my diagnosis almost 20 years ago and don't stray off of it much for the pain is not worth it. I've cut back on sugary foods, stay well away from pork, but eat some red meat. I mostly stick to chicken and some fish for my meats. I limit fat intake and avoid processed foods. I limit fiber, peel all my fruit and vegetables. When eating an apple I take my time to chew the food well, not doing so can and will create cramping.



Anything with seeds, including pop corn, corn, nuts unpeeled fruit and vegetables are forbidden foods. Vegetables must be peeled and cooked until soft.



I keep my portions small, and instead of 3 meals I have four smaller meals daily.


Every day I mix one teaspoon of Turmeric (from the seasoning section of the grocery store) into a glass of cold water between breakfast and lunch on and empty stomach and drink it.



Once in awhile I will cheat, and go for some favorite foods. Once in a while one must have a break.



Finally, manage one's stress. Stressors can elevate Crohn's very quickly.
04-09-2019, 01:47 PM   #5
Scipio
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I think diet can help, and in some people it can a lot. But one thing I know for sure is that no two Crohn's cases are exactly alike. For both diet and medication what works great for one might be a dismal failure for another, and vice versa.

For mild Crohn's the benefit from diet might be for some patients sufficient to manage the disease all by itself. But for someone with "pretty aggressive Crohns" I'd be reluctant to recommend a purely dietary approach. You probably need something stronger than that. I suggest you continue to work with your GI on optimizing the medication, and at the same time see what additional benefit you can derive from optimizing your diet.
04-10-2019, 08:01 AM   #6
Jonny84
 
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I agree that diet an help but in my opinion its not the cause or the cure - at least not on its own.

I've recently been having blood sugar issues so have started eating high fat low carb. I was extremely sceptical when I started as I felt high fat was bound to upset my Crohn's but its been to opposite - its worked out really well so far. Crohn's feels really settled.

As well as lots of fat, this diet also means no sugar and no gluten which seems to help a lot.
04-10-2019, 09:13 AM   #7
RenLPC
 
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Yes diet needs to be part of every person's medicine! Food can be just as powerful as prescribed meds if you take the time to learn what you are doing. Of course everyone is different, but the absolute best thing you can do for yourself is trial and error, keeping track of what you eat with a food journal (I had to do this over the course of several years). Keep track of everything including vitamins, drinks, and meds. Track your symptoms and bowel movement consistency.

I also very much like the comment about controlling your stress level, thank you! Self care in all departments is key.

Since everyone is different, you can't go specifically by what anyone else says works or doesn't work for them nutritionally. For instance, I don't do well with fish and probiotic supplements, but most of what you read on Crohn's Disease will tell you that those things should help.

Please don't discount nutrition as medicine if you have a digestive disorder.

I had a small bowel resection 11 years ago and have been healing myself with nutrition after several meds failed and after a lot of trial and error. I know not everyone can be completely off meds and I respect that. Read as much as you can, take everything into account, consult with your doctors, but most importantly (in my opinion), do your own research on your own body.
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Crohn's Disease, diagnosed 2006
Small Bowel Resection 2008
Previous Meds: Asacol, Entocort, Imuran
Curent Meds: appropriate nutrition!
04-10-2019, 10:50 AM   #8
Shmili
 
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Hi,

First I want to make it clear that I don't believe in diet (or for that matter anything that's not scientifically studied).

Now to my story: I'm 27 years old, I was diagnosed with crohns at age 11.

I was put on the SCD diet (by my mother) almost right after my diagnosis, I was doing semi good on it, however as a young kid it was very hard for me to adhere to the diet 100% (I did various thing at different times sometimes eating rice and potatoes which isn't legal on the diet etc.).

Then I switched to a different diet that was less restrictive but with lots of supplements which also worked somewhat but not perfectly.

I've been on medication (on/off Entocort, 6mp, asacol, metronidazole) as well all this time but my mother was really trying to limit the medication as much as possible.

