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Alaskaguy

Seeming futility of Fasano Diet with DH

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Hello All,

After looking into trying the Fasano Gluten Contamination Elimination Diet in order to try to get my recurring outbreaks of Dermatitis Herpetiformis under control despite having been gluten-free for just over one year, I am terribly discouraged by the seeming futility of the endeavor.

Firstly, having read the entire medical paper in which the Fasano Diet was first presented, it seems to me that it is implicitly geared towards those celiac patients who ONLY have gastrointestinal symptoms, which typically occur within 24 hours of ingesting any problematic food.  This would make the diet's two to three month trial period more than enough for THOSE celiacs to clear their systems of any possible gluten-related symptoms, as well as make the determination of problems caused by the re-introduction of any problematic foods rather quick and obvious.

However, none of that is true for those of us with DH.  Despite having been gluten-free for 13 months now, how do I know that if I go on the Fasano Diet, my system will be cleared of symptoms (and the gluten-related antibodies in my skin) within even a few months?  What if it would inherently take me a few more YEARS to really rid myself of gluten-related antibodies in my skin, Fasano Diet or not?  I simply could not eat such a highly restricted diet for that long --- and I have little doubt that malnutrition of one form or another would crop up after years on such a restricted diet.

Also, regarding the Fasano Diet, as restricted as it is, apparently we with DH have to avoid high-iodine foods as well.  So, there goes the milk, and the other dairy products, and the fish, AND the eggs that are part of that diet!  What few foods are then left on that already limited diet would seem to make for an unrealistically limited and unhealthily restricted diet.

But the biggest problem I see here is the (unknown) lag time between problematic food consumption and display of symptoms with DH, a lag time that I STILL have no clear idea of.  Days, weeks, months?  So even if the diet did seem to work in clearing DH after a few months on it, how could one realistically evaluate foods that are reintroduced on it, when one does not even know how long the symptoms might take to appear?  Again, this seems geared towards those who ONLY have gastrointestinal symptoms, not DH.  And even if I knew that my symptoms usually appear within, say, two weeks, what happens if (when) I reintroduce a food, and it DOES cause symptoms --- am I back to square one, and have to do the entire initial diet again for several months?  And even if I happen to NOT reintroduce any problematic food (which, given my present situation, would be essentially impossible), then I could realistically only reintroduce maybe one food per month --- so how many YEARS would it take me to get back to a semi-normal gluten-free diet, even in the best case scenario?

To be honest, I am so depressed right now (as I squirm from itching from a DH outbreak whose cause I cannot begin to guess at), that thoughts of suicide are passing through my head.

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I had severe DH for over 40 years. It was the first severe celiac symptom I had. Not everyone takes years to see the outbreaks decrease. I only had to avoid iodized salt and stuff like seaweed. I did not have to give up dairy products after the first couple months (after my gut healed a bit) and when I added them back I started with low lactose foods like hard cheeses and yogurt.  I was able to consume some gluten free processed foods like bread, crackers etc with no issues. It is a good idea to cut down on gluten free prepared foods and go with as much whole food as you can but don't restrict yourself so much that things seem hopeless. I found it was very important to be really certain all topicals were gluten free. Much harder when I first started but now many companies make shampoos, soaps etc that are safe. Do make sure your significant other goes with gluten free topicals as much as possible and that teeth are brushed well before kissing. Dh can be a real bear to heal but it is not hopeless. For now drop the obvious and see if that helps. It can take time for the antibodies to clear enough so that you are not always covered in lesions but CC will cause a breakout even years after healing although the breakouts should lessen in severity. Don't get discouraged. Hopefully your gut has healed by now, if not you are likely getting gluten somewhere. If you are then the antibodies will not get the chance to clear. Everyone is different but hopefully just being very careful and making sure not to take chances with restaurants for a while will help.

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Thanks for your response and suggestions, Ravenwoodglass. 

