Fasano Elimination Diet and Juices/Beverages

[Alaskaguy]

Hello All,

(I"m sorry if this is posted in an inappropriate location --- I was not sure just exactly where this subject would be most appropriately placed.)

I have just started the Fasano Gluten Contamination Elimination Diet a few days ago, and I think I have a pretty good understanding of it, but I am still unclear about one aspect of it, and that is processed fruit and vegetable juices.

In the Fasano Diet guidelines, it states that "100% fruit and vegetable juices" are permissible, but does that mean ONLY 100% fruit and vegetable juices that one prepares oneself, or does it also cover commercially made juices as well?  For example, I have a lot of orange juice frozen concentrate that I would often use, but since that was prepared in a commercial facility, would it be automatically off limits?  Likewise, what about V-8 vegetable juice, or other bottled or canned but 100% pure fruit and/or vegetable juices?  I'm getting rather sick of just plain water!  (I have to eliminate milk on my particular diet as well, so I don't even have that option).

I did call the manager of the facility where they process the orange juice frozen concentrate, in Florida, and he assured me that they ONLY process products derived from oranges in that facility, not any other fruits, or even citrus fruits, much less anything that could potentially contain grains.  So would that be good enough to assume that this frozen concentrated orange juice is OK for me to use on the Fasano Diet?

Similarly, there is a 100% Concord Grape Juice sold at Costco under the "Kirkland" brand name, which is bottled in a facility that handles only that one product and a few other 100% pure, not-from-concentrate fruit juices.  I would think that this would be sufficient guarantee that it should be safe for a gluten-free diet, even on the Fasano Diet, but is that an unreasonable assumption on my part?

For that matter, I do not understand why plain tea (black or green) is considered OK, but ANY herbal teas are not.

I just wish that Dr. Fasano and his team were more clear about acceptable beverages under this elimination diet, and gave the rationale for what they would consider acceptable or not in that regard (they are also very ambiguous on spices, as well, which is causing me lots of uncertainty and annoyance.)

[kareng]

The point of the diet is not to give someone lots of choices.  The point is to severely limit the foods for a short period of time to be absolutely certain no gluten can sneak in.  

So the fact that some herbal teas are made with barley might be why they don't want to even chance that.  

I would guess that the OJ you described would probably be fine.  The fact is, I have seen people who really are serious about the Gluten Elimination Diet and others that follow parts of it.  I suppose it depends on what you are trying to accomplish.  

[Alaskaguy]

32 minutes ago, kareng said:

The point of the diet is not to give someone lots of choices.  The point is to severely limit the foods for a short period of time to be absolutely certain no gluten can sneak in.  

So the fact that some herbal teas are made with barley might be why they don't want to even chance that.  

I would guess that the OJ you described would probably be fine.  The fact is, I have seen people who really are serious about the Gluten Elimination Diet and others that follow parts of it.  I suppose it depends on what you are trying to accomplish.  

Kareng, I think you are fundamentally incorrect in stating that "the point of the (Fasano) diet is not to give someone lots of choices".  The point of the diet is to allow healing by eliminating all potential sources of gluten, not to unnecessarily limit one's food options for no good reason!  The fact that the diet IS rather limiting in food options is a secondary aspect of the diet, not it's primary goal.

I do indeed want to follow both the letter and the spirit of the diet, in order to accomplish its intended purposes , those being the calming of my still-agitated immune system and attendant DH symptoms, and then allowing the testing of individually reintroduced foods down the road.  I am not looking for "outs" or to try to borderline cheat on the guidelines by any means!  But it would be pointless, counterproductive and just plain stupid to needlessly limit what might be fundamentally safe options for those already stressed by having to go on this diet.  I mean, the point of the entire program is not about draping oneself in sackcloth and ashes, self-flagellation and needless self-deprivation, but about healing.

There IS a problem here with these dietary guidelines, and it that, at least as far as I have seen them (and yes, I have read Dr. Fasano et al's original paper), they are not exactly clear when it comes to beverages, and almost totally opaque when it comes to spices.  You may argue that spices are just a quibble, but I would strongly disagree, especially when one is on an already severely restricted, monotonous and otherwise rather bland diet.

With that said, unless and until I learn otherwise, I am still planning on using essentially no spices while on this diet, aside from those that can be obtained fresh and unprocessed ---- garlic, ginger, onions, hot peppers, and fresh herbs.  I was able to find an online source for nutmegs in the shell (most people don't know that nutmeg actually grows inside a shell, like a pecan), so I HAVE to presume that those are OK --- and they'll be great to season-up what I see as a steady stream of sweet potatoes over the coming months.

Please understand that I am not arguing with the restrictions, or with the severity of the restrictions, of the Fasano Diet --- I am only asking for clarity in applying those restrictions.

