21 replies to this topic

[GFmom144]

I need some help. My daughter has been Gluten free for about 5 years or so we think. About a month or so ago she started having belly pain again. She had her blood work and her numbers for gluten were up. We are re-evaluating everything to make sure she is gluten free and no CC happening. They gave her levsin to take to help the belly pain about a week ago. The medicine does not seem to be helping and now we are having behavior problems. Has anyone else taken Levsin and does it work? Could it be causing the behavior problems? Could she be getting traces and can that cause behavior problems? Any one have any suggestions? My daughter is only 8.

Very confused Mom

[eatmeat4good]

I don't know about the medication.

But yes for sure gluten traces can cause behaviour problems.

You might have to check out the school situation very carefully.

and if you are a gluten eating home...maybe have everyone go gluten free for her sake if you can possibly swing it.

She may also be dairy intolerant...but then that wouldn't make the blood tests show elevated gluten. It would however cause tummy distress.

It's frustrating. You might have to keep a food diary for her and go through all products in the the house.
She is getting it from somewhere.

[dilettantesteph]

Some celiacs are sensitive to lower levels of gluten than others. More sensitive ones can have problems living in a house with gluten, using gluten containing soaps and toiletries, or even eating processed foods. You may need to make some changes.

Some become more sensitive to lower levels as time goes on.

My son was diagnosed at age 10 and couldn't get better until we made our household gluten free and eliminated almost all processed foods from his diet.

I hope she feels better soon.

[beebs]

Could it be something else? My eldest has been gluten-free since December his stool and malabsorption seemed to have resolved but his severe gut pain never did - a biopsy found it was gastritis, the Dr said overproduction of stomach acid leaky gut etc. The medication he was originally on cause psychiatric problems in him and I found out that it was not uncommon. So maybe check the medication she is on?

Or maybe she has become intolerant of something else and is malapsorbing again? Jeez I hate when the kids are the ones affected - its so hard to work it all out.Good luck!

[Roda]

Does she eat gluten free oats? Around 10% of celiacs have a problem with gluten free oats also. I am one who does. I also had to eliminate any gluten free products that that might or does have gluten free oat contamination. For me, I believe it caused the same, if not worse, reactions as gluten. I had a repeat scope and biopsy 1 1/2 years after I was diagnosed because I was having such problems. It didn't show any villi blunting that time but it did show a gastric ulcer and inflammation in the esophagus, stomach and small bowel. I really think it was from the oat issue and for me symptoms took awhile to build up since I was fine for the first year. What kind of products do you buy/use?

[Sam'sMom]

I just posted a question on this in the parents category of this forum - my son is also still experiencing stomach aches 2 months after getting off gluten. Is there a period of healing where it would make sense for the stomach to still hurt? It sounds like in your cases, this hasn't been the case. I worry for him and want him to feel better after making this drastic life change. He's not eating oats as we've found them to cause a reaction. Does anyone know if a really high blood result would equate with more sensitivity to gluten.

Thanks

[Roda]

I just posted a question on this in the parents category of this forum - my son is also still experiencing stomach aches 2 months after getting off gluten. Is there a period of healing where it would make sense for the stomach to still hurt? It sounds like in your cases, this hasn't been the case. I worry for him and want him to feel better after making this drastic life change. He's not eating oats as we've found them to cause a reaction. Does anyone know if a really high blood result would equate with more sensitivity to gluten.

Thanks

What kind of gluten free products is he eating? If he is sensitive to oats you have to worry about the oat cc in gluten free products. They don't test for this. I had to call companies to find out if there were any gluten free oats used on shared equipment. I definately would avoid Bob's Red Mill products. They get me every time!

[Sam'sMom]

Yes Roda - he has not a good response to gluten free steel cut oats from Bob's Red Mill. Do you not trust any of their products as far as all the gluten free flours and everything? I have a pantry full of this stuff now. I also use Gluten Free Pantry, and Namaste, and have just tried Bisquick for their pancakes. Mostly Udi's bread.

Any other suggestions for flours and baking goods if not Bob's?

Thanks

[Roda]

Yes Roda - he has not a good response to gluten free steel cut oats from Bob's Red Mill. Do you not trust any of their products as far as all the gluten free flours and everything? I have a pantry full of this stuff now. I also use Gluten Free Pantry, and Namaste, and have just tried Bisquick for their pancakes. Mostly Udi's bread.

Any other suggestions for flours and baking goods if not Bob's?

Thanks

Unfortunately I am inclined to say yes to not use any of the Bob's products. After 8 months of miserey last year my GI wanted to put me on steroids. I refused. I did accept a script for creon and took it along with further eliminating stuff from my diet. I had been using BRM products since diagnosis and was fine for a year. I think it slowly built up for me. I had an adverse reaction to BRM gluten free oats 7 months post gluten free but did not give the cc from them any thought until I was facing steroids. I got better and was able to quit the creon last Nov. I bought some baked goods from a dedicated gluten free bakery in Jan. of this year in Downtown Disney. I knew ahead of time they used flour/meals from BRM. I paid for it dearly. The good thing that came out of it is that I confirmed my suspicion.

As for products I do use and haven't had any problems: King Arthur gluten free mixes, Betty Crocker gluten free mixes and Ener G products(I have not called any of these to confirm, but I haven't reacted yet), Udi's bread(we eat all the time) I did contact and here is what they said:

I checked with our bakery and was informed:

At this time the oats are only used on our granola side. We use a separate mixer, we use different ovens, and different sheet pans. Of course anything is possible, but it is very unlikely since it is a separate plant within the plant. We do however store them in the same warehouse (unopened) and there is a common wash area.