You know, the ONLY thing that is giving me any hope at this point is the fact that my former GI symptoms, which I had had for most of my life, or let's say 45 years at least, did indeed heal rapidly after going (apparently semi-)gluten-free (I have had the DH for maybe 'only' seven years or so, more badly for maybe the last three or four of those years).  But those GI symptoms were not typical, from what I gather, of those that others with celiac disease suffer.  Mine did not involve anything immediate, no bloating or stomach cramps or nausea, but manifested as problems with bowel movements --- constipation, cramps, discomfort and difficulty.

in these past 13 months, though, I've had two or three brief (a week or so) periods where the DH had almost become unnoticeable, only to come roaring back.  And I have barely eaten outside the house at all in those 13 months (twice in a dedicated gluten-free restaurant), and have NEVER even thought of "cheating" by purposely eating a gluten-containing food.  Also, my entire house is gluten-free.  I have not eaten any sea vegetables in those 13 months, no dairy in the last six or seven months, and very little gluten-free processed foods aside from some pastas, mostly brown rice  pasta (Cadia brand).

My best guesses for what has been continuing to cause me grief would be purity-protocol oats (eaten maybe 6 or 7 times in the last six months), teff grain and/or teff flour (purchased directly from Maskal Teff in Idaho, which they test for gluten at the 20 ppm threshold), Silk brand almond milk, or gluten contamination from dried beans.  I did eat some salmon chowder three or four times in the last few months as well (had made a big batch in December, and froze several containers of it), and while salmon is supposed to be noticeably lower in iodine than white fish like cod or halibut, it is obviously still seafood.  Salmon is such a staple for us here in Alaska that it was hard for me to try to give it up entirely, although now I guess I will.

I don't use much salt in cooking or on food, and what salt I do use is non-iodized sea salt.

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Do you use lentils, dried or otherwise? Lentils are sooooooooo often cc'd with wheat. 

The Silk almond milk could be a problem Alaskaguy. Silk also makes oat milk. That right there may be the culprit along with the oats. 

I was not aware you had been dairy free for 6 or 7 months. 

 I see Cadia has products containing oats. Have you checked with them regarding what lines those are processed on in relation to the gluten-free pasta?

 

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35 minutes ago, squirmingitch said:

Do you use lentils, dried or otherwise? Lentils are sooooooooo often cc'd with wheat. 

The Silk almond milk could be a problem Alaskaguy. Silk also makes oat milk. That right there may be the culprit along with the oats. 

I was not aware you had been dairy free for 6 or 7 months. 

 I see Cadia has products containing oats. Have you checked with them regarding what lines those are processed on in relation to the gluten-free pasta?

 

Squirmingitch,

Yes, I have made one batch of lentils within the past six months, maybe two months ago.  I have always been aware of grain contamination with lentils, having seen it in the past, so I did carefully sort through the lentils to find any stray grains (which I did not see).  However, I did not try to wash them before cooking them, which I now realize I probably should have done.

I did talk to the people at Silk just a couple of days ago, to verify the (conventional) gluten-free status of their almond milk.  However, it did not occur to me to ask about possible shared equipment used for their oat milk as well --- but I will call them tomorrow to ask that.  Regardless of their answer, I have decided to give up the almond milk (or ANY form of milk, natural or otherwise) for this Fasano Diet test, as long as it may go.

I've also decided to give up lentils while I'm on this Fasano elimination diet, and maybe ALL dried peas and beans as well.   I'm a bit surprised that they even list dried beans as "acceptable" for it, given the potential for cross-contamination with wheat, rye or barley.

I did not know that Cadia also made oat-containing products.  I will call them also to ask about possible shared equipment that might be used in common with their rice-based pasta.

Those were all good points to bring up --- you are obviously (even) more on the gluten-free ball than I am!

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Here is an old thread on the topic.

It seems like there is a lot of variation in how long the symptoms last, but for some people it will go away quickly or they can tell right away if a food is problematic.

There is evidence that the AIP diet works autoimmune digestive problems, such as Crohns and IBS.  I am not sure what people success rate is for DH or other specific auto immune disorders. Corn is mentioned as a problematic ingredient on the thread that I posted above.

The Fasno diet may work, for some people for other reasons besides eliminating cross contamination. I don't think anyone knows for sure. 