[cyclinglady]

I suppose the juices you described would be fine, but remember,  you are trying to heal from inflammation.  Sugar, even in the form of juices, is inflammatory (start researching that topic).  I personally only consume coffee, water and black tea.  Boring?  Yes.  It is safe for not only my gluten-free diet, but in managing my diabetes (TD2).   The diet does allow for Gatorade.  There are other options for obtaining electrolytes and most people do not exercise enough to ever warrant it.  But some kids will drink it and if they are malnourished, they might need something more than water.  Most people who are required to try this diet are severely ill and have often been diagnosed with refractory celiac disease.  

Go for the spices as long as they are fresh or have not been processed.  Again, the diet was designed for those with severe intestinal damage or have additional food intolerances.  

The diet is meant to be done for just a few weeks.  Although restrictive, it can be done.  Would you rather have weeks of chemo, a biologic, or steroids?  

If you have to time, consider listening to these videos for fun.  The first silly video is about Orange juice.  The juice sold in stores is not the same as the juice from my Valencia tree in my yard:

https://m.youtube.com/watch?v=ZuYPdTvqitg

Next is a video found on UCTV (University of California).  This pediatric endocrinologist  (UC San Francisco) explains why is his patients are developing non-alcoholic fatty liver disease.  Yes, my tiny ballerina niece was diagnosed with fatty liver disease last year.   It resolved when she ceased drinking fruit juice and sodas.  Boring, but effective!  

https://www.uctv.tv/shows/sugar-the-bitter-truth-16717

Obviously, you are a foodie.  I was like you.    I was a baker.  I won awards!  But being diagnosed with celiac disease was a big game changer.  Think beyond food.  Think about engaging in some activity that will bring you as much joy.  Think about NOT having a DH rash.  ?

 

 

[Alaskaguy]

CyclingLady, you make a good point about all the sugars in fruit juices.  I was not intending to drink a steady stream of them, just maybe a small glass of orange or grape juice once a day, for example.  But I agree with you that, particularly nowadays, far too many people drink FAR too many sugary beverages!    The way I see both kids and adults nowadays sucking down the pop, in particular, is downright creepy --- when I was a kid, that was maybe a once-a-week treat for us, and not a Super-Mega-Macro-Giga-BigGulp worth of it, either.

You make an interesting point, though: "Most people who are required to try this diet are severely ill and have often been diagnosed with refractory celiac disease."  And I suppose that most people who try this diet are doing so due to severe and/or unresolved gastrointestinal damage.  Whereas I am trying it to get my DH under control --- my former and relatively mild GI symptoms all resolved rapidly last year while on the conventional gluten-free diet.  But that still doesn't mean that I should not follow all of its guidelines.

[kareng]

It is meant to be restrictive -  so you don’t run any risk of cc with gluten.  That really is the fundamental basis.  It isn’t meant to be fun or interesting.  It is meant for people who are very sick and the normal gluten-free diet isnt working.  It is a last step before medications.  It is not a lifestyle or a life long diet.  So, for those who really need it for its original intent- they are going to follow it to the letter with a doctor , who is versed in Celiac.  

Lots of people try parts of it on their own as a way to sort of “shore up” their gluten free diet.  So, interpret it how you think it will help you best.  I see many people use it as a starting point when they are new and need time for some healing and time to figure the whole gluten-free food life.  Some go back to it when they have had some gluten and need to rest their gut.  

For drinks - maybe iced tea or water with a squeeze of fresh lemon, lime or orange?  Maybe those water infuser things that you add fresh mint or fruit to your water?  Simple and easy to digest.

Just saw that you are doing it for DH control.  I think I saw that it is not likely to help out of control DH.  But it is certainly worth a try before taking medications.  

[Alaskaguy]

4 hours ago, kareng said:

Just saw that you are doing it for DH control.  I think I saw that it is not likely to help out of control DH.  But it is certainly worth a try before taking medications.  

Kareng, I am a bit concerned by your statement here.  I no longer have "out of control" DH, but smaller, more scattered, and more readily resolving (for the most part) flareups.  And it may be that I am just having what would be "normal" for a person in my situation, being 'only' 13 months into the gluten-free diet.  I will readily admit, and perhaps should stress, that the situation is very much better than it was before I went gluten-free, including the fact that my former GI symptoms have totally resolved, and did so quite some time ago now.  But shouldn't the Fasano Diet equally help somebody with DH as it would those who have only the more typical gastrointestinal symptoms?

I do realize that my DH might very well not resolve, even on the Fasano Diet, for a somewhat extended period yet --- three months, six months, a year maybe?  But having "plateau'ed out" about six months ago in my healing of the DH, and then having more frequent and somewhat more intense flareups in the last two or three months, I just feel that I need to be more strict and more pro-active in trying to knock this down.

