• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
dilettantesteph

Trace Gluten Responsible For Ongoing Symptoms - Study

Rate this topic

Recommended Posts

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.about.com/b/2013/03/04/study-trace-gluten-responsible-for-ongoing-celiac-symptoms.htm

 

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

 

Edited to add article link.  Sorry I forgot it.

  • Upvote 1

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Thanks for posting this. It took me a while to find the link, so here it is: http://celiacdisease.about.com/b/2013/03/04/study-trace-gluten-responsible-for-ongoing-celiac-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."

 

;)

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites
Ads by Google:


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 :)

Share this post


Link to post
Share on other sites

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

  • Upvote 1

Share this post


Link to post
Share on other sites

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.

  • Upvote 1

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites


Ads by Google:


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.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,937
    • Total Posts
      943,597
  • Member Statistics

    • Total Members
      67,262
    • Most Online
      3,093

    Newest Member
    JadeYun
    Joined
  • Popular Now

  • Topics

  • Posts

    • Perhaps automated word pull as JMG suggested. It is irrelevant, but I must comment :  Oddly was entertaining for me today (on a rough day) to read this drivel that included celiac bashing . The celiac dis didn't even hurt, for it was from someone who could not formulate a coherent rational  thought  and shared that publicly. At first I wondered what substance the author was on, then I read further to discover more of this odd piece. The author is all over the place. The piece is also laced with a poorly excuted, back handed attempt to express judgement , anger, and veiled hate in a masked arrogant self subscribed Christian label.  Sure the author  makes a point of shaming the offenders who dropped off the offensive clothes. If the author were perhaps more coherent and a better writer the piece could be borderline offensive or effectively shameful. Alas it is neither.  I however felt sorry  not for the donation facility , the homeless , or the readers, but felt sorry for the author . The author clearly has a lot of self hate, anger, low self esteem, poorly hidden beneath a false facade of uppityness, narcissism, arrogance, while identifying /self labeling as a Christian.  I very rarely get to read a piece where I can play/exercise my brain as lay person couch psychologist . This piece lends itself to that perfectly. I went to the link and read the comments below the article from the real people who express how best to give to those in need, where, and how appropriately. So all was not lost. The right people commented kindly, respectfully, logically, in a helpful guiding way and without hate or shame. So regardless of how admin got this article here - most of us should skip this for the rest of us  bored enough or seeking an odd entertainment piece that does not relate to celiac , let's hope the author gets the help they need as a disgusting gluten-free sandwich has more to offer to society. 😉 Lol  
    • Hi Gemma, Welcome to the very select, exclusive, super secret club of NCGS (or I if you like), where you get all the fun of living the gluten free diet with the added scepticism of half the medical establishment and most of the general public   If you're interested in learning more, there's some good resources collected here:  Feel free to add or just post there if you like.  It's great that the diet is working for you. The emotional side is difficult no doubt. It does get easier, trust me, for you and those around you also. You get better at planning, at coping, at working around it etc. The availability of safe foods and wider knowledge continues to improve year on year.  I've barely been back to Germany, one of my favourite countries, since going gluten-free but take some comfort in the fact that its always harder in a different country with a language barrier as well, but even so there's hope: https://foursquare.com/top-places/berlin/best-places-glutenfree-food https://www.tripadvisor.co.uk/Restaurants-g187323-zfz10992-Berlin.html You maybe need to accept there's a level of preplanning needed now that wasn't there before and if you do that you can still be spontaneous in other ways? Expect some setbacks, at times its ok to cry. Or, er happen to get something in your eye if you're a strapping bloke who should know better  Keep a good supply of nice safe snacks and treats at close hand. In your car/bag/pocket. Eat well before you go out. Have your freezer well stocked with nice safe food and your fridge too. Get to know what easy safe options are available, Are you in the UK? Join Coeliac.org and they'll send you the brilliant guide which will unlock so many safe, cheap foods, also available as an app. And post here, lots of good people with advice and support. Best of luck, Matt  
    • Hi All,  Recently (Nov 2017) I was diagnosed with NCGI by my consultant at hospital, this diagnosis has been after years of testing, colonoscopies, endoscopies and a 2 stone weight loss - it took the weight loss for me to finally be taken seriously by dr's. (I was tested for celiac around a year ago, all clear). I'm looking for advice to help me cope with this diagnosis, albeit I am thrilled that I potentially do not have anything life threatening (still undergoing tests, hosp visits etc.) but on the whole, I'm feeling hopeful that gluten may be the root cause to all my ailments and symptoms.  From diagnosis, I have cut out gluten completely, and apart from the odd slip up or cross contamination incident I have noticed a drastic improvement in my life quality and my time spent inside my bathroom walls has dramatically reduced. (TMI?)  The problem I am currently having is that I feel completely isolated from everyone in my life, I feel that me having to follow this strict diet is putting a burden on loved ones, especially when it comes to travel & eating out. (Was over in Berlin over the weekend, spent a good 5 hours over the weekend crying at being a burden to my BF restricting where we can eat, and also the fact that the majority of places we tried to dine, bar one or two, did not cater to the diet).  I thought I was coping with the diagnosis well, however the crying spell and fed up feeling with it proved I'm not. Does anyone have any good tips they followed and can recommend when they were newly diagnosed?    Xxx
    • Sorghum flour gives me massive cramps and diarrhea within 5 hours. I avoid it like the plague now.  FYI: Krusteaz gluten-free cornbread also has it as an ingredient, just found out the hard way.
    • Welcome!   Did you get skin biopsies?  Some celiacs are seronegative.  They might not even have intestinal damage.  Instead most of  the antibodies (and damage)  are in the skin.  I do not have DH, but suggest you scroll though the DK section and get tips.  Specifically on how to coach a derm properly on how to biopsy for DH (or find a celiac-savvy derm).   It is NOT the same for other rashes from what I have read.  I do not think a person with a gluten sensitivity can have DH because DH is celiac disease.  It just presents differently.   https://www.allergicliving.com/2017/07/11/celiac-thats-skin-deep-the-mysterious-rash-sparked-by-gluten/ https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/ I hope you find relief!  
  • Upcoming Events