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5 minutes ago, ch88 said:

Here is an old thread on the topic.

It seems like there is a lot of variation in how long the symptoms last, but for some people it will go away quickly or they can tell right away if a food is problematic.

There is evidence that the AIP diet works autoimmune digestive problems, such as Crohns and IBS.  I am not sure what people success rate is for DH or other specific auto immune disorders. Corn is mentioned as a problematic ingredient on the thread that I posted above.

The Fasno diet may work, for some people for other reasons besides eliminating cross contamination. I don't think anyone knows for sure. 

Thanks for that information ch88!  I will check out that thread that you referred to.

Interestingly, one thing that I did make a batch of within the past couple of months, during which my Dh problems have started getting worse again, was posole, a Mexican soup that contains a lot of hominy, which is a special kind of treated corn.  I'll be keeping my eye out for reactions to corn down the road, after this Fasano Diet test period.

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Don't forget that oats themselves have a prolamin (avenin) that is similar to the prolamin in wheat (gliadin).  Therefore, a lot of people who react to wheat and gluten react to oats, too--oats themselves.  If you are eating a diet that includes a lot of oats, that may be your culprit.  I react to oats themselves so I have given them up.  Hang in there!  I know how demoralizing this all is.

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So ch88 gave you a few more things to think about. 

I know hominy! (Southern gal here). Here's a thought.....I wonder if the lye has any effect on the dh? I have often wondered myself if there aren't other "aggravators" like iodine is an aggravator. For instance, I adore these Toasty Coconut Macaroons

https://www.foodnetwork.com/recipes/alton-brown/toasty-coconut-macaroons-recipe-1912139

Now, there isn't a reason in the world that these should logically make my dh flare. Egg whites - have them with no problem, gluten-free vanilla extract - have that with no problem, dash of salt - have that with no problem. That brings us to the coconut which has Propylene Glycol & Sodium Metabisulfite. My gut (ha-ha) tells me it's one of those 2 things. But the bottom line is that I absolutely have a dh reaction every single time I eat these. Sigh. 

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1 minute ago, fourchickens said:

Don't forget that oats themselves have a prolamin (avenin) that is similar to the prolamin in wheat (gliadin).  Therefore, a lot of people who react to wheat and gluten react to oats, too--oats themselves.  If you are eating a diet that includes a lot of oats, that may be your culprit.  I react to oats themselves so I have given them up.  Hang in there!  I know how demoralizing this all is.

Yes, Fourchicks, that is a good point, and I had indeed been sporadically using purity-protocol oats (purchased directly from Gluten-Free Harvest in Wyoming) over the past six months, and much more regularly in the six or seven months before that.  But going on the Fasano diet as of today, I am giving up ALL oats, and all grains in general, for at least three months to see what happens with my DH.

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3 minutes ago, squirmingitch said:

So ch88 gave you a few more things to think about. 

I know hominy! (Southern gal here). Here's a thought.....I wonder if the lye has any effect on the dh? I have often wondered myself if there aren't other "aggravators" like iodine is an aggravator. For instance, I adore these Toasty Coconut Macaroons

https://www.foodnetwork.com/recipes/alton-brown/toasty-coconut-macaroons-recipe-1912139

Now, there isn't a reason in the world that these should logically make my dh flare. Egg whites - have them with no problem, gluten-free vanilla extract - have that with no problem, dash of salt - have that with no problem. That brings us to the coconut which has Propylene Glycol & Sodium Metabisulfite. My gut (ha-ha) tells me it's one of those 2 things. But the bottom line is that I absolutely have a dh reaction every single time I eat these. Sigh. 

Wow, Squirmingitch, talk about a coincidence!  I have ALWAYS loved macaroons, but never made them until, ironically, last month.  For the flour in them, I used oat flour one time, and potato starch in the other batch.  I can't say specifically that I reacted to them, but again, I've been having more problems with the DH over the past couple of months, and they may well have contributed to that.