[cyclinglady]

There are very few if any specific  studies regarding the restrictive gluten-free diet (aka “Fasano) for DH that I have found (anyone see any?).  We all know that DH is often considered the stepchild to celiac disease.  Very little research has been done in comparison to celiac disease.      Other forum members who have DH have reported that this diet or one that basically eliminates processed foods, (even certified gluten-free processed foods)  has worked.  People with DH seem to be more sensitive or maybe their celiac disease is simply visible.  The article below states that They are most likely to adhere to the diet and avoid going out to eat.  

https://www.allergicliving.com/2017/07/11/celiac-thats-skin-deep-the-mysterious-rash-sparked-by-gluten/

https://www.todaysdietitian.com/newarchives/0816p14.shtml

 

[Alaskaguy]

3 hours ago, cyclinglady said:

There are very few if any specific  studies regarding the restrictive gluten-free diet (aka “Fasano) for DH that I have found (anyone see any?).  We all know that DH is often considered the stepchild to celiac disease.  Very little research has been done in comparison to celiac disease.      Other forum members who have DH have reported that this diet or one that basically eliminates processed foods, (even certified gluten-free processed foods)  has worked.  People with DH seem to be more sensitive or maybe their celiac disease is simply visible.  The article below states that They are most likely to adhere to the diet and avoid going out to eat.  

https://www.allergicliving.com/2017/07/11/celiac-thats-skin-deep-the-mysterious-rash-sparked-by-gluten/

https://www.todaysdietitian.com/newarchives/0816p14.shtml

 

Dziekuje bardzo for that information,, CyclingLady!

And you are correct, at least in my case --- I have been EXTREMELY reluctant to eat out in restaurants since going gluten free last year, and have only done so a small handful of times, under very strict conditions and only after talking to both the serving staff and the chefs/cooks at some length.  Now, on the Fasano Diet, it is simply not an option.

Honestly, I do not understand this recent mania for eating out ALL the time!  Not only is it less healthy, in general, than preparing one's own food, it is VASTLY more expensive than eating at home as well!.  Are all these people I see crowding the infinitude of restaurants nowadays REALLY that rich, to be able to routinely (if not almost daily) afford a $40 or $50 meal, when they could eat as well or better at home for 1/5 or 1/10 the price?  I just don't get it.  It seems to me to be just another reflection of how the average person has been becoming less and less self-reliant, and more and more dependent on systems fundamentally outside of their own personal control.

[cyclinglady]

Wow!  I can say thank you in Polish, but can not spell it. 

This is a bit off topic, but I will post this here and then open a new topic.  

A month or so ago, a guest commented on an article that Celiac.com had published.  The guest mentioned that she has been a celiac for decades, long before the gluten free craze.  She noticed that she is now getting more gluten exposures compared to the years when there were very few gluten free processed foods on the market.  Interesting.

With 30 to 60% of celiacs (depending on the study) not healing, can we blame the patients or are we really getting too much gluten into our diets?  Did we rush too quickly in establishing gluten guidelines?  Is 20 ppm too much for some celiacs?  The list of symptoms for celiac disease is long and varied.  I would imagine that amounts of gluten that would trigger a reaction would vary too.  I found this study which states:

“It seems that GFD are based more on profit than on health. The recommendation of <20 ppm gluten for a GFD was originally based on a study in only 49 adults with biopsy-proven celiac disease who were treated with a GFD (13).”

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5421124/

Pretty shocking.    Just 49 patients and yet the FDA and other EU countries approved of the  <20 ppm guideline.   Again, this might be fine for some but maybe not others.  

I personally avoid processed foods and grains.  I went grain free when I became insulin resistant.  Oddly enough I actually finally felt well after I gave up grains.  I would cheat occasionally and usually pay the price.  Not terribly sick but off.  Was it gluten or just food additives?  When I do eat processed foods, it must be certified or recommended by a person who has DH (like Jane Anderson a journalist who has DH).

 Two years ago after a gluten exposure (and I have no idea how but I suspected a prescription drug), I struggled with new symptoms.  Some resolved months later but GERD like symptoms persisted.  My GI suggested another endoscopy, but I trialed the Fasano diet.  Months later,  I was still having issues so I consented to do the endoscopy which revealed healthy villi but autoimmune gastritis.  Did the diet work?  I would like to think so.  But I can not guarantee it.  It was certainly worth trying it and I have no regrets.

I am not advocating that a celiac needs to go grain free.  It just works for me (and my blood sugar is happy).  If anyone chooses to do this course of action, they should consult a dietitian to insure they are getting adequate nutrition and they should let their doctor know.  This also applies to the Fasano diet.  Why?  Because most people do not know about nutrition.  And when you are sick, you might need some guidance!  

Finally, I agree!  Who can afford to eat out?  It must be contributing to our obesity and diabetes crisis.  I know Dr. Robert Lustig (Ped endocrinologist from UC San Francisco) advocates: 1) contribute, 2) connection, 3) cope, and 4) cook.  This will lead you to happiness!  

https://en.m.wikipedia.org/wiki/Robert_Lustig

This is really getting of topic!  I will need to start another thread!