Fasano Diet discussion

[disgruntledceliac]

Hi folks,

I went gluten free a couple years ago, but wasn't recovering, so I started the Fasano Diet after talking to my doctor. After three months of this diet my various symptoms (rashes, stomach problems, etc) have gone away. I'd like to learn more about the diet, but it seems about all I find is the same basic description of how it works and what foods are okay. Are there any threads that discuss people's experiences with the Fasano Diet? I have a bunch of questions to ask, but even on celiac.com I'm having trouble finding people on the same diet as me. Anybody want to talk about this?

One of the things I'm wondering about is re-introducing dairy. The Fasano Diet guidelines say you can do this after four weeks. I've been tentative about trying it again.

[RMJ]

My DGP antibodies decreased but remained stubbornly in the positive range until I tried the Fasano diet.  I know it comes up regularly in the forums but I don’t know if there is a specific thread on it. 

The reason for waiting 4 weeks is to allow the villi to heal, since the enzyme that digests lactose is from the tips of the villi.  After 3 months it is probably worth a try.  There are some adults without celiac who can’t handle dairy.

Ask away with your questions!

[GFinDC]

Some people get the ability to eat dairy back, others don't.  If you want to try it, just eat a small amount one day, and see if symptoms develop.  I can't eat dairy after almost a decade gluten-free, so it may or may not come back for you.

[cyclinglady]

I was on the “Fasano” diet last Fall.  I did NOT give up coffee and I did NOT consume Gatorade.  I think the diet’s emphasis is concentrating on whole, non-processed foods that reduce the risks of hidden sources of gluten contamination.  It is pretty simple.  Eat like your great-great grandparents.  If you did not grow it, gather it or hunt it, you did not eat.  

The diet seemed to work.  A repeat endoscopy revealed healed villi despite having very elevated DGP IgA antibodies.  It also revealed autoimmune gastritis.  It was the source of my lingering issues that I had been struggling with for the past year (in one month I was glutened (I think), had a tooth infection/extraction, the flu, a cold virus, and “off the charts” elevated celiac and thyroid antibodies.  I was a wreak.  Daily hives erupted every afternoon.  GI issues.  Allergies (IgE) became worse.  The symptom list went on.  

I am the gluten police.  I am so careful and have been gluten free for five years and my hubby has been gluten free for 17.  I know the diet.  So, my glutenings have usually occurred when someone else (restaurant) has prepared my food.  Another theory is that I might be too sensitive for even 20 ppm exposures.  Who knows?  Nobody.  There has not been enough research on the topic on super sensivity.  Even when the cut-off of 20 ppm was determined, it was not based on large studies.  

After my first year of being gluten free, I still was not well.  I ate the same gluten-free foods my hubby ate.  I discovered a few intolerances (e.g. garlic, Xanthan Gum).   Then I received my diabetes diagnosis.  I cut down on carbs.  So, I eliminated grains and legumes and finally felt normal.  I eat them now, sparingly in whole form in a delicate balance of keeping my celiac disease and diabetes in line.  

The avoidance of grains has helped me realize that there can be super sensitive celiacs.  We are all different.  We all have to figure out what works for us.  It is frustrating for sure.  

The Fasano diet has shown me that non-processed foods are the best way for ME to heal.  It also helped me realize that my hypersensitivity issues are all linked.  Exposure to gluten seems to trigger my immune system increasing not only antibodies associated with celiac disease, but all my antibodies.  

I read the advice of those members who have DH.  A number of them have trialed the Fasano diet and have met with success.  Can I see damage from gluten?  No, but they can.  Their rash is visible and insanely itchy.  Daily hives is NOTHING in comparison.  

Lactose?  Read this from UC Berkeley.  A huge of the world are genetically lactose intolerant.  You may or may not be one of them:

Open Original Shared Link

Experiment by starting with hard cheeses is my best advice.  At least if you react, the GI issues will last only a day or so.  

Since I know I have healed, I take more risks.  I just went on a cruise and I can safely tell you that with precautions and daily discussions with the chefs and head waiters, I did not get glutened.  But that took a lot of effort and sometimes I was eating just a Lara Bar or applesauce on port days.  I did not gain any weight!  ?  The Cruise included my entire family, so the goal was to be with family and not consuming tons of food.  (I will write more about my cruise in another thread.) 

I am back to cooking fresh food and eating at Dedicated gluten-free restaurants.  

If after three months of the Fasano diet and if you are not feeling well, it is time to get your GI to help you figure out what is going on.  It might not be due to celiac disease.  

Most of my message is directed at all members and not just to you, @disgruntledceliac.  I want to be able to help anyone struggling to get well.  

 

 

[apprehensiveengineer]

3 hours ago, cyclinglady said:

 Another theory is that I might be too sensitive for even 20 ppm exposures.  Who knows?  Nobody.  There has not been enough research on the topic on super sensivity.  Even when the cut-off of 20 ppm was determined, it was not based on large studies.  

