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| Chicken Wing Stew using fresh rosemary The Gluten Contamination Elimination Diet only uses fresh herbs and no spices |
Have you been on a standard gluten-free diet for a couple of years now, but you are still bloated, exhausted, enduring those stomach gurgles, and running for the bathroom several times a day?
Are you in just as much pain as you were in on the day that you were diagnosed with celiac disease or non-celiac gluten intolerance?
Did your doctor or a specialist tell you that all of the brain fog and depression would miraculously go away and you would feel much better shortly after going gluten free?
Maybe it feels like your health is continuing to decline instead of improve. If you have dermatitis herpetiformis, you might still be plagued with an itchy, ugly rash.
Perhaps you continue to have trouble sleeping through the night, or you are still fighting off several angry mouth sores you thought would be gone by now.
If so, you are not alone.
There is a huge group of celiacs and those with non-celiac gluten sensitivity that appear to be non-responsive to a standard gluten-free diet.
If so, you are not alone.
There is a huge group of celiacs and those with non-celiac gluten sensitivity that appear to be non-responsive to a standard gluten-free diet.
If that sounds like you, don't run off until you've taken a serious look at the Gluten Contamination Elimination Diet created by Dr. Fasano that I'll be explaining in this post.
This is a very restrictive diet, but eliminates all sources of potential gluten contamination, so you can start feeling better right away!
Have You Seriously Addressed Cross-Contamination?
Before we take a serious look at the Gluten Contamination Elimination Diet created by Dr. Fasano, it's a good idea to take a closer look at the cross contamination in your life.
If you have seriously addressed the issues of cross-contamination already by:
- only buying a small handful of gluten-free certified products
- not going out to eat any more
- only eating meals that you have fixed yourself
That's a great start.
Eliminating all major sources of cross contamination in your life is essential to the healing process.
Unfortunately, getting help for going further than standard good practices for avoiding cross-contamination issues is extremely difficult to find. Most bloggers who are super sensitive to gluten do not speak about it very much.
Maybe you already know that.
If you've tried speaking up in forums or on blogs and always get the same advice:
- Stop living in fear. You can eat out if you take the right precautions.
- You need to give your gut more time to heal. Don't rush it.
- Maybe you have additional food sensitivities like soy or dairy.
- Take a probiotic and have your thyroid and gall bladder checked.
- Are you reading all of the ingredients on the label?
- Feeling like crap is just how it is. Deal with it!
Even bloggers who admit that gluten-free products can make you feel sick will still continue to dish out some of the advice above.
I've heard all of these responses myself, and many more. That is one of the reasons why it took me so long to wake up to the reality about gluten-free diets.
Most people mean well, but honestly, they don't understand super sensitivity, and they know even less about trace levels of gluten contamination.
The Truth About Not Responding to a Gluten-Free Diet
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| For the most sensitive among us, eating out at restaurants can be quite dangerous! |
According to the FDA, in their Health Hazard Assessment for Gluten Exposure, the most sensitive celiacs among us can manifest symptoms with a gluten intake as tiny as .015 mg per day.
Damage to the villi for these same sensitive individuals begins at .4 mg, the amount of gluten you'd find in less than a 1-ounce serving of gluten-free food if it contained 20 ppm of gluten.
At that level of sensitivity, most gluten-free products are off limits and eating out, even occasionally, can be quite dangerous.
Luckily, the amount of individuals who react to traces of gluten as low as .015 mg is rare, but that doesn't mean that you should ignore your symptoms if you are not responding to a gluten-free diet.
Until you remove as much gluten as possible from your everyday life, there is no way to know where you fall on the celiac spectrum.
The truth is this:
If you have been on a gluten-free diet for over a year and you are still feeling ill, still in pain, and/or still having symptoms, then you are probably being glutened from either your food or your environment.
What's the Next Step?
So far on this blog, we've talked about:
the definition of a super-sensitive celiac,
how to determine if you fall into that group,
and the amount of gluten found in a single breadcrumb.
