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Jane Anderson

Study: Trace Gluten Responsible for Ongoing Celiac Symptoms

By March 4, 2013

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Researchers finally are waking up to what some of us in the gluten-free community have been saying all along: gluten cross-contamination in trace amounts -- well below the 20 parts per million threshold thought to be safe -- is responsible for continuing symptoms in plenty of people with celiac disease.

In a study published online last week in the journal BMC Gastroenterology, researchers from the Center for Celiac Research (formerly part of the University of Maryland, now part of Massachusetts General Hospital) described using a diet comprised of whole foods and practically no grains to help people who didn't improve on a "standard" gluten-free diet (i.e., one containing processed "gluten-free" foods and a hearty sampling of baked goods made with gluten-free grains).

The researchers included 17 diagnosed celiacs who had failed to control their symptoms or heal, even though they followed the gluten-free diet religiously (as verified through an interview with a dietitian). Half continued to experience diarrhea, and about one-third complained of fatigue and/or abdominal pain.

About half had high-positive celiac blood tests, three had weak positive test results, and four had negative test results (although three of those with negative blood tests showed continuing villous atrophy upon endoscopy).

Six of the people included (including the three with negative blood tests but ongoing intestinal damage) met the criteria for refractory celiac disease at the start of the study. Nonetheless, the researchers hypothesized that they didn't have refractory celiac disease at all; instead, the trace gluten commonly found in processed foods (especially grain-based products) was preventing them from healing and feeling better.

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.

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.

Of particular interest (and the only part of this study that didn't ring completely true to me): 11 of the 14 people whose symptoms and test results improved on this elimination diet were able to return to a more conventional gluten-free diet without a resurgence of symptoms, the authors wrote. I have to say: that hasn't been my experience, nor has it been the experience of people I know who are sensitive enough to trace gluten to warrant being on this restrictive a diet.

Center for Celiac Research director Dr. Alessio Fasano told me in an interview that the elimination diet seemed to give the immune system time to calm down, and that people were able to add back processed gluten-free products after a few months on the more restrictive diet. Two people in the study decided to stay on the elimination diet indefinitely because their symptoms returned and their lab results deteriorated when they added in more foods.

Of the 1,288 people with celiac disease seen at the center between 2005 and 2011, a total of 29 -- or 2.3% -- were instructed on how to follow the elimination diet because they had failed to improve on the standard gluten-free diet, the study said. The researchers did not include anyone with non-celiac gluten sensitivity in the study.

What are the take-home messages from this study? First, it's great to see acknowledgement that not everyone thrives on a "standard" gluten-free diet, which is something many of us have known for years (and a major reason people haunt various celiac forums, looking for any and all information on why they're not getting better).

Second, it is possible to eat a completely whole-foods diet and stop your symptoms ... but it takes lots of work. At least one person who started the diet stopped it prematurely because it was so restrictive -- that person decided just to live with the continual symptoms and elevated blood test results instead.

As I said above, it definitely hasn't been my experience that people who are quite sensitive to trace gluten (like me) can go back on a more "standard" gluten-free diet following a whole-foods diet.

However, I will say that my symptoms have improved significantly since I began following my own version of this elimination diet. For example, it's now possible for me to indulge occasionally in carefully chosen "gluten-free" grain products or processed foods and not suffer terrible symptoms (I definitely notice I've gotten some gluten, but I'm able to handle the relatively minor symptoms I get from these indulgences). I don't do this often, since to me, the brain fog, slight digestive ills, and sleep disturbances I get are not worth the piece of cake or pizza.

More on trace gluten:

This is a great topic, and I hope to see more research on it ... especially research that includes people with non-celiac gluten sensitivity who have failed to resolve their symptoms on the gluten-free diet.

Keep up with the latest in the celiac disease/gluten sensitivity world -- sign up for my newsletter, connect with me on Facebook or follow me on Twitter - @AboutCeliac.

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Comments
March 4, 2013 at 7:25 pm
(1) Lori says:

This is so true. My daughter and I continue to suffer daily even though we are on a strick gf diet. After about 10 days we go on a “cleanse” —only raw fruits and veges and after two days the symptoms subside. We gradually add back the foods that are suppose to be OK until we can’t stand it any longer and then it’s back on the cleanse. My daughter is scheduled for a follow up endoscopy in three weeks. We have been dealing with this for six years now and unfortunately it’s still a vicious cycle.

March 4, 2013 at 7:47 pm
(2) celiacdisease says:

Lori, I suspect there are many people in your shoes — far more than the 2.3% the study found. My “everyday” diet actually is stricter than the elimination diet detailed in the study (I’ve eliminated some things they allowed). Why do I stick to it? Because I feel truly awful if I don’t. You’re absolutely right — symptoms sneak up on you.