At age 25 (married) I had a major flare, I lost moe then 40 pounds in 3 months ended up in the hospital and getting a picc line and taking TPN for about 1 and a half years (it was great not having to eat).

The TPN (actually i think it's more the not eating?) took some time to start working and I got frustrated, so after about 8 months on TPN I started the SCD diet again, however this time I am doing it 100% as I'm really not so used to eat that much after my time on TPN so it was much easier to restrain.

Then 3 months after starting the diet and about 11 months after starting TPN I was approved for Stelara (then a brand new FDA approved med for CD) and thats when I started feeling much better not sure if it is because of the TPN, SCD diet or the Stelara?

Now I'm off TPN for one year and still on the SCD diet (100%) and taking Stelara injections every 4 weeks and feeling generally good.

Please feel free to DM me if you have any questions.
04-10-2019, 10:53 AM   #9
Shmili
 
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Sorry I posted twice by mistake and can't find a way to delete my post so I just edited it.
04-10-2019, 08:15 PM   #10
Peggy H
 
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Hi,

Sorry to hear you're having a rough time. Like the others have said here, Crohn's is tricky to say this will work or that will work beyond each individual. I've had it for decades but only diagnosed about 7 years ago. For what it's worth, I've found holding to a routine of getting a solid night's sleep and minimizing stress are super important, but food has been the biggest trigger.
Keeping a food journal could help you notice what sets you off. Spicy food is a common problem, for example, and lactose. Your doctor could perhaps send you to a dietitian to give you some extra guidance to be sure you give your gut a good rest and then try reintroducing foods.
I also have had success with B12 injections monthly (because I'm missing the section of bowel that absorbs it) and a daily dose of Vit D and Vit C.
Take care and hope you're feeling stronger soon.

Peggy

noworries.home.blog
04-11-2019, 03:42 AM   #11
Delta_hippo
 
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Thank you so much everyone for your advice. I agree it seems to be necessary to go all in and commit in order to get results (if you're going to). I like the idea of a diary to monitor patterns. I will be doing this alongside meds because this disease has made me extremely ill in the past so I have to fight it on all fronts.

In terms of specific diet, I'm torn between SCD and perfect health diet (the latter is high fat, meat fish veg potatoes and rice, no sugar no gluten no grains). Just because the latter sounds slightly more doable and I read (in Jon Brisson's fix your gut) maybe more adrenal friendly after a year on steroids which I tapered a month ago. I have started building in earlier nights and more prayer and reading time and feeling a little better this week.

Has anyone tried PH diet and if so any advice?

Thank you all again so much, God bless you all xx
04-11-2019, 07:37 AM   #12
Jo-mom
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I agree that sometimes the meds are necessary especially when facing more severity. You should try the diet that you think you can stick with and then tweak it if necessary. Good luck and best wishes.
04-11-2019, 10:07 AM   #13
RenLPC
 
Join Date: Feb 2018
Location: Wexford, Pennsylvania
Hi,

First I want to make it clear that I don't believe in diet (or for that matter anything that's not scientifically studied).
OOF, that statement brings pain to my heart. It's ok, everyone has a right to believe and express what they want.

But... I do believe that diet has been scientifically studied, at least to a certain extent. Part of the reason why you don't hear more about it (unlike prescription ads that run 24/7) is because large companies don't have a profit to be made from people making themselves healthier with nutrition. I know this is conspiracy theory territory, but it's pretty clear by this point that money rules the world.

Medical professionals have written books (one example: Brain Allergies, by William H. Philpott, M.D. and Dwight K. Kalita, Ph.D.) referencing the fact that diet and nutrition are barely mentioned, if at all, in their medical studies. This is not because diet is ineffective, but because there's not enough financial motivation to dive into the subject.