Today, we're going to talk about the Gluten Contamination Elimination Diet created by Dr. Fasano and his co-workers.
According to the scientific study the diet was originally used for, the most common causes of non-response to a gluten-free diet is either:
1) deliberate noncompliance; or
2) accidental ingestion of trace amounts of gluten.
Granted, some patients might have:
- inflammatory bowel conditions
- microscopic colitis
- refractory celiac disease
If you still have symptoms, if you still feel like crap, if you've sought medical advice and testing for other conditions and those tests came back negative, then the next step is to go on the Gluten Contamination Elimination Diet developed by Dr. Fasano to eliminate the most common sources of gluten contamination.
What Can You Eat On the Gluten Contamination Elimination Diet?
The idea behind the diet is to eliminate all potential exposures to gluten in processed foods, including those labeled gluten free, for several months to see if your symptoms clear up.
If they do, then after 6 months, you can try adding back foods that are not on the following list, including a few gluten-free products.
It is best to return foods one at a time, so you can carefully watch how you react.
Several study participants had reactions to the reintroduction of processed foods, so they elected to stay on this whole foods diet indefinitely.
Out of the 82% of participants in the study who responded well to this elimination diet, 80% were able to return to a gluten-free diet without symptoms returning.
Five of the 6 participants thought to have reactive celiac disease did not have that, as they were among the 82% that reacted positively to the diet.
At follow-ups, which ranged from 7 to 62 months, those patients were still on a standard gluten-free diet, so even though the following diet is quite restrictive, the purpose of the diet is to help heal the digestive tract.
Only a few individuals have to eat this way for the rest of their lives. Most can return to eating additional foods.
What you do after you're healed, is up to you.
Just keep in mind that a gluten-free diet does not heal celiac disease. There is no cure.
At this point, a gluten-free diet is still for life.
How much gluten contamination you can personally tolerate without self-destruction will depend on your situation and daily habits.
Dairy Products
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| Dairy products are highly inflammatory, and not always gluten free |
Dairy products are not allowed for the first 4 weeks.
Dairy is digested by enzymes that are produced by the tips of the villi, so if you try to reintroduce dairy and notice your symptoms coming back, you'll have to stay away from it for a longer period.
Standard advice given to brand-new celiacs by celiac experts when I diagnosed myself in 2008 was to avoid dairy for a full 6 months, until the villi had a chance to heal.
So, I found the minor 4-week restriction quite odd, especially, since the dairy industry itself has said that their dairy products are not guaranteed to be gluten free.
If you are suffering from temporary lactose intolerance, 4 weeks might not be long enough. Your villi do not heal from the tips down. They heal from the bottom up.
I had to give up dairy for a full 3 years before I was able to return low-lactose forms of dairy to my diet, such as hard cheeses, pure sour cream, and low-fat cottage cheese.
I still cannot drink milk or use it in cooking. However, I finally picked up a carton of lactose-free milk and have started to use that in cooking, and have been fine.
When you do reintroduce dairy, be very careful.
Stay away from flavored or seasoned products, as well as processed cheeses. Stick to:
- plain yogurt
- aged cheese (like cheddar or swiss)
- plain milk
- real butter
for the duration of the diet. Once your villi have healed, you can try a few other gluten-free products, but you need to watch yourself very carefully.
Lactose intolerance is one of the major clues that you are being glutened with very low gluten residues, since the tips of the villi get destroyed first.
Meats and Protein Foods
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| Only fresh meats are allowed on this diet. You cannot use anything that has been injected or processed in any way. |
Meat, poultry, and fish must be completely fresh, and not processed. Therefore, you must avoid:
- luncheon meats
- ham
- bacon
- sausage
- pepperoni
- salami
- hot dogs
- prepared meat balls
Also, any other meat product that has been processed, including those marked gluten free on the label.
Eggs, dried beans you cook yourself, and nuts that are still inside the shell are other protein sources you can use.
Produce
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| All product must be completely fresh and not processed. No canned or frozen or dried produce is allowed! No dried herbs or spices. |
Only fresh fruits, vegetables, and herbs are allowed.