But on the subject of sodium metabisulfite, I have been getting hints that foods containing that compound, or sulfites in general, might have been causing me DH flareups as well.  Again, it is very hard for me to conclusively say, as I still really don't know how long the lag time is for me between consumption of a problem food and the DH.  But I have had flareups shortly after consuming dishes made from dehydrated potatoes, for example (treated with sodium bisulfite), and more recently after eating some dried fruit (jackfruit) that had been treated with sodium metabisulfite as well.  Very interesting that you bring sulfites up!

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I know the Fasano diet is rough, especially at first. But you CAN do it. And Alaskaguy, give yourself a break & have a tiny glass of milk once in a while. Like I said, I do the dried beans but NEVER touch lentils. I mostly do navy beans & pinto beans. BTW, pinto beans are going to have more iodine than the navy beans. I remember that from when the thyca.org site used to list more specific foods that were higher in iodine content. They have since changed their website & you can't get the detailed list you once could. You can make navy bean soup with saving the baked chicken drippings & using that for the stock or pork drippings if you eat pork. Just sort very carefully & wash, wash, wash, & wash again. 

If you like walnuts, get some of those & I actually washed them in the shell & laid them out to dry off. Then you can have nice snacking food. 

Yes, the sulfites could be causing a problem. There are even people with sulfite sensitivities so it's totally possible that we can have issues with it. That recipe I linked to does not contain any thickener at all & it's so easy! Plus, I love the toasty flavor of the coconut. 

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So, Squirmingirch, you do not ever use lentils, even if you give them a very thorough sorting and washing?  I was going to give them up as a matter of course with this Fasano Diet test, but I'd like to hope that I could use them some day after that is over with, following the procedures that I outlined.  But do you feel that they should be permanently avoided even then?

You know, you could try making macaroons with unsweetened, un-sulfite-treated coconut.  That would make for an interesting test, to see if the sulfites are really the problem for you (and maybe for me).  Of course, you'd have to increase the sugar in the recipe somewhat in that case, and unsweetened flaked coconut has a harder, drier texture than the sweetened kind, so you might have to tweak it somehow to make the coconut softer.  Or maybe it would work fine anyway?

It would certainly open up the possibilities on this Fasano Diet if I could add dried beans to the list of acceptable foods.  I have made innumerable batches of bean soup in the past --- it is one of my staple foods.

To your knowledge, should I be concerned about grocery-store chicken and turkey as regards this diet?  I no longer have any frozen chickens that I helped butcher myself, so I have to resort to meat from the store.  I have read many references to grocery-store meat being injected with various watery solutions, even broth, and I did buy a whole chicken at the store today, from which I was going to make soup.  But I did plan on calling Foster's Farms about it tomorrow to get the rundown on just what, if anything, they may have injected into it.  The label only states "May contain up to six percent retained water", which the guy at the meat counter said only relates to water that is absorbed in the factory washing process, but I want to be sure.

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Before celiac (I call it BC :lol:), I was not a big lentil eater. It was a once in a blue moon kind of thing so I do not miss them at all. Everyone needs to do what they think they should/can. Being that I can take lentils or leave them then I choose to leave them. Are you a member of Gluten Free Watchdog? I am. It's well worth it. It seems like people are always finding wheat in their lentils. Wheat & other gluten grains. Lentils are grown in wheat fields so it's not surprising in the least. People send Tricia photos of what they found in their lentils (dried) & often she sends them to be ID'd or tested & sure enough --- gluten grains. Now, a person can be super careful in sorting & washing but for me personally, I would just as soon not even go there if you know what I mean. I do not love lentils enough to ever risk me missing something in there. 

I was thinking along the same lines as far as the coconut. I might just try that.

I make split pea soup a lot too so you could do those. I was making black bean soup but for some reason the black beans didn't really agree with me. If I were you, I would absolutely do the dried beans. Oh, & this has nothing to do with dried beans but have you ever made this soup?

https://www.simplyrecipes.com/recipes/butternut_squash_apple_soup/

I buy fresh chicken all the time - fresh meats in general, pork, beef, chicken. You shouldn't have any problem with them. Oh & game hen too. I usually only see Tyson brand game hens here so that's what I buy. Call Foster's Farms & see what they say but I bet it will be fine. I hardly ever buy whole chickens but rather cut up chickens - mostly breasts & wings, sometimes drumsticks & it never says there are any additives in it. Turkey I buy frozen breasts. Don't know if you have the brands there but I love Honeysuckle White (Pride of the Farm is also theirs). Honeysuckle White even says gluten-free on it. It comes with a gravy packet that is gluten-free too but I think the packet sucks! Yuk! Mostly I use the juice & make turkey vegetable soup. Butterball has gluten-free turkeys too. 

