10 replies to this topic

[dilettantesteph]

Jane Anderson writes about a new Fasano study.  There is a link to the study in the article.  Some people with refractory celiac disease responded to a diet designed to limit trace gluten contamination.

 

http://celiacdisease...ac-symptoms.htm

 

It is nice to see super sensitive celiacs acknowledged by Fasano. 

 

Edited to add article link.  Sorry I forgot it.

[MJ_S]

Thanks for posting this. It took me a while to find the link, so here it is: http://celiacdisease...ac-symptoms.htm

 

This was the diet designed to limit trace contamination:

"For three to six months, the study subjects ate only fresh fruits and vegetables, fresh meats, poultry and fish, eggs, unflavored dairy products and rice. They were allowed to have oil, vinegar, honey and salt, and could drink 100% fruit and/or vegetable juice, Gatorade, milk or water."

 

The results are very positive indeed: 

"At the end of the study, 14 out of the 17 had responded to this diet, which the researchers dubbed the "Gluten Contamination Elimination Diet," and five of the six who had met the criteria for refractory celiac no longer did."

 

[dilettantesteph]

Whoops, thank you so much.  I must have forgotten to link it.  I'm editing the OP to make it easier for others to follow.  Sorry if that makes your post look weird.

 

Some of the things in the gluten contamination elimination diet I have found to contain some contamination and I need to carefully source them to not react.  I think that with further elimination/challenge dieting, some of the non responsive subjects might see elimination of symptoms too.

 

I just wish that someone would do analytical studies of which foods contain trace gluten contamination.

 

It is very encouraging for those of us who continue to experience symptoms on the gluten free diet.

[Celiac Mindwarp]

I have been doing a similar diet since January and haven't been glutened in that time. I am wondering where I was getting my cc previously. I am reintroducing foods now, so I guess I will find out eventually.

I agree it is great that Dr Fasano is looking at this area, he is such a great advocate

[dilettantesteph]

I was mad at him for his 20 ppm recommendation, but maybe I can forgive him now. LOL 

[Celiac Mindwarp]

We already have it in the UK I still can't make my mind up if it is better than nothing. I do think any gluten-free food should have to state that some people may react to small amounts of gluten, wwhether 20ppm or cc or shared lines. All we want is info. I have only needed reading glasses since scrutinizing labels! So many people seem to get caught out by gluten-free food with gluten in.

I am sticking to mostly naturally gluten-free for now

[GFreeMO]

Great article.  I am sticking to my naturally gluten free diet too.  If I go off of it and add something processed, I get sick.  I would love to be a celiac who could eat the gluten free labeled packaged foods but this just is not the case for me.  

I stick strictly with meat, fruit and vegetables.  I am making my own orange juice.  I am eating honey for my sweet snack.  I have been frying banana in a little Earth Balance and putting honey on top.  Pretty good!  I've been grinding rice in my blender and making my own "cream of rice" cereal for breakfast.  The only processed thing that I am keeping for now is Sierra Mist soda.  

 

What are you other super sensitives up to?  Any other tips or ideas or foods to try?  

 

I am still dealing with inflammation in my intestines and gas and bloating but the dh is starting to clear and I am having more energy. 

 

I do seem to have one really good day and then it's usually followed by searing gut pain and cramps.  Not sure why exactly.  The healing process I suppose.  

 

How are the rest of the super sensitives feeling these days?

 

- MO

[dilettantesteph]

I'm doing much better.  My son and I are both extremely sensitive.  We try to do mainly home grown because that eliminates a lot of the uncertainties involved with getting food from elsewhere.  I'm not saying that we react to everything.  It is just that when we react, we can't tell what it is from without spending months on elimination challenge diets sometimes. it seems like it would be easier to grow everything ourselves, but then again, it is hard to turn your suburban property into a farm.

 

At the beginning of this winter one of our formerly safe purchased elsewhere products became unsafe.  First we thought it was a stomach bug and by the time we knew that there was a contamination problem we were so symptomatic that it was really hard to figure out the culprit with elimination/challenge dieting.  It was even more challenging to find some food that we could purchase to replace it.  I didn't have enough safe stuff in my freezer.  

 

Finally we have found some things, and I am mainly symptom free and my son is finally improving.  I'm hoping to get him back in school soon.  What a long road this has been.  It gives me a lot of motivation to garden, process, freeze and dehydrate my butt off this season.

 

I enjoy sparkling water with homemade juice for my soda fix.

[GFreeMO]

I am going to start a big container garden this spring out on my deck so I can do the same.  

 

I am glad that you and your son are improving.  I have been on the long hard road myself.

 

What brand of sparkling water do you buy?

[dilettantesteph]

I am going to start a big container garden this spring out on my deck so I can do the same.  

 

I am glad that you and your son are improving.  I have been on the long hard road myself.

 

What brand of sparkling water do you buy?

 

Wegmans, it's a store brand and they aren't very widespread.

[Kamma]

Thanks for posting this, dilettantesteph.  It's a great confirmation that trace gluten is still causing symptoms and the 20 ppm simply does not go far enough for some celiacs.