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PaigeyPants

Has anyone tried the Fasano diet?

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I have been 'gluten free' for over 15 years, but still have not felt well. I've been tested for everything under the sun and have recently  concluded that I am probably just reacting to hidden gluten in something in my diet. I have cleaned my kitchen, given away anything questionable and still feel like I am being glutened by something! In the past I had always thought that things that didn't have gluten ingredients or a disclaimer were probably fine, and that things labelled 'gluten free' would be definitely safe, but now I am questioning everything! Getting really frustrated with trying to figure out what it is, as I seem to have a more delayed reaction than most, so makes it difficult to pinpoint even which meal has made me sick. 

In an attempt to figure this out, I thought I would try the Fasano Gluten Contamination Elimination diet and see if I start feeling better, and then slowly try to reintroduce foods one at a time to determine whether I react or not. Has anyone tried this? It's a very restrictive diet, if anyone has any tips that would be helpful, I'm on day 2 and don't want to get discouraged!

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3 hours ago, PaigeyPants said:

I have been 'gluten free' for over 15 years, but still have not felt well. I've been tested for everything under the sun and have recently  concluded that I am probably just reacting to hidden gluten in something in my diet. I have cleaned my kitchen, given away anything questionable and still feel like I am being glutened by something! In the past I had always thought that things that didn't have gluten ingredients or a disclaimer were probably fine, and that things labelled 'gluten free' would be definitely safe, but now I am questioning everything! Getting really frustrated with trying to figure out what it is, as I seem to have a more delayed reaction than most, so makes it difficult to pinpoint even which meal has made me sick. 

In an attempt to figure this out, I thought I would try the Fasano Gluten Contamination Elimination diet and see if I start feeling better, and then slowly try to reintroduce foods one at a time to determine whether I react or not. Has anyone tried this? It's a very restrictive diet, if anyone has any tips that would be helpful, I'm on day 2 and don't want to get discouraged!

SO...when you  doctor retests your antibodies, they aren't coming down?  Or there is some other food, ingredient or something like FODMAPS that might be  your problem?  The Fasano diet is usually for people who can't get their antibodies down on a conventional gluten-free diet.  

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I don't know what that diet is but I know a lot of us celiacs have leaky gut and small intestine bacterial overgrowth.  Please look into Auto Immune Paleo Protocol.  It actually proven to help with many auto immune conditions where people can't get their inflammation in check.

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Hi Paigey Pants

I've not tried it yet but I intend to, once the Christmas gluten-free treats are finished.  Probably a couple of days into the new year.

I'm going to go down this road as I have recently been tested and have elevated TTG, yet I thought I was being good enough.  I can see stuff is probably sneaking in from my shared kitchen; in the last few months prior to testing I dared to eat out a few times.  I was unobservant enough to take an iron supplement that had gluten in it, that sort of thing.

But I thought even though there could be traces of gluten coming in from here or there, this way will hopefully bring my numbers down if sneaky gluten is the problem. Radical but worthwhile. Since my diagnosis I've had all sorts of annoying symptoms (rib pain, neuralgia in my face, hair loss that comes and goes, gastritis etc etc) and if I feel a whole lot better in a few months I shall know that it is gluten. 

But being a wholefood diet I've also concluded that even if it doesn't bring my numbers down, it will be doing me a whole lot of good.  I've recently had a big birthday and this way I trust I shall be as fit as I can to face whatever the next half century has in store!

I do hope your diet goes well.  

 

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Thanks for the suggestions, I have no idea about my antibodies, I don't have a family doctor I just try to see the same doctor at the walk-in when I can, and he suggested I make sure I have eliminated every trace of gluten from my diet for a while and if I don't see improvement he will refer me to a dietitian.

If this doesn't work after a while I am definitely keen to try some other type of elimination diet or protocol, this just seemed like a good place to start. 

I'm a very impatient person, how long do you think it would take to feel an improvement if this is effective for me? I don't want to give up too early, but I also don't want to waste time if this isn't helping and I need to be trying something else!

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1 hour ago, PaigeyPants said:

Thanks for the suggestions, I have no idea about my antibodies, I don't have a family doctor I just try to see the same doctor at the walk-in when I can, and he suggested I make sure I have eliminated every trace of gluten from my diet for a while and if I don't see improvement he will refer me to a dietitian.

