Did you change your diet?

[sheryl8484]

I have to start by saying this is an amazing site.. I have been learning so much.
I would just like to know if any of you have changed your diet after being Diagnosed? I was just officially diagnosed with Crohn's yesterday but I have been sick for years.. I don't eat that great. I have done weight watchers on and off for years but I just have trouble eating healthy.. My Dr made the comment that many people with Crohn's may also be gluten intolerant or have to go dairy free.. He said that it may not be a bad idea for me to try this out to see if these foods may cause my symptoms to get worse..what are your experiences with this?

I'm a little nervous because I just started taking a steroid which I hear makes you want to eat a lot so I'm not sure i can even commit to this kind of diet..

I have also been having a bad experience with my family's response to this whole diagnosis and experience. They live in a different state (thank goodness) but unfortunately their words hurt.. There is a lot of things being thrown around.. " you probably just have to stop eating gluten, that's what I had to do and now I'm fine". "Maybe your Dr is wrong, have you ever thought of that?" " my friend has crohn's and after she started taking medicine she was fine, now she can eat what ever she wants."

Wow, that was harder than I thought. Talk about feeling lonely..

So I guess I just want to hear your experience.. Did you try this? Did it make a difference? Thanks for your help..

 

[Crohn's gal since 1989]

I'm lactose intolerant and my GI said a lot of cd people are. I drink lactose free milk and eat lactose free yogurt. I can tolerant cheese fine, unless I am in a flare. When on meds I can eat anything I like, even the usual suspects: salads, broccoli, cabbage, etc do not bother me.

I currently have a stricture and am waiting for surgery(end of Oct) because of this I have to be on a low residual diet right now.

 

[Grumbletum]

Hi Sheryl
I can totally identify with your feeling of loneliness. I think a lot of people feel that when first diagnosed. You don't really understand the disease yourself and others ( my son was one! ) thought I was exaggerating things. Even after diagnosis, people didn't really get the fact that this is a chronic disease and thought that I was being fussy and faddy about food. Luckily, I have a couple of friends who have IBS and although it's not the same thing at all, they have to watch their diets and were sympathetic and helpful. So you have lots of friends on here who will help
I tried the Low Residue Diet first but it didn't help, then tried the SCD diet which did as it eliminates gluten, caffeine, sugars and complex carbohydrates and yeast which all seemed to be triggers of pain for me. Now in remission after surgery, I can tolerate a lot more things but still feel better if I avoid caffeine and sugars. Have had to add fatty foods to my not to eat list as a result of the surgery and the removal of my IC valve.
Yes, taking steroids does tend to give you a huge appetite. However, it does also tend to make you feel better so being more active and taking gentle exercise such as walking can help to keep the weight off.
If you pop over to the Diet and Fitness subforum, you'll find lots of experiences and ideas on there.

 

[shamrock15]

I do a low residue diet, have for 25 years. I have been able to expand it a little, but still stay almost veggie free. A little dairy is good for me and has kept my bones pretty strong through large amounts of pred. Have definitely found that as I age, my tolerance for really sugary food (soft drinks especially) has dropped.

 

[hbrekkaas]

I've had to change my diet, from eating anything I wanted to not being able to eat gluten, oats, dairy, nuts/seeds, rice, or veggies (I do juice them though). I also try to stay away from anything greasy or sugary. The gluten and dairy were cut out first, about a year ago when they thought I had Celiacs and IBS, the rest of the changes have come recently.

If you decide to cut out dairy/gluten its not as awful as it seems. Its overwhelming at first, but after awhile you just get used to it. And if it makes you feel better then its huge motivation to keep going, no matter how much you miss your old ways of eating.

 

[hbrekkaas]

And as for the family members "advice".....smile and nod, and ignore it all. I think every Crohn's patient has people who know how to "cure" them. People don't seem to understand that its such a individual thing, and what works for one will not work for everyone.

 

[sheryl8484]

Thanks for all of your input.. To those of you who are following the gluten free lifestyle could you please share some common foods that are gluten free. Such as Chex cereal. I guess I should say brands that are more commonly known. I tried going to whole foods and I was just so overwhelmed. I am an extremely picky eater and all of the gluten free food just looked un appetizing. In the meantime I'm trying to stick with meat and veggies but that can be hard.

 

[Charleigh]

I can imagine that it is rare for a Crohn's sufferer to be able to digest lactose. I think milk protein in general is not a good idea. I would start with a basic dairy and gluten free diet. E is beef, dairy, and gluten free. It helped E tremendously.

 

[Kayla612]

I have been eating gluten free fir six months now and I usually shop a lot in the gluten free/organic aisles in grocery stores. I am extremely picky as well, but you wouldn't believe all the great things there are out there. I get Udi's bread in the frozen section, along with their bagels and buns. Glutino also has some yummy snacks and there are tons of yummy options for gluten free pasta!

 

[Plissken]

I was diagnosed in January and for the first time I had something to google and find out about what most crohns sufferers can and can't eat. It has changed my life and I feel the best I have in 2 years (since my problems began)

My doctor told me to avoid all fruit and veg and things that contain vegetable oil and stick to a low fibre/low residue diet. It has been a revelation. I obviously have to take various pills and other nutritional substitutes, but I can live a near normal life like this. My stricture feels like it has healed, so I have avoided surgery which has been a very pleasant surprise.

I did actually try gluten free stuff for a while, but it doesn't seem to make any difference for me. I do drink soya milk rather than cows milk, the latter doesn't cause me too much bother but I actually prefer soya milk now i've been on it so long