So there is very little chance for cross contact but not impossible.

Feel free to contact me if you have any further questions and have an Udiful day,



Declan Galvin

Marketing Coordinator

dgalvin@udisfood.com

Sent: Tuesday, December 21, 2010 3:42 AM
To: Customer Service
Subject: Udi's Contact Form


Message:
Is there any chance your bread could have cross contact with your certified gluten free oats?

I have used Gluten Free Pantry and Namaste in the past but not since last August. You could call and find out though. I will try and contact the three companies that I listed first just in case. For me there is always room for improvement.
I had quite of bit of BRM products to get rid of. I had a few people at work I knew would use some of the stuff so I gave most of it away. The other unopened stuff I donated to the local food bank.

[Sam'sMom]

Just surprised as I thought they were a better brand. Did you contact them to find out about their methods? (BRM that is) Just curious.

[Roda]

Just surprised as I thought they were a better brand. Did you contact them to find out about their methods? (BRM that is) Just curious.

Yes I did contact them and they do run the gluten free oats on shared lines. I hope I remember this correctly: they said they have a clean down process between each product run with high powered air. Then they discard the first 20# of the product before packaging. Unfortunately this is still not enough for me. BRM is a great company and offer a lot for people with celiac/gluten intolerence. Unfortunately I'm in the minority with the oat reactions.

[Roda]

Sam'sMom, I just e-mailed Ener G, King Arthur, and Betty Crocker. I will post back when I hear something.

[livingGfree]

Hi,
Ive found that along with a gluten sensitivity, I also have a cross reactive type issue with most all other grains, including those most commonly use in all gluten-free products such as millet, quinoa, potato flour/starch and sorghum.

It may be that your son is having issues with some of the other ingredients. My ND had me tested (it's a cross reactive test but I can't recall the lab off-hand so I'll dig it up for you and repost).

You may try eliminating the gluten-free items for a bit and see if that helps. Good luck!!!

Unfortunately I am inclined to say yes to not use any of the Bob's products. After 8 months of miserey last year my GI wanted to put me on steroids. I refused. I did accept a script for creon and took it along with further eliminating stuff from my diet. I had been using BRM products since diagnosis and was fine for a year. I think it slowly built up for me. I had an adverse reaction to BRM gluten free oats 7 months post gluten free but did not give the cc from them any thought until I was facing steroids. I got better and was able to quit the creon last Nov. I bought some baked goods from a dedicated gluten free bakery in Jan. of this year in Downtown Disney. I knew ahead of time they used flour/meals from BRM. I paid for it dearly. The good thing that came out of it is that I confirmed my suspicion.

As for products I do use and haven't had any problems: King Arthur gluten free mixes, Betty Crocker gluten free mixes and Ener G products(I have not called any of these to confirm, but I haven't reacted yet), Udi's bread(we eat all the time) I did contact and here is what they said:


I have used Gluten Free Pantry and Namaste in the past but not since last August. You could call and find out though. I will try and contact the three companies that I listed first just in case. For me there is always room for improvement.
I had quite of bit of BRM products to get rid of. I had a few people at work I knew would use some of the stuff so I gave most of it away. The other unopened stuff I donated to the local food bank.

[GFmom144]

Unfortunately I am inclined to say yes to not use any of the Bob's products. After 8 months of miserey last year my GI wanted to put me on steroids. I refused. I did accept a script for creon and took it along with further eliminating stuff from my diet. I had been using BRM products since diagnosis and was fine for a year. I think it slowly built up for me. I had an adverse reaction to BRM gluten free oats 7 months post gluten free but did not give the cc from them any thought until I was facing steroids. I got better and was able to quit the creon last Nov. I bought some baked goods from a dedicated gluten free bakery in Jan. of this year in Downtown Disney. I knew ahead of time they used flour/meals from BRM. I paid for it dearly. The good thing that came out of it is that I confirmed my suspicion.

As for products I do use and haven't had any problems: King Arthur gluten free mixes, Betty Crocker gluten free mixes and Ener G products(I have not called any of these to confirm, but I haven't reacted yet), Udi's bread(we eat all the time) I did contact and here is what they said:




I have used Gluten Free Pantry and Namaste in the past but not since last August. You could call and find out though. I will try and contact the three companies that I listed first just in case. For me there is always room for improvement.
I had quite of bit of BRM products to get rid of. I had a few people at work I knew would use some of the stuff so I gave most of it away. The other unopened stuff I donated to the local food bank.

I use the Bob's flour all the time I wonder if that is my daughter's problem. I have gone back thru all our products and right now I am only letting my daughter eat food that is made in a dedicated faculity. I am going to switch flours and see if that helps. We are also taking her to a allergist to see if they find anything. Thanks

[GFmom144]

I don't know about the medication.

But yes for sure gluten traces can cause behaviour problems.

You might have to check out the school situation very carefully.

and if you are a gluten eating home...maybe have everyone go gluten free for her sake if you can possibly swing it.

She may also be dairy intolerant...but then that wouldn't make the blood tests show elevated gluten. It would however cause tummy distress.

It's frustrating. You might have to keep a food diary for her and go through all products in the the house.
She is getting it from somewhere.

Thanks, I am going thru everything and only letting her eat things from a dedicated facility. Her behavior has been better this week so maybe it was gluten again. I am also taking her to the allergist to see if she has a food allergy to something. Thanks for the help.