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08-16-2015, 07:42 PM   #1
Elizajp
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Discouraged about diets

I have been doing some version of SCD/GAPS/autoimmune paleo for nearly a year and a half with NO relief. I have fistulizing Crohns that hasn't been totally active but definitely nowhere near healed or in remission. I have tried to stay off the big gun drugs because I believe in these diets. But I've literally felt no relief. I've tweaked everything I've read about. Cut eggs. Cut nuts and seeds and nut butters and flours. I've tried intro diets. The only thing I've ever actually noticed is that gluten definitely makes me worse. I've been gluten free for years and will continue to be. But I'm kind of at my wits end. I'm so so tired of all the effort that goes into these diets while not seeing any results from them. I feel like all I ever read are stories of people getting insanely better or people just quitting the diets. I've never read of another person trying and trying for over a year and seeing no improvement. Am I the only one? What do I do? It's so hard to imagine going back to normal healthy eating when the paleo/WAPF logic has been so drilled into me (and I do believe it!) but I feel like it's just causing me more stress and not getting me any better. Any thoughts?
08-16-2015, 09:05 PM   #2
scottmyster
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I am sorry , but i do not believe in diets, there is no diet as per say for IBD. But there are some foods to stay away from red meats, diary, and spicy foods. Even though Yogurt is excellent for the bowel because it adds good bacteria to the bowel. Even if you google or ask any expert on IBD. there is still no diet. The only thing i recommend is keep a food diary of the foods that cause you grief and stay away from them. Believe it or not the foods that you are staying away from, may be of some benefit not all foods are bad. for example cutting eggs what for it's high in vitamin A and protein that is what the body needs, just don't fry them, just boil them. That is just one of many foods that are good for you and there are many more. Trust me i done my research, after 25 years with Crohn's disease i had remission for 10 years and i ate most everything , but i kept a mental diary of things that i could eat and things i couldn't and it worked like a charm.
Sorry you are having so much trouble i hope you find a happy medium.

best regards
scott
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Scott:

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Dx Crohns 1990
Present medication
Asacol 2400mg and prednisone and buscopan and demerol for pain
Supplements
Omega -3 fish oils
Probotic supplements
B100complex vitamin

08-16-2015, 09:15 PM   #3
Kristygedman
 
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Location: Boiling Spring Lakes, North Carolina
I am on Remicade and eat an AIP diet. I hope to one day stop Remicade due to my diet, but even my nutritionist believes without the Remicade I would be back to flaring a lot. Being a mother of 3 and working full time that was not do able. Do I believe eating like this will allow me to get off Remicade, yes. But I have a long way to go until that point.
Just like with everything with Crohns there is no right answer for everyone. You have to find what works best for you and run with it.

I hope you what works for you.

Kristy


08-17-2015, 05:01 AM   #4
J_Matrix
 
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I don't believe in the diet alone aproach either. I have had crohns for 30 years, and I have been to see many doctors / surgeons / consultants and not one of them has ever mentioned eating a specific diet. I have been told to eat what I like, but If I find something that upsets me, then I avoid it - simple. I tend to eat a high protein diet and fiberous vegetables are a no no.
Everyone is different and what works for one might not work for another. So by trial and error work out what works for you and stick to it, it really is the only way.
08-17-2015, 06:28 AM   #5
teeny5
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I don't believe in the diet alone aproach either. I have had crohns for 30 years, and I have been to see many doctors / surgeons / consultants and not one of them has ever mentioned eating a specific diet. I have been told to eat what I like, but If I find something that upsets me, then I avoid it - simple. I tend to eat a high protein diet and fiberous vegetables are a no no.
Everyone is different and what works for one might not work for another. So by trial and error work out what works for you and stick to it, it really is the only way.
I agree. My Dr told me there is no diet for Crohn's, but there are things that might bother me so avoid them. Common triggers for me are spicy, greasy, high fiber, and fried foods plus beef, lettuce, dairy, popcorn if eaten a lot. If gluten bothers you definitely stay away from it. I do feel better if I eat less gluten. If you enjoy eating a certain way I would continue unless something in that diet makes symptoms worse. Any diet that becomes stressful I do not agree with since stress is no good for the gut.
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Currently on: Colazal, Prilosec, multi-vitamin, probiotics, total EFA's, glucosamine.

Previous meds: Sulfasalazine, Asacol, Rowasa, Pentasa, Entocort.


"Adopt the pace of nature: her secret is patience. -Ralph Waldo Emerson"
08-18-2015, 10:29 AM   #6
Charlotte.
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I don't follow a certain diet either because I did not see any improvement on SCD/Paleo/Low Carb/Low Starch/Starch Solution/Grain Free/Vegan but I would recommend to give it a try, especially SCD which has been evaluated in various studies and showed effect on some people. To me, individual sensibilities seem to be much more important than general advice, so for me it's avoiding gluten, fruits, raw vegetables and lactose/dairy.
I could not see any diet preventing me from getting into a flare-up, so I don't think that diet alone is the solution.
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Crohn's Disease: diagnosed 2014 (at 24), symptoms for 10 years now
Enteropathic Arthritis, Sacroliitis, Osteopenia

Stelara; Uceris; Lansoprazole; Domperidone.

Previously: Remicade, Humira, Simponi, Azathioprine, Methotrexate, Sulfasalazine, Entocort, Uceris, Prednisolone, TPN, EEN, different alternative treatments.
08-20-2015, 07:20 AM   #7
InstantCoffee
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My doctor also told me diets don't work, meanwhile humira / remicade + prednizone did nothing and I've been much healthier the past 3 years with no medications eating a strict diet, so everyone is different.

The problem I have with most of the Crohn's diet plans is they avoid 100% of fibers, but we need fiber to regrow our gut bacteria and heal. It's not enough to just avoid trigger foods and eliminating inflammation, you need to feed the bacteria.