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Regarding the lentils, they have always been a favorite of mine, but recognizing the gluten grain contamination in them (mostly just from having seen it myself over the years, not so much from reading about it), I guess I have shied away from them since going gluten-free.  But I have some very good Ethiopian recipes for various lentil dishes.  Not that I want to make any of those right now anyway, as they involve a LOT of different spices, many of them directly from Ethiopia, and I have no way to investigate their gluten status.  One would presume the risk is negligible, as most of these are whole spices and not ground, but the berbere powder is made in Ethiopia.

What about potatoes?  I was quite surprised to see that they are so relatively high in iodine --- which I gather, though, is mostly concentrated in the skins.  If I peel them completely, are they OK on a low-iodine Fasano Diet?

What about wine, red wine in particular?  I have read some references to wheat flour paste being used to seal-up the gaps in certain red wine barrels, but other references that claim that this is a wildly overblown concern.  Even so, I have avoided wine since Christmastime, although I would like a glass now and then.  But I'm wary of it.

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I will add my two cents, but will warn you that  I do not have DH.  

Lentils and beans have worked for me.  However, I carefully sort and wash them several times.  Any raw agricultural product is allowed a few errant twigs, rocks and other grains.   I soak them before cooking, so they get another wash.  I like using my instant pot to make quick batches and the beans freeze well to be used at any time for various recipes.  

Wine is fine.  I love red, but I also have Rosacea and red wines trigger it.  I avoid wine for months after a glutening.  I can not digest anything, even gluten free foods without pain.  

I would try white potatoes and avoid the skin.  Sweet potatoes roasted are delicious too.  

I trialed the Fasano diet for several months.  Unfortunately, while it healed my small intestine (per repeat biosies), it did not eliminate my lingering GERD symptoms.  Turns out the Gastritis biopsy showed Autoimmune Gastritis (maybe I should have listened to my GI and had the endoscopy sooner, but instead I blamed gluten since my antibodies were still elevated).  I am considering the AIP diet, but I would hate to give up dairy which I was unable to consume most of my life (my dairy intolerance resolved on the gluten-free diet).  A gluten free diet has proven to heal celiac disease.  But very few studies have been done to see how effective the AIP diet and the one study was geared to IBD patients.  

I am still on a very limited diet due to silly intolerances to Xanthan Gum, garlic and onions, mushrooms and almonds.  I understand your frustration, but feeling better is so worth it.  

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CyclingLady,

Thank you for those comments and information.  You and Squirmingitch have been so graciously patient and helpful with me here, I am very humbled and grateful.

I'm very sorry to hear that you have Autoimmune Gastritis ON TOP OF Celiac Disease!  Damn, trying to sort all that out must have been a chore (and then some).  I've felt almost overwhelmed at times just with Celiac Disease, first upon diagnosis of my DH, then when first going gluten-free, and now with more frequent re-occuring symptoms and figuring out the Fasano Diet.

Gosh, I would die if I could not cook with onions and garlic!  It seems that almost everything I cook starts with onions.   And my extensive wild mushroom collection is my culinary pride and joy.  I gather many different kinds of wild mushrooms here in Southcentral Alaska in the summer and early fall, and then dehydrate (most of) them for later use.  The boletes, in particular, are actually much more flavorful dried than they are when cooked fresh, although the Gypsy Mushrooms are so amazingly flavorful when sauteed fresh with some onions --- a concentrated meaty flavor, almost like essence of beef ---- that I have never brought myself to try to dry them.