Don't use anything canned, frozen, or dried, including herbs and spices. Spices are almost always contaminated with gluten.
On a standard gluten-free diet, that contamination is considered minor due to the amount of herbs and spices you would use in a recipe. But on this diet, the aim is to get rid of all potential sources of contamination, so all sources of gluten are initially avoided until after you heal.
Gluten-Free Grains
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| Gluten-free grains are not safe for many super-sensitives, so all grains except for rice are not allowed. |
Brown and white rice are the only grains you can have on the Gluten Contamination Elimination Diet.
Rice is not grown anywhere near wheat, barley, and rye because gluten and non-gluten grains won't grow in the swampy conditions needed to grow and harvest rice.
The popular gluten-free grains and seeds, such as:
- millet
- sorghum
- flaxseeds and flaxmeal
- psyllium husks
- buckwheat
are not allowed until after the 6-month period has ended and/or you have healed.
Due to the practice of rotating grain crops with wheat and barley, most gluten-free grains have some degree of cross-contamination with gluten either in the field, during harvesting (with shared equipment and storage bins), transport to the factory, or even at the facility if the manufacturer processes gluten grains or ingredients as well as gluten-free ones.
Keep in mind that if your digestive tract is swollen and irritated, you might have problems with brown rice as well. Reacting to brown rice or other high-fiber foods doesn't mean you are being glutened.
I cannot eat brown rice or seeds, such as flaxmeal, at this time. The only grain I can eat is white rice.
My digestion is getting better than it was, due to taking a L-glutamine supplement, but it is still not ready for a lot of heavy grains.
Condiments and Miscellaneous Foods
Very few products fall into this category, but the creators of the diet did allow:
- pure oils
- vinegar (no malt vinegar or anything flavored)
- pure honey
- salt
Be careful with this list though.
Many super-sensitive celiacs react to distilled vinegars, depending on the starter, including standard white vinegar.
Personally, the only vinegar I do not react to is rice vinegar. For me, distilled white vinegar is the worst.
Oils also can be problematic, since fat malabsorption is common in those newly diagnosed with celiac disease.
Although, this diet was created for those who have been on a gluten-free diet for over a year, if you're still having symptoms, especially gastrointestinal symptoms, then you might not be absorbing fats properly.
In that case, a lower fat diet will be necessary until the inflammation calms down.
Beverages
The diet allows very few processed foods and beverages. I'm not sure what the reasoning here is behind allowing one brand of sports drink, since it's a processed beverage, but here's the list:
- 100% fruit juices
- 100% vegetable juices
- Gatorade
- milk (once dairy is returned)
- water
- gluten-free supplemental formulas like Boost and Ensure
The fruit and vegetable juices are for those who have a juicer and know how to make their own juices from scratch. Since canned and frozen produce are not allowed, other than Gatorade, plain milk, and supplemental formulas, you will have to make your own juice.
Dietary Supplements and Medicines
Medicines prescribed by a doctor must be continued, of course.
Another exception to the "no processed foods" rule is vitamin and mineral supplementation. It's highly recommended. Make sure that you choose a brand that is gluten free. Not all vitamin-mineral preparations are.
Final Precautions and Thoughts
Keep in mind that this is what's called an elimination diet. With an elimination diet, you eliminate foods that are bothersome and then reintroduce them later on.
Avoiding the offender for several weeks or months will cause the body to overreact when the offensive food is reintroduced if you are severely sensitive to it. Be very, very careful when returning to a standard gluten-free diet.
It's interesting that 80% of the participants in the Fasano study were able to return to a standard gluten-free diet, and that the rest decided to stick with the diet above.
It is not clear if those people who decided to stay with the elimination diet for life tried to go back to a standard gluten-free diet all at once and their body couldn't handle the gluten load, or if they are truly sensitive to very low levels of gluten residue or particular foods they tried to add.
Always be careful introducing new foods to your core diet, as it's quite common to have a violent reaction to foods your body doesn't want you to eat.
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