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Thanks for this post. I just found this site tonight and was excited to see information about a holistic & dietary approach. My 12 yr old son was diagnosed with Crohn's this summer. Prior to receiving the diagnosis, we pursued all the tests for celiac disease and stool testing for food allergies. We went this route because he has several cousins with celiac & gluten & daily problems. His stool tests came back highly gluten & dairy intolerant. Our GI doc didn't want to even look at the results or even talk to us about diet, probiotics or supplements and only would recommend an immunosuppressant drug, Imuran. He has been off prednisone for about 3 weeks and we elected to not take Imuran at this time. He has put 13 lbs back on and is eating gluten & dairy free. We are hoping this holitic approach will help keep him in remission and will spare him from taking potentially harmful drugs.
Hi Teresa,
I'm glad you found this post helpful. It's very rare that people actually have an allergy to a food and the blood tests are notoriously lacking in being able to identify an intolerance to a food.
I'm glad to hear your son is doing well. And even though eating gluten and dairy-free can be difficult it really is preferable to being on Rx medications with such nasty possible side effects. Now, that said, to be sure that if he seems to back-slide at all in his weight or have any other new or recurrent symptoms of the Crohn's that you talk to his GI.
It can be hard to find a GI doc who will take a more dietary approach into account for one reason - they aren't taught this in school so they really don't know much about the food/gut connection. You may want to see if you can find an Integrative medicine physician in your area who works with IBD. I've found the one I found here in Colorado to be very helpful and honest when he's getting into an area he's not completely comfortable with.
You're doing great!
Cheers,
Elizabeth
Thanks for the encouraging words. I haven't heard of a Integrative medicine physician so I will check into that, but he is being seen by a family practice m.d. who practices holistic medicine. This is where we've received guidance on nutrition and supplements. We have our 1st follow up with the GI doc Monday and although I've talked with the nurses letting them know we are holding off on the meds, I'm not sure that has reached the doctor. I'm a bit nervous about the appointment and wonder if he will want to keep us as a patient if we aren't taking the drug he recommends. We'll see how it goes.
Teresa,
If you've found a family physician who is on board with the nutrion/diet plan that you're on then stick with him or her. I was just giving a suggestion of another type of doctor you might try.
Re: the GI doc - remember, you are in control and no doctor can force you to take a medication as a condition of him keeping you or your son as a patient. If a doctor were to do that, I would actually suggest finding a new GI as that is not what you're looking for. Even though I said GIs aren't schooled in nutrition and diet more and more of them are learning today that diet does and is playing a vital role in the treatment of both crohn's and colitis. So, in all honesty you really aren't doing anything that's Holistic, you are doing what is realistic and in line with where medicine is going. I'd recommend that you not use the word Holistic with the GI as it can be off-putting to them and really diet and nutrition is not holistic medicine it's simply nutrition.
As long as your son is doing well there would really seem to be no logical reason to start the Imuran at the moment anyway. Imuran is typically given as a last resort when a flare-up does not respond to other treatments.
Best,
Elizabeth
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I also started a GF diet 2 weeks ago. Already I am starting to notice decreased symptoms from my latest flare-up that sent me to the ER. Grocery shopping is a little pricey, but it's SO worth it if this actually works.
Good luck with the diet Elizabeth!
Hi SW,
I agree, GF is more expensive, but after 3 months of it I'm figuring out how to make my own baked goods which is great because buying the alternative flours is much less expensive than buying mixes or already made GF breads.
There's a really helpful magazine called Living Without - www.livingwithout.com - that for those of us who are GF, etc. Check out their site an sign up for their recipe emails. It's been really helpful to me.
I'll be writing a new Sharepost about how things are going. It should be up early next week.
Hope things for you continue to improve.
Cheers,
Elizabeth