still getting gluten...

[mg12061]

So glad to see this site is still getting people posting. I read but don't get a lot of time to post. I have really liked listening to the Gluten Summit. I wish it was available longer. It's a little pricey to buy it for long term.
Anyway I have a question... Has anyone had a difficult time getting their numbers down. Kathleen continues to test as getting gluten in her diet. Not real high a little high. Also she has hypothyroid (and crohn's so she has 3 autoimmune diseases) Her GI Dr. tested her thyroid antibodies last week and he said her levels were very high which points to Hashimotos disease. A thyroid autoimmune disease which just makes it harder to control the thyroid hormone levels and can cause inflammation. Anyone else dealing with these issues?
Mary Grace

[GFStephanie]

Yes. Have you tried a diet of whole foods and unprocessed meats? That was helpful to us. Have you seen the paper of Hollon and Fasano which shows a group who responded to such a diet. Only registered and activated users can see links., Click Here To Register...

[annelb]

Have you looked at the SCD diet? It was specifically developed for those with Crohn's. It is GF but it removes all grains and some other stuff too. I know some who were able to heal with doing this. Check out this site. Only registered and activated users can see links., Click Here To Register...

Is your home GF? If not, have you set up the kitchen to minimize possible cross contamination? Cross contamination issues are very real - invisible crumbs do count. What about non-food items? The article Stephanie mentioned is excellent.

Sorry your daughter is dealing with so many health issued. Certainly healing her gut is of prime importance. This was mentioned by many of the speakers in the Gluten Summit.

Anne

[mg12061]

Stephanie, I did look at the article very interesting. I do try to give her as much whole foods as possible. Probably the one thing I don't do unprocessed is chips and crackers, this is what she eats instead of bread. She never really ate bread. What I do buy I make sure it is certified gluten free.
Anne thanks for all the reminders. My kitchen is not totally gluten free Kathleen is the only GF out of the five of us. I do take many precautions though. Separate cooking tools like pans etc. I never put anything of hers on our counter top always on a clean plate. Wash my hands LOTS, I don't use a toaster for her I use her cookie sheet with clean foil every time.I wash her dishes and put them on a clean towel,dry my hands on a clean towel, Most of what I buy is certified gluten free or whole foods. I've checked her meds and toothpaste. Not her shampoo because what I've read is it doesn't go through the skin but I suppose it wouldn't hurt to check. She only gets food that I make nothing at school except whats in her lunch box. I will check deeper into some of her foods but some things I can't find a replacement that she will eat that's certified gluten free. But I do make sure it says gluten free. We don't eat out. I'm trying to be ven more aware of my preparation. I think the biggest problem is that she isn't able to express her feeling well. She ahs Down syndrome and had several strokes when she was five so her language isn't that of a typical child. So if she gets gluten she won't tell me exactly how she feels so I never know what exactly is bother ing out of all her medical issues. It's like being a detective! Thanks for all the help!
Mary Grace

[canoe]

Mary Grace, If you are buying crackers that are certified GF, please note what the serving size is, ie. 4 crackers, or 10 crackers, etc. If she is eating more than 1 serving, and if that serving contains 20 ppm, then 2 servings could equal 40 ppm, and this
might be where she is getting accidental gluten. Just a thought.

Marilyn

[mg12061]

Really?? I never thought about this. I thought that certified had to be tested 5ppm or less? She eats a lot of crackers and chips all as I said certified but I never thought about it in the sense of serving size! What a wake up call. Thank you! We've been to 2 nutritionists and I've read a LOT but this has never been mentioned. I think this is a huge deal. Thank you.
Mary Grace

[GFStephanie]

Mary Grace, If you are buying crackers that are certified GF, please note what the serving size is, ie. 4 crackers, or 10 crackers, etc. If she is eating more than 1 serving, and if that serving contains 20 ppm, then 2 servings could equal 40 ppm, and this
might be where she is getting accidental gluten. Just a thought.

Marilyn

This is incorrect. PPM is a concentration. The concentration doesn't change if you eat more of something, but the amount of gluten that you get does increase. Here is more explanation: Only registered and activated users can see links., Click Here To Register...

[mg12061]

Thank you Stephanie, That's a great link. It's got a lot of information I plan on reading as much as I can. I added it to my "favorites".
Mary Grace

[canoe]

Thanks Stephanie. Several years ago when I was eating some GF crackers, certified GF, and had a rise in my antibodies and could not figure out why, called the company.

Their response was per serving less than 20 ppm, if you are eating more, then you are getting more gluten. Stopped the crackers and the antibodies went down!

Link was helpful.

Marilyn

[mg12061]

Thanks for all the information. I found this page that was quite interesting about different companies and how they test and how many ppm they allow. At the bottom of the page is a table that breaks it all down. Some companies allow only 5ppm and have a dedicated factory. I think I'll check into their websites.

Only registered and activated users can see links., Click Here To Register...

Mary Grace

[GFStephanie]

I totally agree that eating more processed foods will give you more gluten if the food item if contaminated. It was just the detail of how it was explained that got to me. You see, I am a chemist and I have taught those concepts so I am a bit of a stickler. I am sorry that someone else explained it to you wrong, I hope she wasn't one of my ex students LOL.

[canoe]

Mary Grace,

Thanks for the link. I do hope that you will be able to get to the cause of your daughter's gluten exposures.

Marilyn

[canoe]

Stephanie,

Glad that you are stickler. Apparently it had been explained incorrectly to me.

I am glad that Mary Grace might find the information helpful and will help her maybe trace down why her daughter is continuing to get gluten.

Marilyn

[annelb]

Although doctors will tell you that the gluten is not absorbed by the skin, that is only for intact skin. What happens if there are breaks or microabrasions of the skin? There is also the question if some people react to something in wheat than alpha gliadin. Maybe there is a smaller molecule of something in wheat that can get absorbed

If you question a group of people with CD/GS it seems about 1/2 will say they react to gluten. I have had 2 reactions that happened after getting my hair washed at the hairdresser. When I went back to check, both times she had accidentally used the shampoo with wheat. Coincidence? Maybe, but I will stay away from skin products with wheat.

What about other non-food products? Play-Doh? Pet foods?

Sounds like you are taking great precautions with food prep.
Anne

[mg12061]

Anne, Thank you that's very interesting. That's exactly why I come here for advice. I think the advice I get from individuals who have the same health concerns is so real and so much more extensive due to their personal experience. I did look at some products and I think I'll be changing some of her products to Dove brand. Anyone have experience with this. I've read that their products like soap, shampoo and deodorant are GF. One product that I just wasn't sure of about GF was her Ranch dip that she LOVES with just about everything. So I made a similar dip from GF Greek yogurt and McCormick spices. She seems to like it so far. Much healthier too.
She isn't exposed to pet food r play-doh. I am washing my hands even more when preparing food, and after I prepare Gluten containing food before I go near her or touch anything of hers, they're already raw from the cold and washing...
Mary Grace