Gluten

[Supermom]

My son has been tested for Celiac three times and the result is negative. Has anyone cut gluten totally out of their kiddo's diet? Has it been successful? Do you feel gluten really affects or creates symptoms to the Crohn's?

Thanks!

 

[Dexky]

Why has he been tested for Celiac three times?

We have done gluten free for 9 months or so but I can't really say it has helped. It hasn't hurt though so we'll continue at least until this year's scopes.

 

[my little penguin]

DS has been on and off gluten since age 1.
Three tests as well for celiac prior to Ibd dx.
This last time he was gluten free corn free soy free milk free for over two months.
It did nothing for his crohn's symptoms.
Only when he was EEN - no foods on oral peptamen jr only for 9 weeks did it help.
I highly recommend EEN then later weaning to 1/2 dose of en plus food.
Good luck

 

[Momto2girls]

My daughter has been tested 3 times, too. The GIs really think/thought it was Celiac. I do think she does a little better without TOO much gluten -- I just think gluten is sticky and tough to get through an inflammed intestinal track. But we are doing strict GF right now and it isn't helping. At all.

 

[Jmrogers4]

We are little to no gluten here, have only been doing it a few months so can't say if it is helping or it is the meds helping. I figured can't hurt.

 

[Supermom]

Thank you all for your replies!

 

[Twiggy930]

We did gluten and lactose free for about 2 months and it did nothing for us.

 

[jmckinley]

We did gluten, dairy, corn, soy, potato, sugar free for 10 weeks. While we felt great, it did nothing for Ryan's bloodwork. We are going to start with a modified plan again now that he is in remission and see if it is just icing on the cake!

 

[my little penguin]

One thing to keep in mind-
Replacing wheat with rice can be a problem in the US.
Rice products contain high amounts of arsenic( even organic brands)
So if most wheat products are replaced with rice well ...

Our resulting analysis of 3,633 study participants found that on average, people who reported eating one rice food item had total urinary arsenic levels 44 percent greater than those who had not, and people who reported consuming two or more rice products had levels 70 percent higher than those who had no rice.

http://www.consumerreports.org/cro/magazine/2012/11/arsenic-in-your-food/index.htm

 

[Charleigh]

We are grain, sugar, and dairy free and it has helped tremendously with symptoms. We just had labs rechecked and I will be curious to see how those look.

 

[KWalker]

I am doing the same diet as Charleigh's family and having the same success so far (She's been on it longer than myself). I never thought diet affected my crohns but seeing the difference in going to the bathroom even after just a few days it really opened my eyes.

 

[QueenGothel]

I have had a different journey than many on this forum. I just wanted to add that removing Gluten did seem to help a lot with excessive gas and diarrhea. My dd lost weight on the diet and her Doctor felt it wasn't helping her but hurting her. We went off of the diet and the gas and D came back with a vengeance. So regardless of the choice to switch diets it was defiantly more painful for my dd to be on gluten then to not. While going through a trial period I would like to suggests some nutritional shakes be introduced while you are trying to get recipes tweaked and things you can find that they like. I have always found that avoiding processed foods to be very helpful. I also found that putting myself on the diet with my dd defiantly made the process quicker on getting her foods to be more paletable/tasty. The GF diet is a lot more constipating if you are baking GF and replacing processed foods with GF processed foods.

 

[TGM4AU]

My brother was dx with UC in 2011 and he decided to go Gluten free, and really helps him stay in remission. My daughter is 6 and we are currently in the process of trying to find out her dx. We are considering going Gluten free ourselves because of my brother's success with it. The trick though, you have to go totally Gluten free to see real results. The problem is that is really hard to go totally Gluten free with children because of the possibility of not getting enough nutrients. But our thoughts are, she is not getting the nutrients anyway during flare ups. We are in the process of finding a great multivitamin for our daughter to take along with the diet. Also, be prepared it is very costly to go Gluten free and beware of labels that claim to be Gluten free it is not always the case. Hope this helps!

 

[Samboi]

I have been dairy and gluten free for about a month now.
It's taken awhile - but I don't have mouth ulcers for the first time in a long time - like years.
My fissure is still not great - but one step at time.

 

[Irene3]

All these replies that say it made no diff at al, is exactly what my gi says. That crohns has nothing to do with dairy- gluten etc. but many do say it helps with symptoms, so it may be harder for those to digest such foods in the first place. I don't believe diet can help all that much, maybe just with some symptoms, but meds, and I guess if your son dosnt seem to tolerate gluten or dairy or whatever, as well, in combination may place him in remission. Do you keep a food diary for him. It may help to try it for a month, and see if his symptoms improve. Best wishes xoxo

 

[jmckinley]

Yes, gluten free is expensive. I know in our case, my son and husband could eat twice as much food without getting full too, so I had to double everything. Plus I had to have leftovers for Ryan's lunch. It seems like I was in the kitchen all the time too!

About the rice, isn't that just the luck? They always come out with a study that shows what we thought was good for us is actually bad in some way. What's a girl to do?