Those that cannot tolerate fibrous meals should supplement with powder-form resistant fibers.

A lot of SCD / GAP-illegal foods have been integral to my diet, like oats and honey because both have prebiotic properties.

I once made the mistake of going fiber free and at first I got better and as time went on the diarrhea and wasting got worse. It took half a year to recover from that state.
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Dx 05
Past drugs: Remicade, Azathioprine, Prednizone, antacids, Humira
Current therapy: Diet and supplements.
I'm my own guinea pig.
My log with studies, journal of my experiments:
http://www.crohnsforum.com/showthread.php?t=72046
My Blog
https://beyondtheoddsfitness.wordpress.com/
08-20-2015, 08:20 AM   #8
my little penguin
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Second the not diet alone
Diet can be an adjunct therapy
But without humira and mtx Ds would be a mess
( we had to hold meds due to infection and he turn into a mess even with diet - ended up adding Pred )
Currently he follows a modified diet
Partial en plus exclusive crohns diet
See papers on it here
http://www.crohnsforum.com/showthread.php?t=71686

Are you on any other meds ???
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08-20-2015, 06:09 PM   #9
Elizajp
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I am on prednisone right now to control a flare. Remicade stopped working and Humira never worked. I know diet doesn't always work, but there are some pretty powerful testimonials of it working for many, many people, often without meds. I guess I'm just not one of those people.
01-03-2017, 03:21 AM   #10
teddytutu2017
 
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I have been doing some version of SCD/GAPS/autoimmune paleo for nearly a year and a half with NO relief.
It takes a while to heal. Sometimes longer than two years.

But you should have had some relief by now, so best just to switch it up and try something else.

Or rather than being rash and changing everything, you may just need to fine tweak a couple of things diet wise.

A naturopath can guide you with this.

In 2014, I did a program called Heal Your Gut. And from there I was able to achieve ongoing relief.

So maybe you just need to re-valuate.
01-06-2017, 11:10 AM   #11
dave13
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I have been told by specialists that diet does not matter too. I find that statement incredulous to be made by a medical professional. We are all different,what works for someone may not work for another,to say diet has no influence on IBD is outrageous to me.

I follow the SCD and am fortunate it helps me. The reason I know it helps me is when I stray ie.,the past Holiday season,I suffer for it. I notice it most with my fistulas. Inflammation and drainage increase quite substantially. I also have more of the brain fog feeling with increased fatigue.

Yes,the SCD is a labor intensive diet,in my opinion. I suppose when you make everything from scratch,it would be. I find it to be an expensive diet as well. I do benefit from it so I look at it as investing in preventive measures.

I consider diet another tool we can use to fight IBD. Our bodies need the right fuel to heal. It can be difficult to find what works for us.

I guess I am railing about the 'diet doesn't matter' statement by the medical community. If you take them at there word you can stuff your face with fast-food burgers and soda,top it off with a pure sugar dessert every day for every meal and be fine. Really?
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01-12-2017, 12:35 PM   #12
wildbill_52280
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these diets are not meant to completely eliminate your symptoms. they are just supposed to help reduce them. Some people are more lucky then others with them.

I tested many of this advice and here what helped me control some symptoms i have diarhea under control for the most part but i still have fatigue and its pretty difficult my labs are all normal by the way. But i also take supplements and herbs and lialda(mesalamine). I have severe crohn's disease mainly in large bowel but also in small bowel.

Diet: no refined sugar, and low in natural sugar low lactose diet eat mozzeralla and parmesan cheese for calcium and take calcium supplement without any additives i use now foods calcium carbonate powder and put it into empty pill caps.
some wheat, home cooked refried beans, oatmeal with cinnamon. overcooked broccolli, cauliflower and spinach. The diet is hard to follow but easier then following SCD to a "T". I dont use SCD yogurt its very hard to make correctly maybe its the starter I use not sure one brand seemed to work well while another by yogourmet did not, natren with true bulgarian strains of bacteria may have worked the best have retested this yet to make sure. I don't eat any meat or butter. I never eat during the 5 hours before bed. i eat 3 frozen crannberries a day in my oatmeal and occasionaly throw in frozen raspberries or strawberries. so i still eat fruit just on low amounts. i eat one apple per week, one lime per week and sometimes white grapefruit and lemon. i eat 5 walnuts and 10 pistachios per day, i get fat from canola oil. Onions and garlic i eat once every few weeks they seem to upset me for low fod map diet.
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01-20-2017, 11:56 AM   #13
Scipio
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I have been told by specialists that diet does not matter too. I find that statement incredulous to be made by a medical professional. We are all different,what works for someone may not work for another,to say diet has no influence on IBD is outrageous to me.
According to the IBD specialists I know it's not that diet "doesn't matter." It's that, with one major exception, diet cannot treat the underlying disease. In the absence of other therapies (biologics, immunomodulators, etc.) diet may lessen the symptoms and make the patient feel better, but the underlying disease will continue to progress.

The one major exception where diet does matter in the treatment of disease is in avoiding high fiber foods in the case of significant strictures. Avoiding a blockage at a stricture due to fiber is hugely important.

As I mentioned, diet can certainly make many patients feel better even when it doesn't affect the progression of the disease. And that of course is hugely important to us patients. Reducing the symptoms and feeling less sick is the main goal of most of us patients. It certainly is to me.

And one more way in which diet is important is that it is the one thing that is under the control of the patients. Drugs and surgery are under the control of the drug companies and doctors. But diets belong to the patients.

So no one should ever get the idea that diets don't matter. They should just be realistic and understand that the diet that is making them feel better is not actually stopping or slowing their disease. For that they still need more powerful therapies.
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