I also don’t want to risk major health issues well down the road. I’m not actually talking about lymphoma (while it’s really scary, the true risk of it is fairly low). I’m more worried about neurological damage from trace gluten consumption — my guess is, there’s a lot more neuro damage being done than anyone now realizes.

Jane

March 4, 2013 at 8:15 pm
(3) Pan says:

Wonderful news, Jane. Really validates the ‘sensitives’. I wonder if Fassano will add an addendum to his recent validation of the FDA’s rules that gluten free is okay to – 20 ppm.

I agree with your statement that the neurological effects are probably far more reaching than what is currently suspected. I’d like to see more research conducted in this area.

Thank you for your continued objective reporting. You’re a godsend.

March 4, 2013 at 8:33 pm
(4) Stephanie says:

We have been trying to tell people about this at Glutenzap.com for years. I have contacted researchers to ask them to do a study like this one. I am so glad that one of them has finally done it. All those of us who are continuing to suffer while thinking that we aren’t eating any gluten deserve to have this information.

March 5, 2013 at 12:12 am
(5) Jens Kristjansson says:

There is no grain at all in my diet and no dairy, nothing processed, only fresh fruit, vegetables, meat and fish and lots of beans. I am 50 and I feel 20 and I have enough energy for two.

But if I stray and eat, say, 5 cookies that are labeled gluten and dairy free, I will feel symptoms (extreme fatigue, brain fog, etc) within the next two hours and it will take me up to one week to get rid of them.

It’s really not worth it.

March 5, 2013 at 6:32 am
(6) terri a. says:

i have not been ‘formally’ diagnosed but since 2009 have learned of my gastroenterological issues thru some ‘formal’ assistance. i have placed myself on a ‘whole foods’ diet more out of necessity/common sense-self survival nstinct rather than following sum ‘standardized technically gluten-free diet’.

i am also severely fructose malabsorbent; so to my knowledge i have also eliminated fructose from my diet sufficiently to the point of not suffering the once seemingly accumulative life threatening effects, kidney nflamation, hypertension, swelling headaches, night sweats, sugar crashes & hypoglycemic systemic shut downs along with the typical gastro issues.

science is suppose to minimize premature & harmful pre-clusions. so, if we dn’t apply the science authentically & consider all significant observations n the scientific discussions, then what r we doing?
terri a.

March 5, 2013 at 7:21 am
(7) terri a. says:

i suspect i have celiac disease. i am also pretty sensitive to fructose. hence, i eat a very restrictive diet. i do not ingest any process or simple sugars other than organic thai white jasmin rice. i can only stomach small red kidney beans without symptoms no other beans or lentils at this time.

unprocessed small red kidney beans, organic thai white jasmin rice, the xtra sharp cheddar chesse fully melted, plain frozen chicken tenders but with some salted broth added n that process, & a table spoon of xtra virgin olive oil & water is what i ngest 4 times withn a 24 hr period. i try to monitor my electrolyte symptoms to make sure my electrolytes r not b-low the minimums.

i can eat whole meats but dn’t care for pork (xcept for the addictive drug like bacon, lol but i abstain), grounded anything, beef, & toxins n my seafood.

science is suppose to minimize premature pre-culsions & thus harmful application to the public. if science chooses to ignore the data, whether formal or nfomal due to convenience & capitalistic considerations to ndustries’ profit margins, than what’s the point of science research?

we have to take back control of our minds & bodies. we have to use & trust what we learn from paying attention to our bodies & to others who suffer likewise along with comprehensive scientific studies; n order to make decisions which may b applied for our benefit & not our on going systematic demise.

terri a.

March 5, 2013 at 8:56 am
(8) Stephanie says:

Now what we need is more study of gluten contamination in our foods with more sensitive tests than the 5 ppm available now. I believe, based on home tests that we have done, that it is contamination of some of the allowed foods in the study diet that prevented some of the participants from recovering.

Any researchers out there ready to do 1 ppm or lower testing of our food?

March 5, 2013 at 11:11 am
(9) Shelly Asplin says:

Jane,

Appreciate your work so much. You do a great job! Shelly Asplin, CSA/USA Dietitian

March 5, 2013 at 12:07 pm
(10) celiacdisease says:

Thank you, Shelly!