 

 

 

This is a point that gets overlooked a lot. There is no study that exists that defines 20 ppm as "safe." It's not the gluten concentration that matters. There is nothing special about the number 20. The FDA chose 20 ppm to align with existing EU standards, and because it would strike the correct balance between pleasing companies (stricter standards cost them more) and keeping celiacs healthy.

What was studied was the amount of gluten in mg that it takes to make a celiac sick. Fasano et al found that >10 mg per day elicited significant damage in persons with celiac disease. That means that if you are consuming food at 20 ppm, you can eat 500 g of food safely, or 1 kg of food that is 10 ppm (many certification organizations use 10 ppm as a cap).

500 g of food is not very much. If you eat more than 1-2 meals/snacks involving gluten-free alternative products, you are probably eating more than 500 g. If you are eating a ton of gluten-free alternative products, it could easily result in >10 mg gluen/day, especially if some of those products are near 20 ppm.

[disgruntledceliac]

Thanks to you all for your replies. I really think more discussion of the Fasano Diet is in order.

I've been on the diet for 3 months and feel great. My DH has finally gone away, and I don't really notice any of the old symptoms. I've been extremely strict with the diet. The only exception is that I added a multivitamin after a couple months on the diet. (It is the MegaFood daily multivitamin ... it is advertised of being made from whole foods and is gluten/soy/dairy free.) I don't think the multivitamin has had any negative effects on me over the past month. (I've had the occasional odd/loose bowel movement, but I think that has more to do with other factors including my rice-heavy diet and the assorted veggies I eat a lot of.)

So I'm looking to try dairy again. Any suggestions here? cyclinglady suggested going with a hard cheese ... is this a better bet than starting with a glass of milk? If I go with milk, does it make any difference what I try? (I considered going for some of the lactose-free milk that contains lactase, but I don't know if that's any smarter than going with a regular batch of 2% milk.)

Anyhow, let's keep talking Fasano Diet.

[cyclinglady]

1 hour ago, disgruntledceliac said:

Thanks to you all for your replies. I really think more discussion of the Fasano Diet is in order.

I've been on the diet for 3 months and feel great. My DH has finally gone away, and I don't really notice any of the old symptoms. I've been extremely strict with the diet. The only exception is that I added a multivitamin after a couple months on the diet. (It is the MegaFood daily multivitamin ... it is advertised of being made from whole foods and is gluten/soy/dairy free.) I don't think the multivitamin has had any negative effects on me over the past month. (I've had the occasional odd/loose bowel movement, but I think that has more to do with other factors including my rice-heavy diet and the assorted veggies I eat a lot of.)

So I'm looking to try dairy again. Any suggestions here? cyclinglady suggested going with a hard cheese ... is this a better bet than starting with a glass of milk? If I go with milk, does it make any difference what I try? (I considered going for some of the lactose-free milk that contains lactase, but I don't know if that's any smarter than going with a regular batch of 2% milk.)

Anyhow, let's keep talking Fasano Diet.

If you want to know if you are lactose intolerant, then test with milk.  But what if you are “slightly” lactose intolerant?  Then you would be giving up cheese or butter when you would not have to. I need dairy in my diet.  I am not just gluten free, but am a diabetic.  Grains are not diabetic friendly, but full fat dairy is.  

I would (did)  test with a hard cheese which has the least amount of lactose.  Bacteria has already devoured most of the lactose (milk sugar) for you.  If successful, work towards butter, yogurt, cream, sour cream, cottage cheese and then finally milk.  You can google the lactose content.  

I am also a full fat fan.  Again, diabetic friendly and my research is indicating that we were fed a bunch of bull about fat back in the 80’s which has probably contributed to the obesity and diabetes issues we face today.  But you can read up on that issue when you have time.  

Be careful with the quantity of rice in your diet long term.  There is an arsenic issue that impacts celiacs who favor rice as an alternate.  This is not bogus.  Read Consumer Reports and the Gluten Free Watchdog.  Find rice sources like California which has lower arsenic.  Avoid southern grown rice.     You are okay now as the Fasano diet is meant to be temporary.  

[disgruntledceliac]

I think I might have reacted to something that I've re-introduced to my diet. I have a small bumpy patch forming on one of my temples, which is where I get DH. It has developed in the past week, which coincides with the re-introduction of dairy as part of my diet. It also coincides with the return of potatoes to my diet (I was eating mostly rice and sweet potatoes beforehand).

I don't really have stomach issues -- just what I suspect is DH developing. What do I do now, according to the Fasano Diet? Do I drop dairy and see if the DH goes away? Drop dairy and potatoes?

[cyclinglady]

Maybe there is a fine balance with iodine in your diet.  You  definitely need in your diet and you can not live without it.  What dairy were you consuming?  Iodine levels can vary with dairy products. 

Open Original Shared Link

Have you read all the DH threads?  My advice might not be as applicable since I do not have DH.  Better to get advice from some one who has it.  

Open Original Shared Link

Open Original Shared Link

Also, from what I have read (and not experienced), DH can flare for no apparent reason.  It can takes months or years for the antibodies to leave the skin.  So you might be doing everything right.  

Consider reading Jane Anderson’s articles.  She had DH and offers good advice.  

Open Original Shared Link