It's interesting that you mention an intolerance to Xanthan Gum.  I cannot say for certain, but after having tried a number of different commercial gluten-free baked goods, especially the breads (and not being very impressed by any of them), I have a feeling that Xanthan Gum may not agree with me either.  IF (a big IF) I can eventually go back to my as-yet limited gluten-free baking, I am going to try using chia seeds to help bind them and give them more texture, as I've read that it can do.  But I did repeatedly make what I thought was a VERY good banana bread from 100% purity protocol oat flour (that I ground myself), which even some of my friends who tried it thought was better than the "normal" kind.

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I am on the run here this morning so will make this short & sweet. Potatoes are fine b/c yes, the iodine is in the skins. Just peel them well. Wine is also fine but am I wrong or not - does wine contain sulfites????? I so very seldom drink that I forget. Haven't had anything alcoholic in a couple of years.

I have a banana bread recipe Alaskaguy that does not involve oat flour --- instead it's almond flour. When you're ready LMK & I'll type it out for you. Uses yogurt.

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11 hours ago, squirmingitch said:

So ch88 gave you a few more things to think about. 

I know hominy! (Southern gal here). Here's a thought.....I wonder if the lye has any effect on the dh? I have often wondered myself if there aren't other "aggravators" like iodine is an aggravator. For instance, I adore these Toasty Coconut Macaroons

https://www.foodnetwork.com/recipes/alton-brown/toasty-coconut-macaroons-recipe-1912139

Now, there isn't a reason in the world that these should logically make my dh flare. Egg whites - have them with no problem, gluten-free vanilla extract - have that with no problem, dash of salt - have that with no problem. That brings us to the coconut which has Propylene Glycol & Sodium Metabisulfite. My gut (ha-ha) tells me it's one of those 2 things. But the bottom line is that I absolutely have a dh reaction every single time I eat these. Sigh. 

 Where in the world do you get coconut with propylene glycol or anything else in it?  NOW your Vannila extract WILL have that unless you use pure alcohol based one or use pure vanilla bean powder *Spicey Organics.  Try using Organic coconut without anything else added or treated, omit the extract, and the salt. If the salt is iodized then it could make DH worse, many salts are chemically treated. Go with Himalayan pink salt, again crazy as it might sound try an organic labeled one.

Fun thing I did before for a homemade extract, I use Rum for my own blend, and I tend to put a string of beans in the bottle. https://www.thekitchn.com/how-to-make-homemade-vanilla-extract-cooking-lessons-from-the-kitchn-197785

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1 hour ago, Ennis_TX said:

 Where in the world do you get coconut with propylene glycol or anything else in it?  NOW your Vannila extract WILL have that unless you use pure alcohol based one or use pure vanilla bean powder *Spicey Organics.  Try using Organic coconut without anything else added or treated, omit the extract, and the salt. If the salt is iodized then it could make DH worse, many salts are chemically treated. Go with Himalayan pink salt, again crazy as it might sound try an organic labeled one.

Fun thing I did before for a homemade extract, I use Rum for my own blend, and I tend to put a string of beans in the bottle. https://www.thekitchn.com/how-to-make-homemade-vanilla-extract-cooking-lessons-from-the-kitchn-197785

You can get old-fashioned Bakers brand coconut with all those ingredients at any local grocery or big box store in the US.  This is a product that older folks like me have seen most often for more than 50 years.  Not everyone orders food online (like me) or has access to health food stores which offers organic (no preservatives) coconut.  

Nice tip about making your own the vanilla beans extract.    I used to do this when I baked a lot!  Now I take the lazier approach (pretty cost effective too) with Costco’s vanilla extract.  

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2 hours ago, Ennis_TX said:

 Where in the world do you get coconut with propylene glycol or anything else in it?  NOW your Vannila extract WILL have that unless you use pure alcohol based one or use pure vanilla bean powder *Spicey Organics.  Try using Organic coconut without anything else added or treated, omit the extract, and the salt. If the salt is iodized then it could make DH worse, many salts are chemically treated. Go with Himalayan pink salt, again crazy as it might sound try an organic labeled one.

