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Crohn's Disease
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Posted 2/22/2013 11:28 PM (GMT 0)
How many really do better on a gluten free diet? Or even a grain free diet?
Posted 2/22/2013 11:41 PM (GMT 0)
I don't know the statistics, but if your son is willing to give it a shot, I think it's worth trying a gluten free diet. It helped me a lot.
Posted 2/23/2013 1:22 AM (GMT 0)
So glad to here it worked for you.  He has been gluten free for 5 months, except for maybe 3 occasions a small piece of bread. We also put him on probiotics at the same time we cut out gluten.  He only normally goes 2 x a day but has been flaring a lot lately, so not sure it really helps. I may try him on Citricel or Metamucil.
Posted 2/23/2013 1:50 AM (GMT 0)
I am on the fence about gluten free. I am not in a flare so I can't comment to how much it helps. I stay relatively gluten free though. Some of the stuff I've read say that it's harder to digest, and can help give the digestive tract a rest. My naturopath says that it can do damage on a microscopic scale, so while I don't see a difference one way or another it's helpful to stick with it. I just haven't run across anything that explains it to my satisfaction. So I cheat one or two times a month.

How did your son feel after eating some gluten? Any increase in symptoms?
Posted 2/23/2013 2:16 AM (GMT 0)
After going gluten free in just days it lessened his bm's to only 1 or 2 a day...good yes...but on and off light bleeding and now some clots persist.
Posted 2/23/2013 5:54 PM (GMT 0)
Stopping eating gluten was quite life changing for me in terms of how many times i went to the toilet, i went from going many times a day to only going several times on a morning which is normal for me. That said i wan't flaring when i stopped eating it and i am now having a flare up and going more time than usual. I still think i would be much worse if i wasn't gluten free.
Posted 2/24/2013 2:25 AM (GMT 0)
Sounds like being gluten free helps with your son's symptoms! Seeing results like that I'd stick with it.
Posted 2/24/2013 2:53 AM (GMT 0)
I asked my doctor if I had celiac disease instead of crohn's, he said no celiac, he said I have crohn's.  When biopsies are done, they can tell it's crohn's patches.  Apparently they can do a blood test for celiac, according to my friend..  I'm sure the doctor checked your son for celiac disease. 

My friend has it, and lent me a book called Wheat Belly by William Davis.  I just started reading it, and he explains that our wheat is not like our grandma's, today it is hybridized and chemically altered saying we are reacting to that. 

I've only read a couple of chapters so far,  so I'm not sold on a gluten free diet just yet.  Will keep reading.  If your son feels better on a gluten free diet, then he should continue to do what he's been doing.

Posted 2/24/2013 3:37 AM (GMT 0)
My sister read that book and never wants to eat wheat again. It definitely lessened his number of bm's a day. However, his bleeding when he goes won't quit and his doc won't give him enemas!!!
Posted 2/24/2013 4:32 AM (GMT 0)
Dawn I noticed that your son takes coconut oil, what does it do for him, does it help him with inflammation or gaining weight?

The doctor should really get his bleeding under control, there must be something that will help him.
Posted 2/24/2013 10:28 AM (GMT 0)
I've read a lot of good on virgin coconut oil, it kills extra yeast and bad bacteria. I am so frustrated with his doctor, he won't give him the enemas and he keeps trying Flagyl (which makes him go more) and suppositories that don't reach far. I read in another post make enemas from distilled water and vsl#3 and it helps. So I might try it and find a new doctor. He has a colonoscopy in a week and I'm gonna push hard. I'm afraid he is gonna use say Prednisone before trying enemas. Help!
Posted 2/24/2013 12:58 PM (GMT 0)
Please be a bit careful with vsl#3. Although there is some research that shows that it helps, there is also research that shows it can throw someone into a bad flare.
I use homemade probiotic yogurt instead. way cheaper and stronger, and much less risky. Although even with this approach there are some that it negatively impacts.
I am a firm believer in probiotics but you need to proceed with cation and listen to your body
Healing thoughts
Dave
Posted 2/24/2013 1:56 PM (GMT 0)
Dave - I understand what you are saying about VSL#3, if you can't tolerate it then try RenewLife ultimate flora critical colon. There is one bacteria in VSL#3 that is not in RenewLife's and it can mess you up, it is also in commercial yogurt.  Jordin Rubin warns against it in his book - Garden of Life founder.  Thank you for your input! 
Posted 2/24/2013 5:09 PM (GMT 0)
Your DR won't prescribe enemas for your son? Does he have inflammation in the rectum? If so, then you need a new DR.
Posted 2/24/2013 11:24 PM (GMT 0)
I know right?  His worst inflammation is in the sigmoid and descending colon, left sided.  I am going to make probiotic enemas and slippery elm/marshmallow root enemas and get a new doctor.  The doc gives him Canasa, but that only helps the lowest.
Posted 2/25/2013 3:34 AM (GMT 0)
I was on Flagyl for a long time as well. It didn't help me much so eventually the doctor took me off. I can't remember much about it because it was one of the first things he used next to the prednisone but do remember it gave me a metallic taste, and ruined my appetite.
Posted 3/6/2013 10:13 PM (GMT 0)
I just saw this post it's been a while hopefully you will see this. I was tested by several Dr's and do not have a gluten intolerance, however when I had my IGG test done it came up positive for wheat and yeast, along with 14 other foods. the wheat was fairly low but the yeast was as high as it can get. A little looking into it I found that 60-80% of crohns patients have a yeast intolerance. Google ASCA and crohns. Anyhow, gluten free helps me a lot but the yeast is the real killer. Obvious sources like breads but also anything aged or fermented, think cheese, vinegar etc. MSG, citric acid, anything that is hidden msg like autolyzed or hydrolyzed anything, yeast extract etc. Also I thought I couldn't eat most fruits and veggies, turns out it was bc I generally went with the softer ones thinking they would be easier to digest. WRONG you know what makes them soft? the yeast is already breaking them down. I couldn't eat salad, for one all the dressings contain vinegar and or yeast and MSG, two I always went for the bagged salad mixes and bc of the yeast I have found I cannot eat anything that has been cut or prepared for more than 24 hrs. So it is really hard to get used to but for me eliminating the yeast and going to basically a paleo diet and making sure my food is prepared and stored properly(If I am not going to eat it that day I freeze it) Has made a huge difference in my life. Now I am basically symptom free for over two years, except for when I cheat(it is soooo hard to avoid real food lol) and a little cheating only causes minor frustration but a little MSG causes real pain.
Posted 3/8/2013 5:37 PM (GMT 0)
Also, to note as your son was better but is flaring again, After my allergy test was positive for wheat and yeast I went gluten free and was using almond flour, everything was great for months and then I developed a reaction to almonds. Now if I eat a single almond I will get severe D within about 30 min of eating it. I also spoke to a mom who said the same thing happened to her son after allergy testing he was doing great with his diet change, they had switched him to oats and after a while he developed a reaction to the oats. So a varied 4 day rotation diet of food he can tolerate reduces the chance of developing new reactions. It is often the foods we eat most often that we develop the reactions too since even though we are doing better we still have increased intestinal permeability.
Posted 3/9/2013 7:14 AM (GMT 0)
Dawn, what was the colonoscopy result?
Posted 3/10/2013 2:48 PM (GMT 0)
The Specific Carbohydrate diet is Gluten free and much tastier. The book - Breaking the Vicious Cycle is worth the read.
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