Jane

March 6, 2013 at 1:10 am
(11) yomahmah2003 says:

I DON’T THINK I’VE SEEN ANYONE SAY THIS. BUT OF COURSE, I’M SICK A LOT , SO I MISS ALOT. – I HAVE GOTTEN ILL AND HAD SORES IN AND AROUND MY MOUTH AFTER GOING TO THE DENTIST. -( POWDERED GLOVES?) ALSO, I GET NAUSEOUS AND DIZZY WITH OTHER NEUROLOGICAL SYMPTOMS AFTER TAKING SOME FORMS OF MEDICATIONS, BUT NOT OTHERS. ( THE BIG GENERIC RX 800 MG. IBUPROFENS, BUT NOT THE COATED ADVIL) I BELIEVE SOME OF THE BIGGER GENERIC VERSIONS HAVE SOME TYPE OF GLUTENOUS STARCH AS A BINDER? THE SKIN ON MY FEET , ELBOWS AND LEGS IS SO HORRIBLY DRY AND PEELING. I USE TONS OF LOTIONS AND NEVER BATHE IN HOT. I BELIEVE A LOT OF THE TRACE GLUTEN IN THINGS CAUSES THIS, AND GLUTEN IN THE LOTIONS ETC. WHAT DOES ANYONE ELSE THINK.???

April 1, 2013 at 5:54 pm
(12) Dani says:

Thank you, Jane, for covering these issues! You’re the best news source I’ve found for celiac issues.

Also, thank you to Stephanie and the glutenzap folks!

You have all opened my eyes to sources of trace contamination, and given me much needed motivation to keep trying. It does get disheartening when you think you must be doing everything correctly, keep narrowing down the diet, and still have reactions. Bah! I hope news of this study travels far and wide.

As for the study, I wonder if they were certain that the vinegar and juices were not adding gluten contamination? I’m especially suspicious of vinegar — a lot of celiacs seem able to handle it, but I suspect that supposedly safe distilled products (like vinegar and alcohol) have been the source of much of my grief.

April 13, 2013 at 5:20 pm
(13) Colleen says:

Where can I find a copy of the diet?

May 8, 2013 at 6:30 pm
(14) shaunamom says:

Jane,
Thank you so much for putting this up! To have doctors finally explore this means SO much for some of us, I can’t even express how nice it is to have this information finally confirmed.

Colleen,
The diet they followed was this:
“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.”

However, speaking from experience:
- Some people who have extra sensitivity don’t tolerate rice or any other grain.
- Some celiacs are lactose intolerant due to damage from the disease and may not be able to tolerate the dairy.
- Some can’t tolerate vinegar, or can only tolerate carefully sourced apple cider vinegar, or only homemade vinegar without added yeast.
- Sometimes salt is an issue if it’s processed in a facility where they are processing spice mixtures that contain gluten, so a company that solely produces salt is best.
- Same thing with oil; make sure it’s made in a GF facility. I’ve reacted to an oil that turned out to have a shared equipment line with wheat germ oil. :-/
- Honey works for some of us and doesn’t for others. Not sure why. You can grow your own stevia, though. Or juice fruits and boil the juice down to make a concentrate.
- Gatorade? Yeah, not so great for many of us. And the juice sometimes only works if you juice it yourself.

However, some of us can purchase and tolerate dried legumes and/or unshelled nuts if they are carefully sourced (not processed in a facility with wheat) and washed carefully before shelling/cooking/eating.

If you are looking for recipes, raw foodists and those on a paleo or GAPS diet often have recipes that would be compliant with this type of diet.

May 8, 2013 at 7:15 pm
(15) celiacdisease says:

Great information, Shauna — thank you!

May 10, 2013 at 10:38 am
(16) Theresa says:

This is awesome! What about coconut milk? is it too processed? I’d love to have some meal plan ideas – breakfast is my toughest one! What about plain gelatin like on the SCD diet?

I am so happy that I found this information! I have hope of healing!!! 10 yrs eating gluten free – not much relief! This is wonderful news!!!

June 1, 2013 at 11:23 am
(17) Pan says:

Jane,
How long did Fassano follow the 11 people who returned to the traditional ‘gluten free’ diet to support his claim that they could now eat ‘gluten free’ without reacting? I’m curious about this since if the follow up was not long enough it might not catch those who ‘healed’ initially but slowly worsened eating ‘gluten free’ products over time after the study’s parameters.

January 14, 2014 at 1:35 am
(18) Christina says:

This is all so true!

My son and I are gluten intolerant, still traces were easy to ‘trace’ because of the symptoms… We have been not only gluten but preservative free and processed food free for about a year and a half and we have realized that life can be so beautiful, headache- free and pain-free!! It’s not worth eating silly things! We just buy gf flour and spagetti (specific brands we have come to trust) and the rest is made at home! Yes, we eat biscuits and cake, but the ones I make with ingredients I trust! Result? We wouldn’t go back!!!

February 21, 2014 at 1:15 am
(19) Brion Antinoro says:

In the diet, what qualifies as unflavored dairy products. I have a newly diagnosed 11 year old son who is a rather picky eater to start with. Only meat he will eat is chicken, only vegetable is carrots, will eat some fruits, and doesn’t really even care for eggs. Need to find several things he’s willing to eat.

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