Fun thing I did before for a homemade extract, I use Rum for my own blend, and I tend to put a string of beans in the bottle. https://www.thekitchn.com/how-to-make-homemade-vanilla-extract-cooking-lessons-from-the-kitchn-197785

Like cyclinglady said, old-fashioned Bakers brand coconut (a Kraft product) at the local grocery store. We don't have any real health food stores here & no, I haven't really been inclined to order online for just shredded coconut. The vanilla is McCormick gluten-free pure vanilla extract & the ingredients are "vanilla bean extractives in water & alcohol" & you can get that at the local grocery store too. 

I already stated I do not use iodized salt, just plain ordinary (& cheap) McCormick salt. People have been using it for generations & lived long, healthy lives. I googled & couldn't find a thing saying it's chemically treated. It does contain an anti caking agent though. I really wish people would get off the Himalayan pink salt thing. It's just salt. It's a fad. It sounds exotic. You pay for the hype. Much like "Moroccan Argan oil", ooooooooooooo sounds exotic, the public will pay big bucks for this stuff! Let's get rich! It's no more special than anything else & it's not going to do any more for your hair than anything else but Jane public gets to say, "I use Moroccan Argan oil in MY hair." That's sort of like Jordache jeans -- you guys are probably too young to remember them. Just another fad but they made a bundle off of them. Today you can't find Jordache jeans yet the good old Levi's are still out there. So much for fads.

Here's some science on Himalayan Pink Salt.

Scroll down the page to find that part:

https://sciencebasedmedicine.org/pass-the-salt-but-not-that-pink-himalayan-stuff/

And here's some more info.:

https://www.verywellfit.com/what-kind-of-salt-is-healthiest-4157937

 

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1 hour ago, squirmingitch said:

Like cyclinglady said, old-fashioned Bakers brand coconut (a Kraft product) at the local grocery store. We don't have any real health food stores here & no, I haven't really been inclined to order online for just shredded coconut. The vanilla is McCormick gluten-free pure vanilla extract & the ingredients are "vanilla bean extractives in water & alcohol" & you can get that at the local grocery store too. 

I already stated I do not use iodized salt, just plain ordinary (& cheap) McCormick salt. People have been using it for generations & lived long, healthy lives. I googled & couldn't find a thing saying it's chemically treated. It does contain an anti caking agent though. I really wish people would get off the Himalayan pink salt thing. It's just salt. It's a fad. It sounds exotic. You pay for the hype. Much like "Moroccan Argan oil", ooooooooooooo sounds exotic, the public will pay big bucks for this stuff! Let's get rich! It's no more special than anything else & it's not going to do any more for your hair than anything else but Jane public gets to say, "I use Moroccan Argan oil in MY hair." That's sort of like Jordache jeans -- you guys are probably too young to remember them. Just another fad but they made a bundle off of them. Today you can't find Jordache jeans yet the good old Levi's are still out there. So much for fads.

Here's some science on Himalayan Pink Salt.

Scroll down the page to find that part:

https://sciencebasedmedicine.org/pass-the-salt-but-not-that-pink-himalayan-stuff/

And here's some more info.:

https://www.verywellfit.com/what-kind-of-salt-is-healthiest-4157937

 

For me it is a bit important....as I have a corn allergy and the dextrose can cause a minor reaction, heck most salt is CCed somehow but I found I can get by using the blocks of pink sea salt and loading pieces into a salt grinder.  PS most salts contain trace amounts of iodine naturally anyway. 
Coconut, our local HEB has organic unsweetened coconut 1 ingredient $1.94 a bag, before I used to order Let's Do Organic because everything had more than just coconut and I had issues.
 

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@Ennis_TX

You are a great source of foods that I would have never considered in the past.  I have been buying some things on the internet, but like ready a physical book, I still enjoy shopping in a store.  Like you, I have to work around intolerances.  Avoiding corn or even soy is very difficult, but you manage well.  I think in the future, we will see even more organic options and simpler processed foods.  People seem to want “real” food.  

 

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Thanks, everyone, for all the information posted so far in this thread --- I really appreciate it!