I'm not an extremist, yes meds are necessary in certain situations, and paying attention to diet has to be necessary too. You know this from experience. I just couldn't resist a follow up to that.
04-11-2019, 12:43 PM   #14
Shmili
 
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OOF, that statement brings pain to my heart. It's ok, everyone has a right to believe and express what they want.
Hi RenLPC,

Sorry if I wasn't clear enough

I didn't try to imply that diet doesn't work (I'm on the SCD diet for almost 2 years now and not planing to get off anytime soon).

And I do understand the fact that there is a lack of financial interest to research none medical approaches to cure/treat illness.

I also understand that medication arn't the magic bullet for all, however when taking a medication I at least know what my odds of success are.

However, until there is credible published scientific studies about the effectiveness of diet in treating/curing CD/UC my "opinion" is that everyone should try whatever they feel comfortable doing but be informed that these are just based on anecdotal evidence and personal experiences.

My main point is that there will likely be big variances in the response between different people with different diets due to the lack of solid credible research.

Summary: When choosing treatment options, weigh the pros against the chances of benefit.

All the best and peace.
04-11-2019, 02:01 PM   #15
Nadia96
 
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I think itís what your body can handle. Like what causes flare ups and the upset stomach. Each person is different. Some say that a vegan diet will help. Some will say a gluten free diet will help. I think itís what you can handle and what your body can handle.

Iím a 23 year old woman having been diagnosed with Crohnís at 9 and I tend to stay away from dairy and processed food as I can get really ill. I also tend to say away from deep fried food as much as I can and I if I do decide to have a homemade burger or chips, that would be once a month as a treat. I did try a vegan diet when I was at university and it did help a lot. My stomach was at its best but I had to stop as it was getting expensive for me and also we donít that much vegan food here
04-16-2019, 09:43 AM   #16
positive_skeptic
 
Join Date: Apr 2019
Nutrition alone is not enough, though. It's the first step to remission but you MUST get control of your mental, emotional, physical and environmental stresses.

Keep in mind that conventional medicine only focuses on the symptom and not the cause. It's a very narrow-minded approach that leaves the rest of the body and its signs out of the equation. This is the reason most cannot get control of disease symptoms and it's a major failure in the medical system.

There's a reason natural methods have worked for thousands of years, literally. Do your research on places like PubMed.com, MyRebelliousColon.com, DrAxe.com, Mercola.com. There are MANY more sites but that's beside the point here.

Am I qualified to say any of this and how confident should you be in my words?

The proof is in how I live and what natural methods such as traditional Chinese medicine, relaxation techniques such as acupuncture and meditation (prayer and reading my Bible).

I was diagnosed in 07' with Crohn's disease. It came out of the blue like so many of you. It was a VERY confusing time. I couldn't understand why my body was doing this. The doctors told me there's no cure, no diet, no exercise or medication that will take it away. That's encouraging, right? (That's a whole other topic)

It took me years to figure this out but I now teach others what I've learned to provide hope and encouragement. Not to mention the possibility of remission forever!

This disease is no joke and if you take it that lightly you will NEVER reach remission. You cannot rely on other people to tell you what to do either. Take control of this disease, do your due diligence, research, research, research and NEVER listen to conventional medicine. They do not understand this disease (as is the case with many diseases).

Now, please don't get me wrong. I'm not saying there's not a place for conventional medicine. Most doctors are not out to harm you but to help you. That's why they became doctors in the first place. However, their education does NOT teach nutrition. It's not even a course that's included in most medical programs. I know this because I pursued a medical degree myself.

Look for medical offices that provide natural methods. There's plenty of resources on the web but BE CAREFUL about where you get your information.



Follow these people on Facebook, Twitter, Instagram, etc. and learn about these people and their methods, habits, teachings, etc. It will change your life!


Consider natural treatments such as acupuncture, chiropractic, Functional Medicine, Holistic and Integrative methods such as traditional Chinese medicine is amazing and it's been around for 3000 years. Think about how long medicine as we know it has been around. Not long!

Why mess with your health? Without it, you can't function, work, play with your kids, or do the things God created you to do. Life goes down the toilet without your health. (pun intended)

Take initiative today, take your health back!


Best Regards!
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