If this doesn't work after a while I am definitely keen to try some other type of elimination diet or protocol, this just seemed like a good place to start. 

I'm a very impatient person, how long do you think it would take to feel an improvement if this is effective for me? I don't want to give up too early, but I also don't want to waste time if this isn't helping and I need to be trying something else!

It would be 3-7 days to find out your antibody results.  That would tell you if it's even worth doing the Fasano diet.  Maybe your issues are something besides gluten.

 

i think for the Fasano diet, you do it it for several months and then retest your antibodies.  I would have to look that up.

Edited by kareng

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I get DH and had to adopt the Fasano-ish diet to put a stop to the rash. Though as others have pointed out, your continued symptoms could be due to something else. If you get non-GI symptoms that are more specific (DH, ataxia) like myself, one can be a bit more certain that the issue is small amounts of gluten present in what would otherwise constitute a proper gluten-free diet.

I started with the Fasano diet after my rash/other symptoms seemed to persist, despite being strictly gluten-free for about 2 years. Originally, I followed the diet as described in the original paper, with the only exceptions being coffee (whole bean), wine, chocolate chips (Enjoy Life), peanut butter (Kraft natural) and a rice-based loaf from a local bakery. I figured that these were pretty low risk foods, but was willing to cut them if things didn't improve. After about 3 months of this, there was much improvement, so no need to cut my favourite things!

I then started to add back some "low risk" items that were forbidden on the Fasano diet, like certified products. It seems that for me, the problem is most gluten-free alternative foods like bread, flours, cookies, etc. Through some experimentation and contact with companies/website scouring, I have developed the hypothesis that the central issue for me is cross-contact with oats during production; I react very strongly to oats of all kinds (sick for a month from doing the oat challenge). If oats are considered gluten-free by a company, there is little reason a company would bother doing a thorough clean or be concerned about sharing lines with their other gluten-free stuff, meaning that it might be possible for traces of oat to be in otherwise oat-free products. Gluten-free alternative products made companies that do not use oats at all in any product or do not produce on lines that use them appear not to cause me problems. Unfortunately, these companies are few and far between these days...

For many, this will sound a bit fringe of course, but this is the super sensitive forum. In my case, I am fairly confident in this hypothesis as I get both DH and GI symptoms when I ingest gluten. DH is a specific response to ingested gluten, and when combined with acute GI issues, it's hard to imagine it's something else. The other piece of the puzzle pointing to oat CC is that the gluten-free alternative products that I can handle have similar ingredients to those that I cannot (ie. thickeners, gums, various gluten-free grains etc.).

Anyways, this may not be your issue, but it might be something to think about. If you've ruled out other issues, the Fasano diet might be a good place to start and will at least allow you to troubleshoot what your problem is. Might not be the same as mine, but having a blank slate allows you to systematically figure things out by adding things in and taking them out after you've established a good baseline.

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That's what I was thinking, right now I am having such a difficult time pinpointing what is going on, it seems like it will be a lot easier to determine with the limited diet. 

I agree it could be something other than gluten, but I have had everything tested that my doctor is willing to test. Next time I go in I'll see if we can check my antibodies, but he has never suggested it, so might not be willing. 

I am thinking that after following this diet for a while, if I try to reintroduce other foods slowly I might discover other food issues, but most days I feel a mild form of what I have felt when I have been severely glutened in the past, so it would make sense if I was being mildly glutened! 

I have definitely learned so much in the past few weeks about how gluten free labelling and certification work, and all of the potential for cc, I had always just been a label reader but I'm discovering that is not always enough!

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8 hours ago, PaigeyPants said:

That's what I was thinking, right now I am having such a difficult time pinpointing what is going on, it seems like it will be a lot easier to determine with the limited diet. 

I agree it could be something other than gluten, but I have had everything tested that my doctor is willing to test. Next time I go in I'll see if we can check my antibodies, but he has never suggested it, so might not be willing. 

I am thinking that after following this diet for a while, if I try to reintroduce other foods slowly I might discover other food issues, but most days I feel a mild form of what I have felt when I have been severely glutened in the past, so it would make sense if I was being mildly glutened! 

I have definitely learned so much in the past few weeks about how gluten free labelling and certification work, and all of the potential for cc, I had always just been a label reader but I'm discovering that is not always enough!

Get a doctor and get the recommended follow up for Celiac!  Stop playing with your health..

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