I do still have some fundamental questions about how to go forward with this Fasano Gluten Contamination Elimination Diet with DH that I'm hoping one or more of you might be able to help me with:

1) Given that I am 'only' 13 months into the (conventional) gluten-free diet, but have now started the Fasano Diet as of yesterday, how long should I really give it if I continue to have any outbreaks of DH?  What I'm getting at is that some of you have said that it took you literally YEARS to get rid of your DH while gluten-free, so at this point, what if my DH would inherently continue to act up for another year, or two, or three, Fasano Diet or not?  I simply don't think that I could continue on that highly restricted diet (taking into account that I also need to do low iodine for the DH at the same time) for years on end.

2) Assuming that after a few months the Fasano Diet does clear my DH, and I then want to try reintroducing some of the previously eliminated foods, on just what kind of schedule would I do this, assuming that I have no reaction to the reintroduced food?  One food every two weeks?  One food every month?  It seems that even in the best case scenario, I would NEVER be able to reintroduce many, many normal ingredients and gluten-free foods that are not on the Fasano Diet, simply due to the time involved in waiting to see if each one causes a reaction.  I mean, every single condiment, every single spice, every single ingredient of ANY kind might need its own separate month to test out?  That would literally take centuries!  That is a depressing prospect.

3) However, and this is the real kicker, I feel virtually assured that I WILL have a reaction to one or more foods once I reintroduce them to the strict Fasano Diet.  Then what?  Am I back to square one, and have to do the strict Fasano Diet for several months or more before trying any other eliminated food AGAIN?  Ugh!

4) If and when I start reintroducing previously eliminated foods to the Fasano Diet, and do have a bad reaction to a given food, how can I even know whether the problem is being caused by gluten contamination, or by the iodine content of that particular food, or maybe just because I am intolerant for some other reason to that particular food, or to an ingredient in it (such as being inherently intolerant of oats, or corn, or soy, or sulfites), assuming the food is perfectly free of any gluten?

I feel almost like I am walking into a giant maze, blindfolded.

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I have time to just give you a brief answer as I am making a birthday cake.  

Do not think that you will have to be on the Fasano diet forever.  Unfortunately, no one ever studies food and it’s impact on health.  There is no money to be made.    Not big money anyway.  There was a study done at Scripps in San Diego.  A tiny tiny study.  They used Inflammatory Bowel patients and asked them to NOT change their medications, but to include the AIP diet for six weeks as part of their treatment.  At the end of the trial, participants achieved over a 70% remission rate based on lab markers and not just symptoms.  Those are pretty impressive results.  Scripps did some more crowd source funding and are trialing Hashimoto’s patients (I have that too).  I am waiting for those results.  The patients on the Fasano diet were often able to calm down their immune systems and were able to go back to a gluten-free diet (hopefully, they learned to go easily on processed junk foods that is probably impacting our health).  

I did the Fasano diet for about two months.  But my celiac disease had either healed already or the diet healed it, but the real problem was not even celiac disease.  It started as a glutening and evolved into autoimmune gastritis within a year.   You may just need to do the diet for just six weeks before adding in new foods.  

When I first went gluten-free, it was easy.  Heck, my hubby had been gluten-free for 12 years.  I knew the drill.  I discovered I had different intolerances.  He can consume commercial bread containing Xanthan Gum, but I can not.  I kept thinking I was getting a gluten exposure.  At the end of the first year, I got my diabetes diagnosis.  I went on a low carb diet.  I choose veggies over grains.  Amazing, I felt really good going grain free.  

Five years later, I still avoid grains except during holidays.  I just feel better.  

I have had some gluten exposures and I have no idea how it even happened or what to blame.  I do know that my immune system goes berserk.  I can barely eat simple stews and mushy foods for over a month because it hurts to eat anything.  I have had daily, all-over-my-body hives for six months even on a cocktail of antihistamines and a low antihistamine diet.  My antibodies for celiac and thyroid shoot up.  My allergies.....my PCP told me I am the most allergic patient she has in her 2,000 patient practice.  Eventually, everything calms down and I go back to normal.  My best defense is remaining strictly gluten free.  That seems to start the cascade of symptoms and inflammation.

Be patient.  Take one day at a time.  You will work this out!  

 

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